Saturday the 11th of November 2006 10.36 am

Hello and thank you to everyone that has sent cards , postcards , letters , pressys and emailed us , thank you to each and everyone of you that sign the guestbook, it helps us to know that we have friends all over the world ,

There are so many people in the next few weeks on this journal that I need to thank , so many organisations that send cards , postcards , letters , so many wonderful friends that help with all sorts of things for Sammy-Joe , so in the next few weeks I will add photos , links and stories of how these wonderful people have helped Sammy-Joe .

We went to the RCH yesterday for his monthly visit with the stomach doctor and he checked out the peg , he is such a lovely doctor and has always been so concerned for me and Sammy-Joe , he is one of the doctors that I just want to hang on to ,he is so kind , understanding and caring , he has been fantastic for Sammy-Joe He has always been so open minded about his condition and doesnt ever make me feel like I dont know what I am talking about ,, thank Doc you are a blessing in our lives .
I know from time to time he reads this journal , I also know that Sammy-Joes paedetrician is someone I want to hold on to ,but not sure whats going to happen when he turns 18 .

Sammy-Joe has been so good lately with his behaviour , we have two new carers and he has been fantastic with them , he is such a joy the last couple of days , even at the hospital he was so well behaved , he really surprised me how well ,, I better not speak too soon ,,lol,, he has to go back on Monday to see his doctor , so I am hoping to take one of the carers with me , hopefully he will be well behaved .

I have been so tired lately , my eyes have bags on top of bags under them , they are so black , I dont sleep well and then when I finally get to sleep , Sammy-Joe wakes me for a feed ,, please pray for me because I can feel my body getting burnt out .I am one year older on the 17th of this month , so maybe its because of that .

I am also feeling a bit taken for granted lately ,, and just even the way some people are speaking to me is upsetting me , I am so tired of being kind only to get people speaking to me in a horrible tone , I dont think I deserve that , I dont feel I deserve any type of bad behaviour towards me because I know I wouldnt speak to anyone in that manner , please pray for these people that they see me in the right light .

I am always trying my best to help people whenever I can , I will try and offer assistance and I am a great believer that we are on this earth for a short time and we shouldnt take each other for granted ..

Yesterday I got to meet Leah from the Genetic Support Network of Victoria , she is so great , I gave her the information Brochures that I had made up for Sammy-Joe s condition and also for the support group , so that she can distribute them to the people that need them .
I am so happy about finally achieving that small goal which they helped me with ,, thank to GSNV .

I am so very proud to be a part of you all .

Some people have said to me lately that they believe what I am doing for Sammy-Joe is some kind of Miracle ,, but really I think I am doing what any mother would do for their child ,, its a mothers love that helps you find the strength to climb mountains when you think you have no longer got any strength left . I will keep doing what I have to for my son , when you look into his eyes , you can see its all worth it ,, Christian helps me also and reminds me everyday that he would want me to do all that for him too if he was as sick as Sammy-Joe ,he also reminds me not to over worry about him ,, he is so gorgeous , he says ""dONT WORRY MUM << I KNOW YOU LOVE ME THE SAME and dont ever think I dont know that ,,, sometimes I take advantage of that you know ,, I know you will do anything for me "" what a cheeky bugger , he know s that I worry and am extra caustious with him , I think I drive poor Christian insane sometimes ,, anyway thats all part of being a mum . well I better go now , I have to take Christian to his game , I have two carers from the council coming today , finally getting the time I am owed .. ,, well I am hoping that all will be sorted soon ,, I know I have a huge mountain to climb soon regarding , carers , and also programs to help Sammy-Joe ,, I think some people dont realise how much is involved when you have a child with a disability or illness ,, caringbridge had the right Idea ,, writing a journal online is the best way to raise awareness !

Maria


Wednesday, November 8, 2006 2:56 PM CST



Here are Christians Birthday photos , hope you enjoy looking at them , We all enjoyed the ones of the Balloons and Sammy-Joe , Christian wanted all the balloons to make his brother happy also , he knows how much Sammy-Joe loves Balloons now .

Tuesday, November 7, 2006 6:07 PM CST

Christians Birthday went well , he had some of his friends here and the night was good , all went well , I havent had a chance to get online as he and his friends have been computer hogs and internet hogs , so I will try and post the photos in when ever I get more than three minutes online ,, iTS CUPDAY HERE and so they are home and telling me to get off the computer , between them and Sammy-Joe I never get a turn now to be online .

I hope everyone is well ?
hugs
Maria

Friday, November 3, 2006 4:38 PM CST

Back online ,, yes the tech fixed the modem , he said it was very unusual for that to happen , but nothing surprises me anymore , we always end up with that ""this sort of thing doesnt happen , its unusual for this to happen "" I just thanked him as he was a very kind man and also he was good to my kids , he realised that Sammy-Joe wasnt well after he saw me Peg feeding him , and I think it broke his heart , anyway , its all fixed now and I am back online ,, now IJUST HAVE TO catch up and fight for my spot on the computer because these days , Christian is forever on the net ,, so usually I am waiting for hours before I can get on .

Its Christians Birthday on Monday and tomorrow I want to add some photos of him when he was a baby , I cant believe he is going to be 14 , he is so tall now , he is 5ft 7 , I am so short , he looks down at me , Its funny when I am trying to tell him off about something , I am pointing up at him and saying ""YOU <Christian is the apple of Sammy-Joes eye , he absolutely adores him and will jump at his defence each and every time , he is always saying ""Leave Chricken alone , leave my brother alone '' WHEN ever he thinks we are telling him off ,, its all too funny

Sammy-Joe still has an infected button and has an ear infection , Joe and I are a little depressed lately , things seem to be getting on top of us , The main thing is we dont have consistent carer time and this has put a strain on our family , we have been on edge for some time , so we have to really re evaluate the whole situation .We will be talking to our case managers about things , because we really do need some time for us , as that is pretty rare

Thursday, November 2, 2006 10:22PM CST

To Everyone,

Its Brooke here as Maria (I affectionately, call her Mum) is unable to use her internet at the moment and is waiting for a computer technician to come out to the house tomorrow and fix it. I am sure once it is fixed Mum will be on here ASAP to update her journal and let you all know how SJ and the Lisstro family are. However, for tonight you need to put up with me. This is only going to be a short email as I need to get some urgent sleep as I battle heavy eyelids and a virus at the moment.

Anyway, Both SJ and Christian are feeling unwell at the moment so please keep them in your prayers to aide them both in feeling better and to remind them that they are not alone. Christian needs to hurry up and get better as he has his birthday fastly approaching on Monday and SJ needs to get better as he has an appointment with his Paeditrician tomorrow at the Royal Children's Hospital. These two adolescents are so resilent they never cease to amaze me with their joy, love for life and laughter. I am sure they both will be feeling better by the morning.

There is alot of viruses going around at the moment, I have one too as well as SJ carer, Brian. Brian has been unwell for 3 days. So hurry up and get better Brian!

Finally Mum has nearly completed her brochures for her peer support group, hopefully they will be finished in the comming weeks. Congrats Mum on a superb job!

Good night everyone,

Brooke xxx

P.S. I am off to Sydney tomorrow to climb the Sydney Harbour Bridge, I can't believe one of my childhood dreams are just about to come true!

October 29th 2006

Happy Birthday to my cousin Salvy today .
Yesterday , I took Christian to his game it was a good game , they beat the other team , but all the kids including the other team had fun , I prayed for that before the game and hoped that the kids remember why they are there ,, to have some fun ,, every boy I spoke to after the game said the same thing ,, that they had fun and wished that all of their games were like this one ,, the boys played as a team and they enjoyed themselves ,, it was a good afternoon .

Sammy-Joe was home with Brian and my mum and he seemed to be having a calm day also ,, the whole day seemed different yesterday ,, this type of weather is perfect for Sammy-Joe cold dreary and wet days , hopefully we will continue to have pretty much the same all week , he ventured outside just for a bit of time and didnt complain ,, well today will be pretty much a lazy Sunday again , if I can get some photos I will add them later on
I hope you are all having a beautiful weekend .
love and hugs
Maria
there are certain friends of mine that I miss dearly and am wondering when I will hear from them , I know occassionally they read this journal , so if you do please call me or email me let me know you are doing well , have been thinking lots about you all and hoping that you are doing fine , if these words are speaking to you loud and clear ,,please listen to them , hear them and write to us to let me know you are doing well .

Maria

October 27th 2006

Hello everyone , Sammy-Joe is so precious , I felt unwell last night , my blood pressure was too low and so I wanted to sleep , Sammy-Joe sat next to me in bed and took care of me , Christian also was worried about me and concerned and kept asking his dad to check in on me , it seems that the whole world falls apart when I am unwell , fortunately this morning I am feeling better , just needed some much needed sleep .

Here is another photo of us to enjoy


October 26th 2006 10.23 am

Hello everyone , I would like to say thank you to everyone that has written to us , contacted us and also sent postcards to Sammy-Joe , everyone that takes the time to read this journal and to everyone that sends cards ,leaves messages and prays for Sammy-Joe and for us .
Today is Harmony day , and we are off to the Respitory Clinic today to see some Doctors , Sammy-Joes appointment isnt until later in the afternoon , so we wont be getting ready until much later , I am hoping he will be well behaved today as the last couple of days he has been a little cheeky and disruptive , he can be a bit of a cheekiness at times especially when he isnt feeling the best or wanting extra attention ,, I am not sure how much more attention we can give the boy as he has plenty of that , and that is for sure .


Christian isnt feeling very well today and so he is home again , he is asleep , he hasnt been feeling very restful and seems to be a bit anxious , I personally think he is doing way too much and have been encouraging him to slow down , but I think ""the apple doesnt fall far from the tree"" they say , and I feel he may be a little like me,,,, pushing himself too far and beyond his limitations .Which sometimes can be a good thing , but at times can be bad because you dont get enough rest and burn yourself out ,, I guess he is like me then ,,,.
, I keep telling him he will realise his own worth when he accepts that his life is a worthwhile expression of his energy and purpose , but I think he maybe misinterpretting what I HAVE been saying to him ,,,, teenagers ,,, I love him dearly and he is the apple of my eye ,,,lol,,

Well life can be very interesting indeed , and at the moment life is like a mini tornaedo ,, especially with mr destructive in full swing ,, this week Sammy-Joe has gone on a ""breaking mummys things rampage""" ,, not sure what that behaviour is all about ????,, but I am guessing he is getting a little tired of the same enviroment .

I have been encouraging him to go out at night more , go for walks and drives , but since we went to the Magic Show the other night , he thinks we are going for a long drive , so he gets a bit angry if we stop the car ,,,lol,, fun and games , Well I thought I would write in and remind everyone about

Harmony day , remember to be Happy , Harmonious and Humourous today because a little laughter goes along way , and dont forget to hug everyone you love

love you all
Maria
ps dont forget to pass on this webpage to everyone you know today also to create Harmony and Raise Awareness on this illness

love and hugs
October 25th 2006 7 am



Last night we went along to the Annual Lions Club of Melbourne Markets Charity Magic Show and we were greeted by wonderful Lions Club members , we enjoyed the show and Sammy-Joe managed to stay the whole show , he did cry a couple of times because he was a little scared of the noise and because of the lights , but he did choose to sit the whole thing through and he clapped and cheered also with the crowd , thank you Lions Club of Melbourne Markets for giving us the opportunity to venture out as a family , these beautiful people with enormous hearts all deserve medals for what they do for families with special needs children and seriosuly ill children .The amount of work and organising is enormous and they are all volunteers , so I am in awe of them , they are constantly amazing me with all of their kindness and beautiful souls .






Wonderful Eric , he has been doing this Charity work for over 15 years , he is a dedicated charitable soul .






Sammy-Joe was exhausted after the show and fell asleep almost as soon as he hit the bed , he didnt even want to change out of his solar protective clothing ,, he is so funny !!



This is Sammy-Joes cousin Georgia she spent some time playing with Sammy-Joe , when he was in hospital , every so often he asks me about her and I know that she also looks for him because her mum and dad and Georgia love to read Sammy-Joes webpage , Sammy-Joe fell asleep talking about Georgia , he THOUGHT he saw a little girl that was her at the magic show ,, how cute , he hasnt forgotten !!



We had a pretty busy few days , on the weekend my inlaws came over and so did my brother inlaw ALBERT and Sister inlaw Rose with baby AlICIA ROSE , SHE IS SO GORGEOUS AND a bundle of joy , Sammy-Joe loved seeing her and spending time with his baby cousin .

here are some photos of her






My friend Rosa came over yesterday and we had lunch together , I havent seen her for over 5 years , we have kept intouch by email , phone , msgs and texting , , ROsa is a beautiful ,vibrant soulhearted , kind person and she deals with helping to heal peoples souls , she also runs a clinic for Kinesiology creating Balance and Harmony wellbeing , I havent seen her in ages but we felt like we had only seen each other moments ago , she is a very dear friend and we met about 8 years ago when I had the pleasure of working along side her at the Kindergarten , we had such fun together , she is a wonderful and true friend , she couldnt get over how well Sammy-Joe has done after having such a rough time earlier this year , amazing !!



Well, these are the busy days we have had and we have enjoyed every minute of them , Sammy-Joe and Christian have been doing well and Joe also seems pretty happy the last few days , I am happy when I see my Family happy . I am grateful for all the special moments we go through in life .


Here is a photo of me cutting my dads hair , I am a hairdresser by trade , but of course dont work anymore due to Caring full time for Sammy-Joe , but occassionally I enjoy taking the scissors out to snip at someones hair ,, my family especially .




Sammy-Joe was being occupied at the time by hugging my mum
,,,,tightly as you can see by the expression on her face



its exhausting having too much fun and so around 6 pm he decided to sit under the verandah on his swing , but he almost fell asleep




October 20th 2006





OCTOBER 20TH 2006 DEDICATED TO Harley the dog ,,not just a dog a companion , loyal friend and brother to Brooke , please pray for Harley

Sammy-Joe has the same doggy slippers as Brooke , both Sammy-Joe and Brooke love animals , I am sure Sammy-Joe would fall inlove with Harley


This morning I have been talking to Brooke and she has told me that her dog Harley needs prayers as he has been diagnosed with stomach cancer , she is very upset and feels that everyone she loves dies , please help Brooke with prayers.



Harley has been a companion , friend , brother protector to her for six years , this inspirational young woman that has survived a stroke , is truelly incredible please pray for her and her friend Harley as she is someone that is dear to my heart ,,I love you Brooke and you are truelly inspiring .

Brooke

Brian and Sammy-Joe 19th of October 2006


Sammy-Joe has fun with Brian , these photos are some that Brian took on his phone , just wanted to share them with you all



Sammy-Joe and Brian sitting in the car




Sammy-Joe in his pile of toys



October 18th Universe Day


Its Universe Day and Carers week , I am happy to say that finally Carers are starting to be recognised for what they do , I am a Carer because I look after Sammy-Joe full on and sometimes with no help , most of the time I am grateful to say even if its just for a couple of hours , my mum will come and help me , thank the Lord for her , she is wonderful patient and Loving , I wish for Universe day that all positive things happen and that Abundance sets in motion in all positive ways , I also pray that all negative , energies , and people be taken out of our lifes because they are just exhausting and too hard to deal with most of the time , so its best that we concentrate on the POSITIVE AND BE GRATEFUL FOR ALL THAT HAS BEEN FOR US , Sammy-Joe is asleep again , he stayed up all night to about 4 am , then he slept until 7,30 am woke up again played magicians and played with his toys and now he is asleep again.
Maria


its the 16th of October


After a very emotional Sunday , I can say I feel a little drained , but I will just concentrate on the positives , as life is too short for anything else , look how wonderful these gorgeous photos turned out
We recently bought a fish tank for Christian as an early Birthday present , he is saying he wants to be a marine biologist and a basketballer , he wants to concentrate on the passions he loves the most , he is so good with the fish and he has given some to Sammy-Joe also , here are some photos , Sammy-Joe said he wants to be a magician and an entertainer , he definately is that !!!









he even set up a tank for Sammy-Joe , he wants his brother to share the same passions






Mr entertainment ,,,lol,,





Mr Magician and entertainer , he certainly does plenty of that , he definately is a magician because he makes things disappear for a short while , like our keys , watches and wallets and then they mysteriously turn up ,,lol,, funny about that !!!

and entertainer , well I am sure the photos tell it all !






he entertained my mother inlaw and father inlaw yesterday , he loves his grandparents ,,keeps them on their toes ,,lol,,




this is Nonna Pina




and Nonno Nello


An exhausted Mr entertainer ,, I think he wore everyone out yesterday ,,lol,,


More Photos to share


, I wanted to share some photos with you all , some that I havent been able to share before cos my camera was down , I am hoping that today will be a more positive day for us and we will be blocking our ears to all the critism s and judgements ofpeople with negative and ignorant way of thinking
, I truelly try all the time to stay positive throughout everything we go through , but sometimes its difficult when you keep hearing such silly things said and such ignorant statements made about our situation , I think we have done our absolute best with what we have gone through for 18 years, yes 18 years , Sammy-Joe will turn 18 in march next year ,, wow time has flown , and to continue to try and smile through it all , if anything it is this that has helped us get through , me be able to write and raise awareness has helped us in more ways than one to get through a very hard time ,

so I thank you to those who truelly understand our situation and to those that dont and continue to be negative , please walk away because we truelly have no time for you or negative thoughts , judgments or critism about having a child with an illness
and I can only wish you luck in your life because what I do know is that God sees all and knows all and one day it may be you going through something similar and this is when you will need to have the very things that you have not considered using towards us , such as compassion , understanding and unconditional love these are the qualities that are needed in our situation
, God is Grand and he knows all .So I leave it all to GOD .

My Good friends are going to help me to set up another foundation in order to help children with this illness

This is a photo of them below
Me simone and Heidi , my two friends who are going to help me with setting up a foundation for the other children that are suffering with TTD , thank you girls , dont you worry we will make this work for everyone that has TTD in Australia .





this is a photo of my friend Simone with Sammy-Joe , she truelly loves him and loves spending time with him
,she laughs with him , hugs him and just enjoys his company .









Maria




Presentation Night for Basketball was fun , 15th of October 2006

Presentation Night was so much Fun , the night was good for Christian .
Christian and his friends had a ball and we enjoyed the night , I was very sad leaving Sammy-Joe behind and it broke my heart that he isnt able to come and enjoy these things with us , this is partly the reason why I hardly go out because it kills me to leave him behind , but Christian needs me also and it wouldnt be fair on Christian if I didnt go , so off we went and the evening was pretty good here are some photos to share , my friend Melina was sitting next to us coincidently , her son Dylan also plays with Christian in Domestic Basketball so this was so uncanny that we were sitting at the same table , it was so much fun with her there .
here are some photos to share


this is of me with Sammy-Joe before I left , he was looking a little worried because he truelly misses me when I am gone and I miss him so much also .


Christian and me , he too hates leaving Sammy-Joe behind and gets pretty sad about it all , he says he wishes Sammy-Joe would cope with the crowd .



Melina and me , we had a good time and enjoyed the fact that we were sitting together , there were over 400 people there , Basketball is such a huge event in Craigieburn .




Me Karen and Melina


Joe and I


This is of Last seasons Basketball Team
Christian now has a whole new team and new coach also. it was sad to say Goodbye to Collin he has retired from coaching , but we have a new Coach this season and whole new team , last Friday nights game was their first Grading Game and Christian played very well , the new Coach is pretty impressed with him and wants him to open up more and not be so shy .







now this one is a favorite photo of mine , its of me and Sammy-Joe sitting on the swing under our verandah in the afternoon





WITH MY FRIEND Christine , she came over to visit in the afternoon










On Saturday the 14TH , THIS DATE SEEMS TO BE PRETTY SIGNIFICANT TO US EVERY YEAR , LAST YEAR WE HAD THE aUCTION FOR THE lIONS cLUB AND PRESENTATION FOR BASKETBALL , THIS YEAR IT WAS A PRETTY BUSY DAY FOR US

Later that day 14th of October 2006Sammy-Joes new Bard button


he sometimes likes me to pour the milk and he holds the peg , he is so funny



















thank you to Brian our Carer and to my beautiful mum Emilia for taking good care of Sammy-Joe , so that we could have an evening with Christian ,its so important to do these things as a family , unfortunately its pretty sad that Sammy-Joe is unable to attend functions like these , he gets very tired easily and wouldnt cope with the lights and crowd and noise , he would only last about ten minutes in a crowded area , and would want to go home straight away .



Saturday the 14th of October 2006






Tonight is Christians basketball presentation night and we are looking forward to going out ,








I finally got my camera to work , it will be the third evening in a while since we have gone out as a couple and of course with Christian , the last event was for Sammy-Joe , I am sad because Sammy-Joe doesnt seem to be able to go out at all lately and it means we are truelly missing him when we have managed to go , there have been a lot of weddings engagements and outings that I have had to say no to and I know alot of people have been offended by this , but there is nothing I can do about it , it is difficult to arrange carers and also to keep carers , I have only one carer left now from Paraquad and two from council and usually none work on a evening weekends , I have managed to obtain one this evening and had to give three weeks notice , so its quite difficult and this is a one off situation , my mum usually tries her best to look after him , but she cannot do it on her own for that length of time , last time the Fish tank broke because Sammy-Joe banged it too hard from sheer frustration , its difficult to continue to help people understand what we are going through and they can only know if they have to deal with it themselves .
Here are some more photos to share , finally my digital camera is working again , thank goodness and I took this photo of Sammy-Joe this morning , he has been asleep for about 4 hours now , its now 2,30 pm in the afternoon .






Il take some photos tonight and post them on here over the weekend , wish us luck , I hope Sammy-Joe will have a good day also today ,he hasnt been well at all this whole week .


I will add more photos tomorrow, I have been getting some emails requesting photos , so I will go through my stash of photos and try and upload them on here tomorrow if I have time .
thank you again for stopping by and thank you Luisa for the DVD and postcards you sent Sammy-Joe he loves them ,,, please email me some photos so I can add them of you here , Sammy-Joe loves looking at photos and putting faces to names , he always says"" hug these people, kiss ,, hug , play with me , come play with me ""



Scarlet and Celeste
Sammy-Joes cousins


Luisa and Chris
our cousins


Maria

ps please dont forget to pray for my beautiful friend Brooke Parsons , she has been feeling blue the last few days and I am a little worried about her , she is inspirational and the most sweetest girl I have ever met ,please pray and stop by her website .



Dont forget to sign the guestbook , its important that Sammy-Joe knows that you have been to see his site , he loves me to read the messages to him , and enjoys knowing that people , think and pray about him , it helps him to stay positive , which is the most important attitude to have .
Maria


oh these are some photos from the 29th Of August when the Lions Club had their Auction , I finally got some back , I like to share them with you all


Julie and Me


Heidi , Simone and Me



Julie and Simone



Joe and I before we left for the AUction , my mum looked after Sammy-Joe and she wanted to take the photo , I think she did a good Job !!


Carmela , Heidi , SImone , Julie and Me



Sonia , Carmela , Heidi and Sim


Heidi and Sim , they both are good friends of mine and support me one hundred percent with what I want to do with

""The Friends of Sammy-Joe Foundation ""

hopefully by next year we will have it set up ,it is in the hands of the solicitors right now .

The Beautiful Earth Angels of the Melbourne Markets Lions Club , thank you for being wonderful Miracles Coaches and for all the mIracles you have made happen for Sammy-Joe this last year , we couldnt have made it through the year with out you all





















This is Neil , he is from Paraquad , Paraquad is the agency where I get carers for Sammy-Joe.

Thursday 12th of October 2006 10.41 am

Sammy-Joe has another infection in his bard button and today is going to be a very hot day ,so he is already asleep after waking at 5 am , he has decided he doesnt want to go through summer , he was very anxious last night and kept asking me how hot it will be tomorrow , so I am guessing he is already feeling the pressure of summer , I reminded him of all the positives that summer can bring ,like going out more at night and in the evenings and that he will get to go for walks at night more and get to play outside more at night ,but nothing was convincing him , he is pretty upset today , I am not sure what to do about it all .

I wanted to retest my photobucket , so I will add some photos to the page now that you may have already seen , I hope you dont mind me re sharing these , but I thought I would share them as my digital camera is still on the blink , and so I havent taken any recent ones lately , but these are some that were taken for me , I hope you enjoy them
My first one is of The Lions Club Of Melbourne Markets the beneficiaries and also of our Beautiful Uncle Pat , he is the one in the middle that has done so much to help many charities accross Victoria , this wonderful Man deserves a medal for all of his positive work and contribution to the Community , he is very very positive and can lift your spirits in a moment .Thank you Pat LaManna for all the wonderful work you and the Lions Club of Melbourne Markets do for charities accross the state .




This one is of our little friend Kim that has TTD like Sammy-Joe , please continue to understand the importance of Raising Awareness for these beautiful CHildren that have so much adversities in their lives , just like Sammy-Joe Kim also battles with TTD everyday , she is doing well at the moment and her mum and I keep intouch through the net because we live in different States , I would love to see them again soon .



This one is of Brad and Sammy-Joe , I love it so much , Brad and his family have moved to the USA and we miss them , they are in our thoughts and prayers always , I know they think of us also , Christian is missing James a lot


This one is of course of Sammy-Joe , he got to hug his rabbit about a month ago on the trampoline , miffy has been doing all sorts of things to entertain Sammy-Joe , he climbs up onto our barbaque and watches Sammy-Joe through the window , he misses him also whenever summer hits as Sammy-Joe is unable to venture outside until dark , its so funny how animals are so much like humans and need the same attention we do , he is missing Sammy-Joes hugs .



I hope everyone is well and thank you so much for all your cards , post cards , gifts and letters and emails , it keeps us so happy to read them and receive them , I guess I will be writing more often these days as summer seems to be a time when I get to use the computer more .
I am so grateful for modern technology
and I am so grateful for Life .
Maria

Monday, October 9, 2006

Today was a difficult day for me , I have been so tired and exhausted about things lately , I am tired of explaining my situation over and over again to certain people , I really dont know why I must explain it when I have placed enough information on the net and also in newspapers , I have provided doctors letters and enough information on Sammy-Joes condition to last a life time , its the strangest thing that I am continually having to explain this still to some people that should know enough about it already , ,, strange The last week has also been a difficult one , our beautiful carer Daniel has decided to leave us and Sammy-Joe is devastated , so am I , infact it was such a shock to me that I cried for a couple of days , unexpected , he seemed to enjoy all that he was doing , but unfortunately he has been exhausted also and has felt a little burnt out lately and so , he wanted some time away . We now have one carer left Brian , he is wonderful and is developing a good relationship with Sammy-Joe and a great bond , I am only frightened that because he is our only carer he may also feel a little burnt out at times , we are going to review the whole situation and hopefully some other carers will come on board , the agency is trying its best and hardest to try and find carers to suit Sammy-Joe .

Sammy-Joes behaviour today was extra ordinary , he was very chatty and wanted to know alot about the enviroment , he kept asking me what the weather was , what time it was and also how many hours left in the day , he seems to be extremely aware of his surroundings now and also knows that its warmer and sunnier outside , he wants to sleep more and tends to have at least three to fours sleep a day .

I am so grateful to the Lions Club of Melbourne Markets , because of the lighting that they arranged to put in , the dimmer switches are great and keeping the lights low at night has been a good thing for Sammy-Joe also , Thank you beautiful people of the Lions Club of Melbourne Markets you are wonderful !!!

Thank you for your continious help and tender loving care that you have been providing to us , your friendship love , strength and hope has lifted our spirits and our lives ,, thank you for your friendship .

I have been in the process of thought has to what I need to do to keep Sammy-Joe entertained during summer , I know its going to be a long hard summer and I am hoping that Sammy-Joe wont suffer too much during this season , I wish it could be winter all year long I think it would be better for him , except for the flu and infections that he gets .

He has another infection in his bARD button again , he is on more antibiotics and on friday he will go back to the hospital to be checked out by the doctors .

wish us luck and I will try and update my journal asap .
Maria

Saturday, October 7, 2006

We are unlimited beings , we have so much power within us to change things , there is no blackboard in the sky , there is God and within us . he lives around us and within us and everyday children that have adversity in their life prove that , our lives can be what we create it with all the obstacles and as long as we have inner happiness then we can try and utilise all that is happening around us , we must try and focus and follow our bliss , like Sammy-Joe does , he is enjoying his life regardless of how painful and hard it is , he wants to enjoy everyday , if it means wearing poka dotted shoes or pyjamma s all day , I see a wonderful person with a huge heart and soul , I see a child that has gone through so much but still manages to smile and show love , he is the wiseone , he is something special and wonderful .
Sammy-Joe has so much enthusiasm in his soul , he is a magnificent creation , he goes forth and keeps fighting , he wants to keep growing , he wants to LIVE .
I know this for sure .
Maria

Monday 2nd of October 2006

I have had the Flu for a whole week and I am tired of it , I guess it isnt tired of me thou because I still have it , I have been trying to stay positive throughout it all but am pretty tired .
School holidays are over and Christian has gone back to school , they seem to have flown passed quickly this time , he wasnt too impressed I know he would love to have another week off as probably most of the kids would ,, anyway , he went off to school this morning in a big down way , I told him to focus on the positive and at least he will see all of his friends again , he saw most of them yesterday at basketball try outs , he cant wait for next sundays tryouts , he just loves basketball , he loves it with a passion and it shows in his playing .

Sammy-Joe has been unsettled , but is looking forward to see my friend Simone today , she promised to bring him a present , he loves receiving gifts and even if its just a bag of balloons he gets so much enjoyment out of receiving , he then trys to hug them all the time and wants Simone to hug and kiss him , he is so affectionate .
Heidi got lots of cuddles yesterday from him , he has a special way of making you forget your problems , he is an angel .

Lately he has been going round the house trying on different clothes , today he is wearing Christians button up track pants , five long sleeve cotton tops , his dads t shirt and my mums pink cowboy hat , he wants poka dotted shoes to match , he is such an eccentric , he has his own character and loves playing dress ups .

he has also been going round the house saying outloud affirmations ,, ""I am well , I am well , "" and carrying around some of my crystals , the pink ones of course .

My inlaws came over yesterday to help with looking after him and Brian his carer came to help because I had to take Christian out to basketball , the problem was Sammy-Joe decided to sleep for three hours , but at least Brian got to know my inlaws , Nonna Pina and Nonno Sam , he thought it was a good idea for everyone to get to know each other , Sammy-Joe has a way of building bridges and making people get to know each other well , he is such a funny boy .

Well sorry about all the lack of updates and no photos lately , my camera has been out of action , I am hoping I have fixed the problem and soon you will see more photos on the site , Sammy-Joe has had an infected button again so today I will call his doctor and see what we can do , mymum hasnt been well also , she has had a bad back and sore knee all week , Daniel is still unwell and is on Crutches and my brother is now on the road to recovery , Brooke is still also recoverying from the OP , there is no stopping that girl , she is truelly amazing !!! please continue to pray for all these special wonderful people in my life , and please pray for my hubby Joe as he has been feelling down again lately .

Life has a strange way of showing us what we truelly need to be grateful for , and throughout all the hard times I have tried to keep a constant smile on my face , and although I may not have as much as other people I feel I have alot more love and family , friends and lots of hugs from my children so in many ways my life is Abundant , I am grateful for all of this .
thank you for being a constant support to us and we look forward to your messages , love , emails , and cards , it keeps us going , and gives us strength .
love and hugs
Maria

Friday 29th of September 2006

Please pray for my Brother Claude that was admitted to hospital yesterday for some tests on his heart and while they were there they discovered one of his arteries needed a stint put in as it was very blocked , hence all the chest pains , he is recoverying in hospital now , but gave us all a big scare , he is only 42 years old and its an awakening how easily life changes , things are constant and always moving . He is in good spirits , he is Sammy-Joes Godfather and Sammy-Joe loves him very much because Claude likes to play guitar to him , Christian was also a little shocked and was worried most of the night , last night Sammy-Joe fell asleep with the guitar in his hand .
Maria

Thursday 28th of Sept 2006


I HAVE THE FLU , feel terrible hope my kids dont get it because its pretty awful , I have been so sick all night long , so I will keep this short , Sammy-Joe has been ok , Daniel his carer has been off work because he has hurt his knee and so he is on crutches , Brian has had some sad news his nIECE Angelina has passed away after a car accident and the buriel is today please pray for this wonderful family , I have been getting to know Brian while he has been working with Sammy-Joe and he is quite a lovely young man and has all the beliefs that we do as a family . please pray for him and his family while they are grieving for their beautiful angel .
mY HEAD IS POUNDING AND Sammy-Joe is calling me so I will have to cut this short , please continue to pray for Brooke as she is still recoverying from surgery , although she is a bubble of fun and a bright spark I know she still needs to recover , she is off doing all sorts of things already not giving herself all lot of time to rest , please pray for this lovely beautiful girl that has touched many hearts and last but not least please pray for my family as we continue to struggle with this flu that keeps wanting to stay at our house .
Maria
Friday, September 22, 2006 400 p, m

Firstly I want to appologise again for my lack of updates , I have been extremely busy with Sammy-Joe and Christian , also havent had much time on the computer lately because Christian has been a little bit of a computer hog lately ,,lol,, anyway other than that all is well here with the Liistro household .

We also have been praying for our beautiful Brooke Parsons that had heart surgery Yesterday , as usual she takes everything in her stride and her enormous courage is inspiring , she and Sammy-Joe walk with grace through every hurdle in their lives and I believe they are both earth angels here ready to teach us all a thing or two .

Joe , Sammy-Joe Christian and I are very grateful to The Lions Club for all that they have accomplished for us in the last twelve months , without them we would truelly be struggling , to pay for Sammy-Joes medical needs and daily needs .so we have a lot to be grateful for , these group of generous enormous hearted people have also taught us a thing or two , their giving and love is straight from the heart , the art of giving has been mastered through their whole hearts , they are amazing towards our plight and we are forever Grateful to them .


Sammy-Joe has been a character lately , creating so much fun for himself , riding his scooter in THE hOUSE AND WEARING HIS HELMET , HE HAS shown us that true abundance comes from within , he is so peaceful lately and seems to be enjoying having his brother home from school for the holidays , the kids are so close and some of Christian s friends have also benefitted from Sammy-Joes hugs and love , alot of the teenage boys , I thought would be scared of him , instead they love and appreciate all his little antics , its so good to see that kids have open mindedness about illness and disability now and have a level of awareness that seems so much greater than kids in our time s ,well I mean my times cos I am well and truelly into my 40 S NOW TURNING 41 THIS YEAR ,,EEEEEEEEEK ,,, SCAREY STUFF !!

Anyway , in two weeks I have learnt to live back into the light again trying to feel better about life .


Sammy-Joe has a way of teaching us to look for the good in everything that we do and also he has shown us how to concentrate on being happy , Christian too with his enormous faith in life and trust in God , he reminds us that we just need to trust and all that we ask for will be given to us , amazing amazing children , I feel blessed everyday to have them in my life .
Today Sammy-Joe spent alot of his day changing clothes and shoes , he wants to continiously walk around in my shoes , he likes to wear everyone elses shoes , he is so funny .

well if there is anything that I really want to say today , is trust in God , trust in the universe and becareful what you ask for because the Universe may just give it to you .
Maria

Saturday, September 16, 2006

wow , we have had all week of 4 am wake ups with Sammy-Joe , he still isnt really that well and is still trying to cope with this infection in the Bard button which is healing because it is quite itchy , and we are all worried he will pull it out while scratching , something that has let me lose sleep , I have been very worried that I will find that his button has popped out , something I have been fearing and dreading , I know that I have half an hour to get him to hospital if this were to happen , but still we live half an hour away from the hospital , so its a concern .

He has also wanted to venture outside a little in the afternoon , which this time of the year is not recommended for his condition because the UV is sitting on around 7 , but he has ventured out for ten minutes and realises that the sun is hurting and will come back inside , he is so couragious , he tests his abilities all the time , we should never underestimate the level of understanding that Sammy-Joe has , the other thing he has been doing which is quite miraculous is he has been wanting to taste , slowly , little amounts of blended food again , so this is also what I call a small miracle , I have faith and am positive that Sammy-Joes will and determination will get him through this rough patch of his life .
He is truelly amazing !! and I thank God everyday for him , I feel blessed with both my children , alot of people ask me how I can feel blessed when everything seems so bad for us , but I look at all the things I have learnt from having Sammy-Joe and alot of the things cannot be learnt from a txt book or classroom , all the experiences that I have had , he has taught me alot of things and having him has made me encounter many different situations and people and I am grateful and blessed that Ihave met them , either through his website , through prayer , through community help , through the hospital , through email , through charity events , I have met many wonderful souls and to experience what I have in 17 years is amazing , it isnt always so negative , there are so many positives that come out of having a child with a disability and illness , so please do understand that when I say I feel blessed I am truelly feeling blessed .
Maria

Tuesday, September 12, 2006 7.52 pm

Today was very very sunny , Sammy-Joe spent most of the day asleep , I got to do some much needed cleaning and also had a chance to sort out some paper work , I am working out a way to get a brochure finished and I also have been writing letters to see if I can get someone to build this indoor playground for Sammy-Joe , lots of hard work , I also have been trying endlessly to try and finalise the trustfund for the families that have children with TTD , these families much like ours are also struggling to provide the much needed enviroment for their children and some are also paying through the nose on medical expenses that are not covered by the government .The expenses that families with a child with a rare illness incur is astronomical , its amazing how much we have spent to help keep Sammy-Joe with us and to help provide a good quality of life for him , this is why we are mortgaged to the hill !!!
Anyway it is all worth it because you cannot put a price to a childs life ,some people do not understand how we feel , they only have to walk a second in our shoes to understand , and even then I am sure some couldnt cope , there are many sacrifices you must make as a family and many things you have to give up , but I am telling you I would give up more if only it could give my son a second chance and give him a normal life , I know I have done more than my best to help him and I will continue to do more , while Sammy-Joe was asleep today , I looked at him , he is so angelic , so amazing and so innocent , he is a pure soul full of love , his heart is full of love , when he woke up for a second he smiled at me and his smile lit up the room , he is my sunshine , my star , my heavenly being , he is Gods Child and whoever thinks anything else is so totally wrong , when I look at him I see Jesus in his eyes , he is so beautiful and so worth everything , you cannot even put a value on him he is more than life itself , I love him and will continue to try my hardest to give him everything I can , Iknow that oneday maybe some kind of Miracle will happen , because I believe in Miracles and Sammy-Joe is one .
Maria

Sunday, September 10, 2006

Thank you for checking in on Sammy-Joe , he has been a little lethargic today and has spent alot of time sleeping , playing calmly in his room and reading books , he has asked me to read him a novel ""Treasure Island "'and has been listening to me closely , he also has taken his toys on a pirate adventure and imagines that his room is a great big ship ,its been good to see that he has a great imagination still , on his health issues , he has continued to lose weight and this I believe could be the cause of all of his tiredness and sleepyness , he is not as energentic as he used to be a couple of weeks ago .
He has spent some time outside at night , but because it is so cold still he has another cold and a tickley cough .
Christian has given him some more gold fish and so he now has four he has named them ""PHIL Maria

Thursday, September 7, 2006

I had a very very busy day , full of meetings to do with Sammy-Joe and also parent teacher interviews on Christian .
All is sorting out finally and things for Christian are fantastic , he is doing very very well at school , seeing as I was so worried because of the amount of days off he has had , I shouldnt worry ,because he is doing great , all the teachers are understanding of our situation and when you explain our situation to them , they are instantly shocked at what they hear , they believe Christian deserves an award for his courage and bravery and his gorgeous smile , despite all he has to see and watch his brother endure , he is amazing to still make it to school .

I am very proud of him , I am proud of both my children , this situation isnt easy at all .

Sammy-Joes meetings also went well , but I do have a headache , thank goodness for my mum that came over and helped with the cooking , we had a carer for Sammy-Joe and he is wonderful , I am so happy with the carers we now have and hopefully life will start to seem a little more so called normal for us , I am so tired I want to go to bed already and its only 8.39 pm at night .
take care
God Bless
Maria
ps
all went well at the hospital , his left eye is something we have to keep an eye on and the vitamin d , bone deficiency is also a worry at the moment and the bard button being red and sore also is an issue .
take care hugs

Tuesday september 5th 2006 5.55pm

Sammy-Joe had a bone density test done today and it showed that his bones have weakened and also that he is at high risk of fractures , his Vitamin D levels are very low and so the doctor ordered a shot of concentrated Vitamin D in one go of 100.000 units rather than the oral daily dose , he believes this could be the result of an onset of yet another regression , we really need to watch his weight loss and also the fact that he has lost hair and that his Vitamin D levels keep getting lower .
Sammy-Joe slept after this visit and seems to be a little lethargic , tomorrow we have another visit to the hospital , we were there at 9,30 am and didnt get home until after 1,30 pm , its a full day for Sammy-Joe as he rises in the morning at 4 am , so its also a long day for me .When we got home he was so calm and wanted to just sleep , no side effects as yet , but I am thinking he is too calm for my likeing , usually and indication that he isnt all together well.
I am also quite saddened by the passing of a Great Australian Icon , Steve Irvin Crocodile Hunter has passed away after being stung by a sting ray yesterday .Sammy-Joe liked him and would say ""CRIKEY" quite a bit .
I know the whole of Australia is sad and also some of America as Steve made a statement to so many people .
I will update tomorrow on the latest on his Eyes , he does have the begining of a cataract in one eye , cant remember which one now , but I will ask tomorrow .
hugs
Maria

Monday, September 4, 2006


Sammy-Joe is still unwell , he has a cold , and a very sore throut his bard button is still very red raw and infected , he has been so unwell for the whole week and today I took him to the hospital to see the paedetrician , she was a little concerned about the weight loss , he has lost six kilos ,in two weeks. It will be a concern if this keeps happening , especially cos his life line is his Bard Button .
I have been an emotional mess lately , trying to put on a brave face and trying to be strong , hiding my feelings and also trying not to show anyone what I am truelly feeling , this week the question of the house has arisen once again, This house is Sammy-Joes life line also , without it he is uncomfortable , he is safe in this enviroment and he feels protected from the light here , this house is a medical necessity for him , he doesnt attend school because the enviroment is not tinted , or there are no shutters , all the lighting in the school is like a bright christmas Tree , his home is his safe enviroment , there is no recreational centre , no respite home for him , he is safe only here .
This home is the most important safe haven for Sammy-Joe , even the hospitals have trouble to cater for Sammy-Joe especially cos of the lighting ,tinted windows , and the shutters , this house is a medical neccesity for him .

I am trying to also cope with the fact that Sammy-Joes condition is neurological and only now it has suddenly hit reality for me , he has changed in many ways especially neurologically , I am also trying to stay as positive as I can and I do realise that I have had so much help from good people around me , The Melbourne Markets Lions Club have been wonderful and supportive for us through this, if it werent for these people we do not know where we would be right now ,they have been a life line for us , I have also been talking to a lot of people in the community about our situation and hopefully we will get some help soon , We definately need to have continious help with alot of Sammy-Joes needs especially because of his current situation .


I so dont want to sound like a broken record and I so want to stay positive , but I also need to keep our situation real and reality needs to be told through out Sammy-Joes journey, his life is hard and every single day this young beautiful angel of GOD struggles , like today , once again feeling unwell and having to cope with yet another infection , and also having to cope with the emotional pain of not ever being able to eat again , we have tried giving him small amounts of blended food pureed and made sure its finely blended , so that he isnt at risk of choking , but he still struggles and so he gives up , its really getting to him and he is so sad about this all the time .

Joe , Christian and I are forever worried about him and having a peaceful night is such a distant memory now , we havent had peace for a long time .
We are all living on edge all the time, hanging on some kind of thread , I want to keep saying to myself that tomorrow it will be a better day , but sometimes its hard , and at times I want to tell myself that I am not going to get myself in a rut because , the most important thing is to live in the NOW AND TO TAKE ACTION ACCORDING TO THE NOW , this is how I usually deal with things , but unfortunately this week I have let things get me down , I guess I am only human .

Sammy-Joe is such a special angel and Christian is such a special brother , we are all special .Sammy-Joe has wanted me to sing YOUR MY WORLD to him by sherbet , every day we have been singing it , he knows the word s off by heart now .

This week Brooke told me some sad news about her , she has to have some surgery done on her heart and her surgeon has told her if she doesnt have it done she may not get through the next few years , this is so sad for me to hear , when I try and think of the next five years of our lives , its too painful I cannot imagine, my Sammy-Joe and my Brooke not being here with us , its too hard for me to think like this and this too has been the source of my saddness this week , please pray for my aching heart as I feel so sad , I know I must only concentrate on the now .

Joe has also been struggling to understand our situation , having to work out the budget and also trying to work out whether we need to refinance or not , but I feel we have no choice and we must , this has been our life , we have had to do this to keep up with alot of our expenses. Thank Goodness we have had the help of the Lions Club for most of Sammy-Joes medical expenses otherwise we would really be in deep trouble , its such a harsh reality for families that have children with a serious and chronic illness and I never really thought , before I had children , that I would be in this position, I had a great Job , a great career , so I really never thought I would be a family in this position , but the reality is this , we are a family in deep financial concern , we are a family that has a child with a special needs child that has a critical and chronic illness .
Thank you to everyone that has prayed for us , thank you to everyone that has in anyway contributed and helped us to continue to try and give Sammy-Joe a good quality of life .
Thank you to everyone that has remained friends with us despite all of the adversity that surrounds us , thank you thank you because without you all we wouldnt be able to get through these hard times .
Tomorrow we have another appointment at the hospital RCH FOR endocronlogy and then on Wednesday we have the Genetic eye Clinic to attend to at the hospital again .
thursday I have Parent Teacher interviews for Christian , and also a meeting with my case manager and the Hume City Council , lots of information to absorb this week ,and hopefully Friday will be an easier day , but I need to catch up on my housework
I will also try and update my journal on a more regular basis as I have been a little slack lately on the updates .

take care
Maria

Saturday, September 2, 2006 4:14PM CDT

Hey one and all,

Its Brooke here on behalf of the Liistro family. I have just spoken to Maria (Mum) and have told her I would update Sammy Joes website to give you the latest on where he is at.

As you would know Sammy Joe has been very unwell and has had the Locum out at all hours. The Locum prescribed Amoxycilian however this was the wrong antibiotic, Sammy Joe needed a wound antibiotic. Yesterday Mum spent most of her day on the phone to the medical profession to get the right antibiotics. Sammy Joe has been on the correct Antibiotics since last night and is starting to pick up again.

Due to Sammy Joe not being well, his frustration levels go way beyond the scale of imagination. Just imagine not being able to chew food however can smell all the aromas. Well, for Sammy Joe this is life and he is being really destructive (Breaking things like fish tanks, photos and other objects). He also broke his bedroom curtain out of pure frustration so Mum has spent quiet some time cleaning up after him.

The family adore Sammy Joe, just like us all, however they are becomming emotionally drained and worn out physically /mentally. Both Mum and Dad are at their ends and only want to do what is right for Sammy Joe.

Since Sammy Joes last operation he is a different boy...

We will keep you updated...

Love Brooke Parsons, Sammy Joe, Maria, Joe and Christian Liistro.

P.S. Just as I went to hang the phone up Mum asked me to include that she was very sad to hear the news I had just told her and that she couldn't think of living life without Sammy Joe or myself .

Thursday August 31 st 10.53 pm

The Locum doctor was here last night to check Sammy-Joe s Bard button , he has an infection and is on antibiotics , he also has a throut infection as well , today was a terrible day for Sammy-Joe , he was quite upset and was very annoyed all day , he was screaming and was sore with his peg feeds as the wound stings , I know he hasnt been too well this time round with this latest recovery , he has been very irritable all day long and up until tonight , I feel so sad when he is like this because he suffers so much , he is in a lot of pain , he is asleep now and this is unusual for him to be asleep at this time .He keeps saying he wants to go to hospital because he is so unwell , I am frightened that he will end up in hospital again , the doctor came over at midnight .I have a headache and have been trying to get some rest .
Maria

Tuesday, August 29, 2006 9.38 pm


Sammy-Joe has broken another thing , I am not sure why he is so destructive lately , I am guessing that he has been affected by the last operation , the medication and just all the changes that have been happening around him , this afternoon I tried to get him to venture outside for about ten minutes but he refused to , it was late in the afternoon and the UV was on 1 , so it would ve been ok for him all covered up as usual , but he refused , he said he hasnt been feeling well .He is sitting here next to me playing with his toys , but he doesnt look very well at all , his Bard Button scare is quite sore and red and puffy and it stings him a little , I am afraid he may have an infection , I will have to call the local doctor to come and visit him at home to see if there is anything they can do .
The lighting in my home has been finished and now we have dimmer switches and also have some wall lamps which Sammy-Joe broke today , the lighting has been donated to us by Sherrin Lighting and the Lions Club of Melbourne Markets as promised Last october in the 2005 Grand Charity Auction .

Well I just want to say Thank you , thank you to all the kind people out there and for everyone that leaves beautiful messages in the guest book your support is so important to me .

Monday 28th of August 2006

Sammy-Joe has had a busy day , he has been constantly going around the house trying to find things to do he woke up at 4 am and then he was on the go full swing , he is like a toddler all over again , except he has been watching old video footage about himself and has been trying to imitate some of the games we used to play when he was around four , I can see that the feeds , the formula he is on has actually made him lose weight and he has also been wanting to learn more , asking me what words mean and what sentences mean , he has been also very destructive , today he broke our big fishtank and we had water all over the floor and fish everywhere , the good news is we saved all the fish , but my living room needs saving , the water caused some damage , any way as long as he didnt hurt himself , the fish are now in a smaller tank and the broken tank has been thrown out , in the last six months Sammy-Joe has broken more things than I can count , I am not sure why he has become so destructive and I can only think that it is from frustration and the onset of puberty .
Well anyway , today I was still very teary and very emotional , I have been hearing more criticism that has been said about me , and also just the way some people have responded to me lately , idle gossip is something I have never taken notice of , but when it has to do with my personality or the way I raise my child , it certainly is very hurtful , it is also hurtful when people assume things and do not ask me or give me the respect to actually know what their opinion of me is to my face , I overheard something on Saturday that was quite hurtful regarding me and I was quite shocked by it , especially because I was directly behind the person that was saying it at the time she was saying it , it hurt me because this is one of the people I thought I could trust the most with my situation , it goes to show you cannot Trust the people you think you can , I have been so hurt by her comment and statement of me that I have been crying all day yesterday and today , I think its because I would never do anything to hurt anyone and what this person has said to others is quite damaging to my character , I am sure she realised that I heard her , but the problem is I didnt confront her because I was in a public place at the time and didnt want to cause a scene . So there it is , its idle gossip and simple jeolousy towards me , but its something that isnt warrented because I do not deserve it , I have always thought of myself as a person of goodness , love , care, kindness and always felt that people saw me that way also , but the last few months I have heard some shocking and outragious critism and it is quite hurtful .
Maria



Sunday, August 27, 2006

I am very emotional today and have been crying all day long , I cant seem to stop and dont know whether my tears are of saddness or of joy , it has been a very busy week , Sammy-Joe s behaviour has been all over the shop , but he is still as lovable as ever , he doesnt sleep much , but has been complaining of a sore ear , so its been hard with him not sleeping at all , he will go to bed at 4 am and then I need to wake at 6.30 am , its been hard and exhausting .
Maria

Thursday 24th of August 2006 8.35 am

Sorry for taking so long to update , Sammy-Joe has had his surgery and is still not quite himself , the good thing was we were home the very same night , so he didnt stay in , he had a slight tempreture and was very very groggy , but slept most of the evening , the next day he still did lots of sleeping so I think he is still trying to recover from all the drugs and meds he was given for sedation . He has been complaining that someone stole his Polly and although I tried to explain to him that he now has a Bard Button instead of Polly , he still is upset that Polly is gone ,, he said that"" Bart Button is hurting and stings , he is naughty , dont like Bart '' SO ITs going to take him a while to get used to , and me too , although in the long run it will be better for him , it is a more permanent button and only will need to be changed every 18 months , the other things I have to get used to is the new way of feeding him and all the attatchments , but once I master it I will be fine , we all have to be more patient , in the meantime ,Sammy-Joe continues to search the house for Polly and yells out all over the house ""POLLY WHERE ARE YOU < I LOST MY POLLY PEG""and most of his toys now go on long searches with him looking for the lost peg , its so funny , at least he has a wonderful sense of adventure , I just wish I could one day build him his indoor playground so he could really go on some fortress adventures , our house is so small , he only has a certain amount of room in our house so its a little unfair that he really is so limited with space .
We have written so many times to BackYard Blitz , and renovation Rescues team , but the answer we all get and I mean all , we have had so many of my friends write in for Sammy-Joe and the letters get rejected , they dont think its a big enough story , which makes me mad , Sammy-Joe needs to have somewhere else to go apart from four small rooms , an indoor playground would be wonderful for him .
Oh well , its gonna take me a lot of time to achieve and lots of fundraising , but I will try my best to try and get something done for him .I have been writing letters to all sorts of companies to see if they can some how help , havent heard back yet , I guess no news is good news , I feel like sometimes I am constantly asking for stuff , but on a low income its impossible to provide all of these things for Sammy-Joe , The Lions ClUb of Melbourne Markets were our life savers back in October last year and I am so grateful for their enormous generosity , but to go through every year without help with all the medical costs and needs , well its going to be impossible to get through ,thank goodness I had the idea to set up the Trust fund , when its working properly it should allieviate all those extra stresses that we need to worry about , it is there to cover all the medical needs and costs for Sammy-Joe , I pray to God everyday that somehow things work themselves out and we will always find the love , care , help and generosity of good kind people that understand and care about Sammy-Joe ,And the things that money cannot buy are support , love understanding , friendship , kindness , these are the things that are the most important to us , Sammy-Joes happy mail , his postcards , every message that he receives that helps put a smile on his face ,every gift he receives through the post , you should just see his face light up whenever he gets something , or sees the post man at the door , these are the things and moments that are priceless and precious , seeing him smile amongst all of his adversity that he faces and has to deal with every day , this is what makes me more determined to get through each day .
Thank you to everyone that has contributed in anyway , whether it be a message , email , letter postcard , I am grateful to you all .


Christian hasnt been well all week , but I think its to do with Sammy-Joe , everytime something happens to Sammy-Joe , Christian wants to stay home with him all week from school , he is worried that something bad will happen and he wont be here to help , he is so precious and loves his brother so much and says he feels so sorry for him , it isnt fair that he cannot eat and enjoy food anymore , Christian is grieving again , everytime somethings happens to Sammy-Joe , Christian will be fearful that the time is getting close and he said he doesnt want to ever say GOODBYE .
Life can sure be tough in our house , but it can also be full of love and very very chaotic at times , Joe too has been a little off this week , but I am guessing that its all to do with Sammy-Joes operation , it is like an emotional rollercoaster for us , things are constantly changing all the time , and we are having to deal with new things every single day .
me , myself , I am just tired because of lack of sleep , I have lost about four kilos during this whole ordeal with Sammy-Joe , which is probably the wrong way to lose weight , with worry and stress as the triggers .
Anyway , with Carer issues and limited space and time , I think some things that are petty worries and are just not worth worrying about for example , like things that can be fixed or sorted , toy messes and such , these are probably the things that sometimes people with ordinary lives worry about , but people with children that are sick or disabled , we worry about , pegs , nappies , wipes , tubes , sterilisation medication ,making sure medication is given on time , making sure the needs of the child are all met before meeting anyone elses needs , oxygen wheelchairs , doctors appointments ,money for car parking , petrol , we worry about LIFE .so for those people that constantly tell me not to worry ,please place yourself in my shoes and just try to think what it is like , I know that they can be well meaning words ,but to a person that has cared for a sick child for 17 years , those words do not have any meaning , because all we do do is Worry , that this day could be our last day together and that having to say GOODBYE is going to be the most profoundist pain any parent can ever experience ,, we do just worry , all the time .so if I look at you with a blank look on my face after you have told me not to worry , please understand that I am grateful for your kind words and well meaning hugs , but worry is something I have been doing for a long time and I dont think its going to change overnight , its something that I constantly do and think about everytime something new happens to Sammy-Joes condition , and in saying all this , please do not take it the wrong way ,I need your support , love care and friendship to get me through each day , without everyone I would be lost , and I also think that when the time comes that I have to say Goodbye ,this is when I am going to need everyone to be strong for me because after everything I have been through with Sammy-Joe and constantly trying to be strong , I wont be able to be strong anymore , saying Goodbye to my precious boy will be the hardest and most painful thing I am ever going to have endure , my heart is already broken , but then it will be no longer .it will cease to exist , it will be dead , I know my heart will die ,Christian tells me that he wants me to keep going for him and I know that this will probably be true because I love him as equally as I love Sammy-Joe , Christian will have to be my strength .I know Joe feels the same as me , we talk about this often and we always say that Christian will be what will get us through the hard times .
please pray for us as we go through so many mixed emotions this week , please pray that I continue to have the courage to speak out and talk about our life , please pray for my family , Joe , Christian and of course please always for our Sammy-Joe , please please pray , pray and pray because I know that God does hear the prayers.
Maria






Monday the 21 st of August 2006 11.01 am



Firstly I want to appologise for not being able to update this week at all , alot has happened again in our household , Sammy-Joe is due to go into Hospital tomorrow for surgery to turn Polly Peg into a button , I am not sure whether we will be in overnight , but I am praying that it will be a day procedure , we just have to see how we go with it all .
Secondly I have had a busy week interviewing carers and also trying to finalise things to do with a brochure I have been working on , next step is getting a printer to work on it , i THINK I may have found someone that is willing to help . I have also been trying to talk to some locals about organising fundraising event and at the same time trying to chase after last minute details to do with the applying for some bathroom modification funding , so its been full on , imbetween all of this I have also tried to chase after Sammy-Joe , he has been a mini torneado lately , trying to do as much as he can in such a short space of time , he really isnt sleeping much at all lately , I have been talking to him also about trying to help him to understand that Polly peg will not be there anymore instead Mickey Button will be there , so its been alittle difficult for him to understand all of this .
Also he has been imitating his brother a bit , Christian has hurt his ankle playing soccer and has a ligament strain and he has it all strapped up , so Sammy-Joe has asked that both his ankles be strapped also because he wants to be like his brother , very very funny indeed , Christian doesnt think its very funny , he has today off school .
Thank you for all your prayers and thank you very much for all the postcards and letters we have been receiving , Sammy-Joe has continued to collect them and has asked me to count them we now have 25 postcards , he is excited !!

I hope you are all well and if Sammy-Joe does stay overnight ,we will be at the hospital by 8 am tomorrow I will get Brooke to update my journal for me .
love and hugs
Maria

We have to say goodbye to Polly Peg

Sunday, August 13, 2006 11.03 pm

Sorry about the lack of updates , we have had a busy week , firstly with hospital appointments and secondly just with Sammy-Joe and his new found energy level , this week Sammy-Joe has been full of beans, he started to feel better around Thursday and since then he has been like a mini cyclone , he goes around the house moving all of my photo frames and he plays pretend castles , he has been taking the Gold Fish for adventures and he even has tried to do alot of things on his own ,like dress himself , poor his own drink , he has been cleaning , trying to sweep the floor , feeding the pets and then reading books to his Gold Fish , its like he has a new lease on life all of a sudden , its so strange , I am not sure whats changed in him all I can say is I think all of our prayers have been answered , he also ventured outside in the late afternoon and wanted to sit under the big Umbrella .



On Friday we went to see the doctor and he was quite impressed with Sammy-Joe and also with the fact that his speech has improved , he will need to go under anaesthic in about three weeks to have the peg changed to a button and I am hoping that Sammy-Joe will stay healthy enough for this procedure . I am also a little concerned that all of this burst of new energy may be leading to another maybe more negative event in his life , because in the past whenever Sammy-Joe seems to have bursts of improvements along comes some kind of regression suddenly , I hope I am wrong this time .



Christian is such a great brother to him , he has been reading lots of books to him and also trying to get him to play with him a lot more , he has noticed that Sammy-Joe seems to want to do more things with him also , like play with the ball , Sammy-Joe even wants to wear the hats that Christian wears . Christian played a great game of Basketball on Friday night although they lost he shot about 16 points for the team .


Joe has been working alot lately and I have been spending alot of time on my own with the kids , we havent had luck with Carers this week either , so I am pretty tired as Sammy-Joe has kept me awake alot during the night , I have bags under my eyes .



Sammy-Joe said he is a champion and deserves a gold headband



Anyway , here are some photos of Sammy-Joe , I am sure you can see he looks a little healthier these days , Ihope he keeps up the good work , he is a miracle boy .please continue to pray as I believe all the prayers are working , Sammy-Joe has certainly been a different boy this week .



Sammy-Joe reads Bible Stories to the fish ,,( Marsha the gift is lovely he loves it .)




Sammy-Joe sits under the Umbrella with his pet rabbit Miffy , he loves the trampoline and sitting under the umbrella at around 5.30 pm in the evening .






Sammy-Joe and my mum

Tuesday August 8th 2006

Sammy-Joe didnt have a good day today he was upset and tired and not feeling well at all , his behaviour was terrible and he seemed very irritable and very very annoyed at everything , he kept insisting he wanted to bring the dog and cat inside and I didnt want them in as the dog hair and cat fur can be dangerous to Sammy-Joe when he has a cold , he can inhale it and then gives him all sorts of breathing problems , it was so weird that he behaved so badly today , because he has been so good lately , Sandra and her family came from the UK to visit us , her husband Steven was working and so Sandra brought the kids and herself over to us in a cab , it was so wonderful to see her , her son Alex also has XP and is extremely senstive to the UV light also and I was a little sad that Sammy-Joe wasnt on his best behaviour for them , he just didnt show them the best of him , but Sandra was so wonderful she is so understanding and so caring about the whole situation , we totally understand each other , because we know what its like for both of us . Sandra ,showed me a dvd interview on Alex , it was so good to see him explaining things to the camera , I was so amazed at him , Sandra runs a support group in the UK , I am so connected to this family , I felt like I didnt have to explain myself at all because she understood everything that I was saying about what its like for us .
She is so positive and a wonderful inspiration I was just sad she isnt staying longer , it was such a short visit .it so unfair that we are on different part s of the world
Sammy-Joe ventured outside in the afternoon , but then fell asleep shortly afterwards , he truelly isnt feeling well , we didnt even get photos with Sandra , I got some but none with Sammy-Joe , it was pretty sad that we didnt have more time , next time they are in Australia ,we will have more time to do things . I cant wait .
Christian , Alex and Holly seemed to have a good time , My cousin Michael popped in also for a coffee so it was good timing , they got to meet my cousin Michael .I was so happy that they came , but Sad that they had to leave so soon and that Sammy-Joe was nt at his best , he can be so adorable when he is not sick , he is so different .Steven managed to get here after work and so I was able to get a family shot of them , I am so happy I got to meet them , they run Camp in the UK similar to CampSundown , the one we were meant to be at in America for our visit , it was so sad this year for us we didnt get to achieve what we were meant to because of what happened to Sammy-Joe , I showed Sandra how I feed Sammy-Joe with the food peg , and how this has been a harsh reality to me that Sammy-Joes illness is degenerate , she understand s totally and explained to me that Alex can be the same in some ways to Sammy-Joe , Sammy-Joes needs seem to be alot more intense because he has so many things that can go so wrong for him because of TTD , XPD , what Sammy-Joe has . Seeing Alex covered up was like looking at Sammy-Joe in some ways , because he needs to cover up the same whenever he ventures outside and he must wait for the sun to go down completely before he can venture outside , very similar to Sammy-Joe .


Sandra and Me , I was so happy to see her and finally meet her




Holly , Christian and Alex playing together



Sammy-Joe was asleep , he didnt get to be in the photos with us , I was so sad that he wasnt well enough , but next time I will have to get lots and lots of photos .

Alex , Christian and Holly got along so well , I was so amazed at how well they all got along , very wonderful kids , Christian was amazed at how good Alex is at playing Pokemon .he said to me he really wished they couldve stayed longer .
Sandra runs the support group in the UK
its called the XP Support Group

http://xpsupportgroup.org.uk/

please read about Alex and visit the website , I am very proud of Sandra and am very inspired by everything she is doing .


Monday, August 7, 2006


Sammy-Joe has had a bit of a rough time again ,every morning he is nauseas and wants to throw up all of his feed , he has put on some weight again which is good , but I can see he is starting to go on a downward slide again , I just wanted to show you some photos I took over the weekend , we had a very busy weekend with basketball and lots of little visitors , all is looking ok now , but I am sometimes worried that this could be the calm before the storm , please continue to pray for us as Sammy-Joe needs more prayers than ever , and so do we , life can be tough in our house and this week seems like it is going to be a beauty , because financially we are strapped and we are trying to improvise with the little food we have left in our cupboards , trying to make things stretch as we have a big bill week , hopefully next week we can do some grocery shopping , anyway , as long as we have each other , thats all that matters to us , I am a great believer that God provides as times get tough and he hasnt let us down so far , today Simone came over , she only stayed for about three hours but it was fun to see her , Carol came over on the weekend to visit also , it was good to see her , its always hard for me to catch up with people , my time is so limited because I am taking care of Sammy-Joe , Christian , Joe , the pets , the house , washing, cleaning , cooking ,, the bills , running the support group and trying to organise things with the Trust fund , I have Heidi ,sam ,Joe and Tom helping me , so thats been great I appreciate all the help I can get , its hard trying to do it all on your own sometimes so I have learnt to ask for help .


Here are some great photos




Sammy-Joe with my mum and dad , he is Christians biggest basketball fan !!!
he is wearing Christians basketball top



Sammy-Joe poses for a basketball photo









My two gorgeous boys

Friday the 4th of August 2006 6.32 am

Not much has happened in the last couple of days , except for Sammy-Joe not being well again , he had one day out of the two just throwing up all his peg feeds , yesterday he wasnt much better , he spent most of the day in bed with a tempreture , sore ear and throat and just being in pain , I am not sure why because he hasnt had any light exposure except for when I took to the doctors , so I am not sure why , he has lost more weight so next weeks appointment with the stomach doctor may change some things , Iknow he will soon have to be booked in to turn Polly peg into a button , but I am not sure when . Sammy-Joe has been sleeping next to Christian s guitar , he loves Christian so much and tries to carry all of his things for him , he is so cute , he has taken on the little brother role for Christian , instead of big brother roles , the role has been reversed because of Sammy-Joes intellectual ability , he is our Peter Pan , thats how I describe him living in a world of play and looking at the world through the eyes of his soul , Christian loves him and lets him get away with almost anything .He has let him have his guitar to hold in bed , its funny watching Sammy-Joe sleeping holding a guitar , I will try and get a photo to post on the journal so you can see what I am talking about .
I weighed Sammy-Joe this morning and wasnt happy with how much weight he has lost ,I hope he doesnt go on a down hill slide with that , lets hope my scales a wrong , although I can see from Sammy-Joes clothes that things are looking much bigger on him .
Anyway , tonight is Christians Basketball game and tomorrow another day of basketball , last week they lost , hopefully this week will be better for them , oh Christian had a hair cut I will try and get a new picture of him also , he is so gorgeous looking , a real looker , , I am glad that all hasnt started happening yet, the girlfriend thing I mean , , he has plenty of time ,, I keep telling him anyway , he is only 13 , he also has a basketball match at school today for his school , I think he is going to be pretty exhausted by the end of it .
Have a good weekend and I will try and update over the weekend if I have some time up my sleeve , these days there is hardly any quiet time left for me .
Maria
ps we already have 10 postcards , remember our target , Sammy-Joe is enjoying them all so far , thank you to all of you have sent postcards to him . he loves collecting them .

Tuesday, August 1, 2006 4.45 pm

Sammy-Joe has been much happier lately , must be all the prayers , thank you to everyone that has prayed ,and thank you for all the cards that have arrived lately please remember to leave your email address , I do plan to write to each of you that have left messages and say a personal thank you , I will get around it eventually , so please do leave your email address .Also you are most welcome to email us anytime.

Here are some photo s that I took today of Sammy-Joe , he wanted me to show everyone his "POLLY PEG "because soon Polly peg will turn into a button , we have appointments all next week to see all the doctors , I cant believe its been six weeks since his hospital discharge .



Look at Sammy-Joes hair ,isnt it funny , he was holding the peg , he wanted me to feed him

Polly Peg , Sammy-Joe wears a belt around it to keep it tucked in


Sammy-Joe is a gorgeous boy



Sammy-Joe and Daniel , he loves playing with Daniel

Monday, July 31, 2006

Today was a busy day of cleaning and washing up , Sammy-Joe tried to help me but got pretty tired and fell asleep once Christian left for school , maybe because he got up at 4 am to play , anyway it gave me lots of time to clean the mess ,, there was lots to do , I finished cleaning about 11 am when Daniel arrived , Sammy-Joe and Daniel played together to about 5 pm , at lunch time , my friends came over to have some lunch with me , they brought over pumpkin soup and some croissants , ham and cheese , I dont usually eat lunch , its something that mums do alot I guess and that is skip meals , which isnt good for us , any way this time my friends had other plans , all of them work , they wanted to spend a couple of hours of their days off with me , it was fun and I enjoyed their company . Life is always so different in my house and some of my friends have commented on how different it is , because of the darkness and also because of Sammy-Joe , he gave each of them big bear hugs and I think they fell inlove with him all over again , he had a pretty busy and calm day , just doing the things he does , he likes to leave traces of where he has been all over the house , like toys from one end of the house to the other , I guess this is his world , he doesnt have any where else to move , I would really love to one day be able to build a room for him , its so hard on him being in the one place .
thank you for all of your prayers ,,
hugs
Maria

Sunday, July 30, 2006 4:04 am

I am not having a great night , Sammy-Joe has been not well for the last two days , on Saturday morning he woke up vomitting , this morning he is just very irritable , havent had a lot of sleep lately and its starting to take effect on me .
this weekend would have been probablyone of the worst weekends for me in a long time , please pray for us because things need to change for the better , I know that I always smile my way through things , but behind the smile lays a broken heart , a heart that aches for the loss of a so called ""normal life "" WHAT EVER that may be and although I am grateful for everything I have and for having my beautiful family , I am also very saddened by what we have been through , and weekends such as these remind me of that .
Someone said to me recently ,"" to give something life you must breath life into it ""but I think thats what I have been doing , I know this person is right because its what I have been doing for the last 17 years , and I know that I have tried everything in my power to make our situation easier and to make Sammy-Joes and Christian s life easier , I know I have done all of that , I need prayers to keep giving me the strength , prayers for my children to have a better quality of life , especially for Sammy-Joe .
Maria

Friday, July 28, 2006

I would like to thank you all for stopping in and signing Sammy-Joes webpage guestbook , thank you so much for all of your support ,we are so grateful and we appreciate all of your kind words , well wishes and prayers .

The last couple of days have been pretty hectic with Sammy-Joe , his behaviour has altered in many ways , he will sometimes be calm and quiet and then other times he will be like a mini tornedo , picking things up and throwing them , alot of the times he just wants to play quietly , but then around 3 pm , he can feel the sun going down and he starts to do all the strangest of things , he will go around the house collecting items in his shopping trolley which is my laundry cart , and he will take picture frames off the wall mainly the ones of Christian cos he loves his brother so much ,he puts them all in my bed ,, he then gets all of his toys and he will sit in my bed with all of them , creating the largest mountain of toys in my room ,, lately he has been going around the house carrying a little bowl with a lid with one of our gold fish in it , I am sure the gold fish is on an adventure with him as he goes around the house , with it showing the fish everything he needs to see , he is so funny ,, no one makes me smile and laugh the way Sammy-Joe does ,, when he goes to sleep I will sneak the fish back to his home , I am sure he has had enough of Sammy-Joe showing him all the photos , talking to it and showing him all of his toys ,, its funny because I thought the fish would be stressed out , but its swimming calmly looking quiet content , Sammy-Joe is due for his afternoon nap soon , I will take the fish and put it back in our tank , once he is asleep , we have nine fish which Sammy-Joe has named , we have Dorothy the one he is holding, Tommy , Leila , phil and lil and chucky , then we have blacky , princey and rover , I laugh at Sammy-Joe because sometimes I tease him to see if he has forgetten their names , and no way , he will be very angry at me because he thinks I have forgotten them .lol,,
Christian has a basketball game tonight , and tomorrow , I will keep you all updated on his games and also on Sammy-Joes progress .
before I go , I just wanted to add that Christian this morning , said ""Icannot ever imagine life without my brother ,, I love him and I think he is pretty MAD "" which I think means good ,, anyway , life in the Liistro home is always interesting and full on .
I will add some photos tomorrow when I have a chance .
bye for now
please have a good weekend .

25th OF July 2006 Tuesday

I have been getting some critism lately on the way I have been raising my children , not from anyone that has been reading this journal , but from people that have no idea what our life is like , making little comments on Christian and his behaviour , I asked these people to step into our shoes for just one moment , this way they can see whats its like for us , all families experience big lifestyle changes and challenges when children are born , so imagine when you have a child with a disability , there is usually a greater loss of independence and freedom to do with every member of the family .
Life becomes extremely busy , every family has its uniqueness in the way they manage their time , and ours certainly is harder , so please to those people who made a comment or judgement on my parenting , I ask you please to tell me to my face and also do not judge me unless you have lived in my shoes and in our shoes and in Sammy-Joes and Christian s shoes . I dont like to write negative things in my journal , but I do believe its important for me to be able to speak my mind when it comes to showing people the reality of our situation and I do speak for all parents that have a child with an illness or disability , life is certainly not all rosey and of course there will be times where certain routines get broken or changed to be able to cater for the families needs , so please do not be quick to judge unless you your self actually know what its like to live in the other persons shoes ,, we each our own have struggled in every way to try and accept all that has happened around us and to help Sammy-Joe to accept and be accepted in society .We love him and will continue to do all that we can to keep his survival going , we absolutely love Christian and make sure that all of his needs are met also , we adore both him and Sammy-Joe equally and each and everyone of us has adjusted to Sammy-Joes needs and made it possible for all of us to live within his needs without trying to forget Christians and our own , we love being a family and will continue to be as long as faith love and hope and strength is within us .
Maria
There are no perfect or normal families , i know this for a fact because it would mean we would all have to have no faults


Saturday 5,30 pm 22nd of July 2006


wow , Christian is a star , he was amazing today on the basketball court , I hope he keeps it up he scored 20 points for his team , three 3 point shots , he finally has his confidence back , we had a good talk in the car before the game , and something just clicked in him on the court ,what an amazing effort ,, well done ,, I just had to let you all know ,, also they won the match , it was so much fun today .

Sammy-Joe has been a little off colour again today , yesterday he just wanted to lay around again , and then at one stage he just wanted to go on a mission to destroy everything in site ,, I am not sure what he is trying to tell me , but he hasnt been as chatty either , I will have to think what is different , on Friday he saw his doctor and he did tell her he has a sore ear , but she didnt think he needed antibiotics , just suggested panadol if he complains and to keep an eye on it .

well I just read Joes journal entry and it really saddened me , because I know what he is saying and feeling , its very hard and we have no normality in our lives , non whats so ever , we havent got the "normal "" routine , which I really do hate that word "normal "" I try and use words like regular , constant , or ordinary , but today I will use it this way it best describes it to everyone , because it is such a common thing for people to say when something is the same , or has a sense of sameness , but we dont , things are constantly changing around us , people are constantly changing around us , its so hard for us to keep friends because of it , our social world lacks because we cannot do the same things that others do , I will write a bit more about this tomorrow , but for now I must go and attend to Sammy-Joe as Daniels six hour shift is nearly up , and he must go, so its full on again for me , Ihavent even cooked tea because I just got home from Basketball .
hope you all enjoy reading the journal and thank you for signing the guestbook , please let me know you have been here by signing .
take care Godbless and have a wonderful weekend .
Maria


Friday the 21st of July 2006 10 .41 pm


Hi EVERYONE
this is Joe , I am writing the journal tonight , Maria has gone to have a shower , she deserves a break from writing the journal sometimes , so I have decided its about time I write in it .

I came home at 5.30 pm from work this afternoon , I am feeling pretty tired and stressed out , I feel very sad cos of our lives , why is this happening to us , Why why is my poor son going through this very bad time , It is a very hard thing for him to go through , it is all very hard for us as a family to watch him go through this , its been very hard for Sammy-Joe because he loves food with a passion and its been the hardest thing for him ,he loves the smell of food and I know he will one day taste food again the right way , at the moment he has been getting used to the feeding tube , and so we all must get used to it
Tonight we went to watch Christian play basketball , he had a great game , I know one day he will be star , I am very proud of him , I know deep down inside he plays for his brother , he loves Sammy-Joe ,, I sometimes wonder what it would be like if Sammy-Joe could be like a regular child , he would be laughing and joking amongst the kids , he would be so happy , I know he is happy and loves life , but I sometimes imagine what he would be like , he is 17 and if he were a regular child he would probably be working part time somewhere , he would be dating , learning to drive , there are so many things he is missing out on , he would probably be planning his future , he would be in a sport , I know we cannot concentrate on what we dont have , but its too hard , sometimes it just doesnt seem fair . I know also Sammy-Joe would be cheering his brother on , he does now , the problem is he doesnt get to go to the games , he did manage to go to a couple , but didnt exactly cope with all the lights and noise .
I also think Christian and Sammy- Joe would probably be even closer and sometimes go out , or play competition sport together .Christian has missed out also on having the older brother he shouldve had , but I know he loves his brother just the same , but he also sometimes wonders what it couldve been like and what it really is like .
Sammy-Joe is Sammy-Joe and he is our special boy , our gift from God , alot of people say that these kids end up in the right families , I hope and pray that I can continue to feel strong and stay positive on that aspect , I am very scared at times that the future is too scary .
I hope Sammy-Joe pulls through all this and he regains his ability to eat I love him so much and I would do anything to take away the pain , I would give up anything to make him better again , I love my family and would give up anything for them , I love them
please pray for us , please pray for Sammy-Joe and please leave a message in the guestbook to let us know you have been here , thank you for reading my journal entry

Sammy-Joes and Christians dad ,,,,JOE

Thursday the 20th of July 4.12 pm


The Objective of caring for Sammy-Joe or care giving for Sammy-Joe is to create opportunities for Sammy-Joe to feel secure , comfortable connected with his care giver , for him to feel satisfied , happy , and to give him enjoyment , these objectives are achieved by acknowledging that Sammy-Joe has a life threatening illness and that most of his life he has been frustrated and worried about the light and that his past experiences cannot be changed and so he holds alot of fear inside him and anxiety , but the quality of life can be improved and managed differently now , the factors of his life can be changed such as internal enviroment ,external enviroment , communication , activities . care love support and management of the illness and safety enviroment , when these factors are manipulated to support Sammy-Joe , there is a possibility of either reducing or intensifying his behaviour , this is why you must try and remember what triggers him , this way his behaviour can be managable , I THINK ALOT of people dont realise this and sometimes forget what his triggers maybe , a methodical problem solving approach needs to be applied ,All aspects of his illness are to be considered eg ,,,, his light sensitivity , his autistic characteristics , his poor health , his tiredness , his loss of skills in many of his areas of life , such as now his inability to eat food , and his immune system play a big part , the fact that he is a teenager , but has a child like mind also , the fact that his home is not a school , institution ,or respite home ,it is his home , so he has set many routines for himself and if you try and change all of this he will start to change his behaviour towards you .

Today Sammy-Joe has slept most of the day and this could be due to the light exposure that he may have experienced by going out of the house the last two days , he said this morning ""too much light "I AM trying to also write in the journal so that carers and workers that will be in contact with Sammy-Joe for the first time can identify what I am saying , this way it can also be used as a guide to understand him more , it will help guide the carers in working with Sammy-Joe ,
Trichothiodystrophy has a group of symptoms and signs Characterised also by te triad memory impairment , intellectual deterioration and personality change ,(my goodness ,, I do sound like a doctor now ,,,lol )many different symptoms can arise early and early diagnoses can help to manage some of these symptoms , because the more you understand the condition the more it makes sense ,, There is no known Cure for TTD , so this also helps you understand how rare it is .
one of the most common features ,, and there are a few , but the one I have noticed the most with everything that I HAVE read and looked into is the loss of speech and loss of language skills , and loss of some cognitive abilities , in alot of the kids , to compensate for the loss , they will attempt to make their needs , feelings and values known through their actions , so they may scream , or shout out repitively ,they may pinch ,punch and bite you , kick or swing their heads towards you , which Sammy-Joe did for awhile because he was so hungry , and he couldnt tell us what was happening , it is important that all these actions be recognised as a form of communication rather than as a''PROBLEM BEHAVIOUR''

I think I get tired of hearing that Sammy-Joe is naughty , or that at times he isnt controlable , the thing is alot of the factors in his health and the way he is feeling and life contribute to his behaviour .

Please please use compassion ,understanding patience and love and most of all kindness and gentleness when dealing with Children with TTD , because they too have feelings and they too want to be heard .
please have a good day and I cant wait to read all of your messages to Sammy-Joe , he loves it when I read to him .
Maria


we are heading to The doctor tomorrow for his regular check up , his pediatrician will see him , hopefully all will be ok tomorrow and we wont have any dramas ,
11.41 pm
Sammy-Joe is asleep ,I just got back from having my hair done ,its been my first outing in a while , my friend Heidi took me to the hairdressers in Eltham , Rose is a lovely hairdresser, it felt good to be out for a bit because I dont normally get a chance to get out , its been a long time . Sammy-Joe was home with Daniel , Joe , Brandon ,Christian and Kyle , they had a bit of a boys evening , had fun I suspect , they all looked pretty pleased with themselves when we got back , SammyJoe is sleeping and now Christian has finally gone to bed , he said he was worried about me because Iwas so late back , it was good to also go and sit down and have a cuppacino with Heidi , she has been a great friend , its nice to have some adult time to , I sometimes feel like I am forever talking about the kids , disability and school , hospital , illness , it was nice to just sit and listen to her and the other girls in the salon ,

thank you to every one that has left messages in the guestbook , we love them .




Thursday the 21 st of July 8.18 pm


I know , I feel very sad at times , but I must focus on all the positives ,
Sammy-Joe has brought me so much Joy in so many ways , he makes me smile ,
laugh and cry like no one else I know , and I know that Joe and Christian feel the same way about him , so I thank God every single day that
I am with him and I know although it is hard at times , (especially when he is having bad days , which sometimes its more than the good days )I know I only will
have him for a short time so we must make the most of what we have together
.he absolutely loves me and idolises me , he loves his dad and he loves his brother so I cannot let him down , I have to do
everything in my existance to make things work for him .make his life comfortable , joyous and memorable
Thank you so much for all of your prayers , thoughts and well wishes they
mean the world to me

Wednesday the 20th of July 11.04 pm

We had another busy day again today , we visited Sammy-Joes school today , at first Sammy-Joe was pretty upset because he thought I was going to leave him there , but he then settled down because he understood that I wasnt going anywhere , and that we were just visiting , he was happy to see everyone and to say hello to everyone , we even got a few smiles when people said hello to him , the teachers , therapists and staff at the school are all fantastic , very caring and loving people that have really understood his situation , it was good to catch up with everyone there , I was so happy to see everyone .
Sammy-Joe wanted to go to the library so he could borrow some books and some video tapes , he also borrowed a small toy , he enjoyed talking to everyone in the school and when it came to wheelchair clinic appointment he was almost asleep , we stayed at the school for about three hours and he seemed to enjoy it , so I guess next week we will try and visit again and this way he can start to get used to going for a few hours a week , I think its important for him to stay intouch with everyone in the class and at the school .
Everyone is wonderful there .
Sammy-joe was all tired out when we got home , he fell fast asleep for aboutfour hours in the afternoon , from about 4 pm to about 8 pm , he stayed up for a little while longer and then he went back bed ,I think the last couple of days have tuckered him out .
I forgot to take my camera today so I didnt take any photos of the school , but I will remember next time , this way you are able to see photos of his gorgeous school area , the school is fantastic I just wish Sammy-Joe could one day get to the stage where he may go even twice a week , but I guess thats wishful thinking .
Maria


Tuesday the 19th of July 5.27pm


What a morning , at first I WAS worried that Sammy-Joe wouldnt behave for his blood test but it was great,, he was well behaved !! Sammy-Joe had a good morning at the hospital , the Clown Doctors came to the rescue and helped out with his blood tests , Andrew from pathology ,( Sammy -joe calls him the ""blood doctor or doctor blood )""is fantastic , he always is so good with Sammy-Joe ,and Sammy-Joe is always so good with him , thank goodness for these great people because they just make life so much easier and happier for the kids and their parents , here are some photos for you to enjoy , i HAD a great time watching Sammy-Joe with the Clown Doctors




The Clown Doctors are so fantastic !!Sammy-Joe loves them
they sang songs and encouraged Sammy-Joe to do the same ,it also calmed him down so that the procedure was easier .





DOCTOR fAIRY fLOSS (Clare ) AND DOCTOR tICKLE(David )

Andy is so good with Sammy-Joe and so are the Clown Doctors ,, thank you guys for making life alot easier whenever we go to Hospital .

Sammy-Joe is the only child I know that wants to actually be admitted to hospital , he kept asking for a hospital bed kept saying ""want 5east go hospital bed "' we calmed him down and he sang songs and we sang "You are my Sunshine "to him and then someone asked "which one is your favorite Super Hero?" and he said "MUM" I laughed I thought he was going to say "BATMAN,SPIDERMAN,SUPERMAN , super grover <"but no,,, he said "MUM"
how sweet is my boy !!



Andy was great with taking blood in the dark , this whole procedure makes Sammy-Joe easier to deal with if everything is done in a darkened room , and having the Clown Doctors there is fantastic , they truelly help us each and every time , they are fantastic ,!!

please visit the Clown Doctors and help support this wonderful group of people

they are a group of wonderful caring people that help put smiles on childrens faces .
Thank you guys
and thank you ANDY FOR ALL YOUR HELP .

We also went to 5 east to visit everyone , but Sammy-Joe got himself all upset because he wanted a bed and wanted to be admitted , he loves 5 east ,he is so funny , Some of the nursing staff came out to say hello , but Sammy-Joe got himself all upset because he wanted that hospital bed , he honestly thought he was going to stay again , anyway , we have so many hospital visits to attend to in the next few weeks , we better try and see if the Clown Doctors will be around .


Christian has had two good days at school , he seems to be back on track , he is very excited about basketball again , and seems to be more in the sporting spirit again .

Tomorrow Sammy-Joe and I are going into School , Sammy-Joe hasnt been there for a while , we will be going to wheelchair Clinic first and then off to his class room , we are going to try and see how he goes with this and if he will manage , we will start off slow , even he manages to go once a week .

Tomorrow will be another big day for Sammy-Joe , he is currently sound asleep , and has been since 3.30 pm and its after 5 pm now , looks like we may have another night of not sleeping especially if he is doing all his sleeping now .

Joe is back at work this week , he hasnt been too happy lately as he is concerned about alot of things ,he is very worried about what the future holds for Sammy-Joe , I try and live day by day , but I do know I have to think reality .

thank you for stopping by , please dont forget to sign the guestbook , Sammy-Joe loves me reading the messages to him .
Maria

Tuesday 18th of July 2006 7.48 pm


Didnt get much sleep , probably about four hours because Sammy-Joe was restless all night ,he was super sensitive with his hearing and he could hear sounds that I had to really concentrate hard on trying to hear , he kept saying ""WHATS THAT <<< WHATS THAT SOUND "",, all night long , he finally fell asleep around four am , and now he is sleeping soundly , I have to really try to get him to the hospital today , we have been avoiding this bloodtest for three weeks , I know what they are looking for they are not going to find , but the doctors here seem to think they should test him anyway ,I just dont see the point because Sammy-Joe has been through so many tests its upsetting him ,just thinking that he has to go back , I would like to see all the nurses and staff , they are so nice and I have been missing them the last three weeks , its amazing how much love and care they give , they are amazing people thank you 5 east for all the love you have shown us .
here are some photos of Sammy-Joe wearing his "Cowboy hat with his batman cape , " and his SUPER HERO GLOVES"" HE IS SO FUNNY


hugs for mum


hugs for dad



superhero smiles because of his superhero gloves ,,lol
he is so funny , he wont part with his superhero costume , I have to ply it off him everynight and we get into a bit of a kerfuffle ,,lol,,





Monday the 17th of July 2006 . 11.13 pm



Sammy-Joe has had a quiet and Calm day today , he watched 101 dalmations at least ten times , he loves it !!He also played a bit in his room and played with about twenty balloons all day , he also read some books and fought off some invisable monsters called ""Fraggils ",, he makes me laugh so much , its so good to see him doing lots of pretend play , his carer came this afternoon and also his three hour evening carer on a Monday night and they both commented how good he is and wonderfully calm he has been today , I would like to start up a postcard campaign where ,, if it could possibly start from now , where people from all over the world send him postcards from their places of residence , our target is to receive 100 postcards by December and one of Sammy-Joes friends promised to keep track of this for us , she thought it would be a great idea if we could put a book together for Sammy-Joe with all the postcards from different places all over the world , this way Sammy-joe can see the world through everyone elses eyes and we could read him the stories that come with the card ,I thought it was a great idea and I am pretty sure he would get a kick out of it ,he already has lots of Happy Mail postcards which we would include in his book for him ,which he doesnt ever want to part with , he has a box full of Happy Mail , so please send some postcards of the places you would like Sammy-Joe to see ,it would be something fun for him to do indoors and I am sure he will get a kick out of receiving them at his front door , we will let you know , when the cards start arriving .

Monday the 17th of July 2006 7.38 am

Not much to report apart from Sammy-Joe having a terrible cough all weekend , he has had a strange kind of weekend , has been sleeping a bit during the day and been up most of the night . Christian is off to school again today , and Sammy-Joe and I will be spending lots of time together , hopefully the carer will come this afternoon , because myhouse is in a big need for cleaning , vacuming and washing the floor is the first thing on my list , I cannot even start to begin unless Sammy-Joe is occupied with someone else , he has been very clingy with me lately , he said he is afraid of monsters and wants me to keep fighting monsters off , so you can imagine what I look like fighting invisable monsters off , whenever he tells me ones around , I am not sure why he has begun this type of pretend play , but I guess he is worried about getting sick again .
I will try and update later today when things seem calmer .
Maria

Saturday the 15th of July 2006 10.28 am

Sammy-Joe seems a little unsettled today , he has been changing hats and shoes all morning , after his feed through the Polly Peg , he said he felt nauseas and wanted to vomit , he has had a low grade temp all night , but otherwise I cannot seem to find any other symptoms , although he does have a runny nose and has had a cough for the last three weeks . I will keep an eye on him today , he will have a carer for the time that I go to basketball with Christian , Hope Sammy-Joe stays calm when the carer is here , alof of our carers leave because they say they cannot handle Sammy-Joes behaviour , but his behaviour isnt that bad , he sometimes becomes a little frustrated , but who wouldnt imagine being in his shoes , he cannot go outside during the day , he has lost his ability to chew and swallow food and he is limited with what he can do in such a small area , my house is very small and he has access to the whole house , which isnt much room at all and at night lately its too cold for him to go outside because its winter here in Australia , also he has lost someof his ability to speak , so I think any one would be very frustrated under these circumstances , his house is not an institution , its his house and he should be able to feel comfortable , free and be happy to roam around all over the house , which I do explain to the carers in detail , for those of you that have been to my house , I am sure you know what I am talking about , and for those of you that know me , it will be easy for you to understand what I am saying .
ANyway , I hope and pray that Sammy-Joe has a good weekend , I hope you all have a good weekend and I will update on sunday night , hopefully with more photos , my cousin Kim should be coming over to visit us this weekend , I ll try and get some photos up .
Maria


Thursday 13th of July 2006 9.31 pm


A colourful evening







Sammy-Joe s superhero hat





Sammy-Joe didnt go to school today , he wanted to stay home with me , so we didnt get to go visit ,we will try again next week , it was extremely cold today and so he decided he just wanted to rest at home ,we didnt have carers again today and this made Sammy-Joe a little sad and he kept asking me if anyone was coming over , so when Jerildene came over he asked me "JERILDENE CARER OR FRIEND?" Itold him that Jerildene is our friend and I thought it was cute how he handled the fact that she wasnt a carer because he let her go when she needed to come and sit with me in the kitchen , its so funny , he is so smart also , he has worked out a way to make his speech clearer , he clenches his teeth this way he doesnt struggle to speak , his words seem to come out clearer , Sammy-Joe is so clever , I am very proud of him and he always makes me smile .
I am also very proud of Christian ,he is growing up to be a kind hearted sensitive young man that understands the true meaning of life , he also understands that family and friends are the most important thing in life .





We have had a wonderful day today , Sammy-Joes behaviour was wonderful , he wanted to be a superhero all afternoon , so he dressed up in a cape , green hat gloves on top of his gloves and put on "superhero shoes ", (dads SHOES)( he must think his dad is a superhero )anyway , our friend Jerildene came over for a visit and Sammy-Joe was wrapped ,he loved having her there and wanted to play , he even managed to eat three pieces of Pizza which I vitamised for him , Joe thought he was doing it because Jerildene came to visit , I think he was doing to show her that he truelly is a SUperHero , he is amazing !!
Jerildene is so nice , she seemed very relaxed to be in our crazy house hold and seemed to enjoy being with us , we enjoyed having her with us . we also watched the Dylan Story together ,thats the fifth time I ve watched it and it still makes me cry . Anyway here are some photos that I wanted to share with you all .
Joe and Christian were putting a race track together for Sammy-Joe , my house is like a toy house , toys are in every corner , crook and cranny , I keep tripping over toys !!
Sammy-Joe loves them .

Playing together



having fun with superheros is exciting


Sammy-Joe is so funny dressed up as a superhero , life with Sammy-Joe is so much fun



Sammy-Joe has a rest after a busy day



Superheros get tired too !!!

finally caught Christian on Camera



Almost done putting the race track together





Thursday 13th of July 2006 8.31am


Not much to report this morning , apart from the fact that Sammy-Joe woke up at 4 am again and has kept me awake most of the night ,I probably got about two hours sleep again , it seems to be a bit of a pattern ,he will have one great day and one not so great day , today maybe the great day as yesterday was one of the not so great days , anyway , at the moment he is in his room playing with his toys and having a party again , he has a party hat on and is setting up the room for all of his toys , , he has a thing about hats and likes to collect them , yesterday he had an old hat on which he calls ""his old MANS HAT""AND ALSO HIS FAVORITE YELLOW HAT AND A PARTY HAT ,,he is so funny at times , the world through Sammy-Joes eyes is full of wonder , colour and play !!
Here are some photos these were taken yesterday evening , he spent the day again in his pyjamas the bright yellow ones , today I have to convince him that he cannot wear these after his shower ,, going to be a bit difficult , luckily for us my aunty Nancy bought him a few extra pyjamas , ones with elephants and ones with hippos , maybe he will want to wear them , he also has some bart simpson ones , I have to try and buy him some Garfield slippers and garfield pyjamas , hopefully there will be some in the shops now , please be on the look out , if you spot them let me know where they are .
Christian hasnt been too well and yesterday we went back to the doctors for him , he is to take the rest of the week off , hopefully that wont effect too much of his grades , I am hoping he can catch up , next week is going to be a busy week for us all , hospital appointments , basketball training and lots of other appointments to attend to .
TODAY Sammy-Joe and I will go into his school for a couple of hours , at least he will get to say hello to all of his friends and some of his teachers , its been a long time since he has been at the school , I hope he will be ok , i intend to take him in more often and sit in classes with him .
I will update tomorrow , because Ithink we will try and least go once a week to get him some socialisation , because he is very isolated at home a lot , it will do him some good to see his friends at least once a week , providing he feels well .

Sammy-Joe loves Garfield


Sammy-Joe and "HIS OLD MANS HAT"



All Partied out



dont forget to sign the guestbook and let me know you have been here .






Wednesday 12th of July 2006 8.32 am


Sammy-Joe woke up at around 6 am this morning after falling asleep last night around 11 pm , the first time he has slept through a whole night , he still isnt too right in the way he is feeling and seems to be fighting off another cold , well it is winter and Christian is so unwell also , both of them are on antibiotics , Sammy-Joes Carers have been sick also and I have had no carers this week , this morning after I gave Sammy-Joe his feed through Polly Peg , he wanted to play for about an hour , Christian had set up as a surprise ,while Sammy-Joe was asleep , Sammy-Joes Thomas the Tank Engine track , so this morning Sammy-Joe was extremely happy to see it , he was excited in fact ,, he played with it for about an hour and then, he played on the computer, the PlaySchool game for another ten minutes , he seemed completely exhausted after that and moved into my bed for the morning , he is now fast asleep completely covered by his Love Quilt and many toys , he seems extra light sensitive today also as he is wearing his gloves , hat and shoes in bed , usually a sign that he wants to be completely covered and protected away from the light and stay warm ,, I took some photos this way its easy for you to see what I am talking about , sometimes I think I go on and on about things ,describing things over and over ,but at least with a photo you can see what I mean and a picture speaks a thousand words anyway ,,,he loves his bright yellow pyjamas and yellow hat , I think its his way of making a statement and having sunlight in his life , he always says that"" yellow is the bright shining sun "" and immediately after that he says ""the sun hurts me ""so he knows the beauty of the sun and he also understands how dangerous it is to him .
anyway , enjoy the photos , I will keep you all updated with Sammy-Joes progress and let you all know how Christian is doing , poor thing he is so sick right now , he keeps saying ""Now I KNOW HOW SAMMY-JOE FEELS EVERYDAY , THIS IS SHOCKING "

"Sammy-Joe makes a statement in yellow "






Playing Happily with Thomas the Tank Engine



He loved his surprise ,, good on you Christian for being a great brother !!!



falling asleep in my bed , looking as snug as a bug



please dont forget to sign our guestbook as Sammy-Joe loves me to read him the entries and please remember to also visit Sammy-Joes friends
Bethany

Brooke

Collin
and

Dylan Hartung

and
Lilly

Tuesday 11 of July 2006 8.53 pm

Sammy-Joe didnt have his blood test as he fell asleep around 9 oclock and didnt wake up until one so I rearranged it to next tuesday , I dont think he is well enough this week .Christian is still unwell , I took him to the local doctor this afternoon and he is on antibiotics because he has an ear infection , throut infection and chest infection , he had a tempreture of 38 all day today .He slept until 3 pm after waking at 9 am and then going back to bed because he felt nauseas .
today I had the pleasure of speaking to Julie Presley Collin and Regans mum , she is gorgeous , she called me from the USA to have a chat , we have so much in common , Collin and Sammy-Joe do so many similar things , and everything she talks about I can relate to , I understand the frustrations and the joys , I understand everything that she is talking about being indoors while everyone else is outdoors , its just not fair .We had a bit of a laugh because we thought about all the funny things our kids do and then we both got sad because we wouldve met each other soon , if not for whats happened to Sammy-Joe , we wouldve been on the plane going from MaryLand to Campsundown and then to Julies House ,, we feel so cheated that we havent had our chance , I do hope one day we get to meet . I love her so much and I love Collin , Regan and Jason too , her whole family I know I would love them all ,,including all of her extended family .please remember to pray for Collin also everynight , because he goes through the same things Sammy-Joe does , they both have Trichothiodystrophy and I believe to the same degree.
Collins Page

I also would love you all to say a special prayer for

Brooke

and please also visit her website , she has been an inspiration to us all and truelly a miracle person

and dont forget my other Miracle boy
Dylan

Tuesday 11 of July 2006 8.53 pm

Sammy-Joe didnt have his blood test as he fell asleep around 9 oclock and didnt wake up until one so I rearranged it to next tuesday , I dont think he is well enough this week .Christian is still unwell , I took him to the local doctor this afternoon and he is on antibiotics because he has an ear infection , throut infection and chest infection , he had a tempreture of 38 all day today .He slept until 3 pm after waking at 9 am and then going back to bed because he felt nauseas .
today I had the pleasure of speaking to Julie Presley Collin and Regans mum , she is gorgeous , she called me from the USA to have a chat , we have so much in common , Collin and Sammy-Joe do so many similar things , and everything she talks about I can relate to , I understand the frustrations and the joys , I understand everything that she is talking about being indoors while everyone else is outdoors , its just not fair .We had a bit of a laugh because we thought about all the funny things our kids do and then we both got sad because we wouldve met each other soon , if not for whats happened to Sammy-Joe , we wouldve been on the plane going from MaryLand to Campsundown and then to Julies House ,, we feel so cheated that we havent had our chance , I do hope one day we get to meet . I love her so much and I love Collin , Regan and Jason too , her whole family I know I would love them all ,,including all of her extended family .please remember to pray for Collin also everynight , because he goes through the same things Sammy-Joe does , they both have Trichothiodystrophy and I believe to the same degree.
Collins Page

I also would love you all to say a special prayer for

Brooke

and please also visit her website , she has been an inspiration to us all and truelly a miracle person

and dont forget my other Miracle boy
Dylan


Tuesday July the 11th 2006 6.37 am


Goodmorning or goodevening in different parts of the world ,, Sammy-Joe has been unsettled again all night long , he probably only slept about three hours , not sure how I am going to take him to the Hospital today , I am so sleep deprived right now , but I cant get back to sleep , Christian hasnt been well either , I am going to see how he is feeling , his probably going to take another day off school cos he is so unwell , which means he will need to catch up again with his school work , alot of sacrifices are made in the whole family when there is an illness involved , the last few days have been so hectic for us , sometimes at the end of the day we feel like we have chased our tails round and round again ,, housework is the thing that is getting left lately , my house is a mess , but Sammy-Joe and Christian are our priorities , we need to make sure all of their needs are being met , when Sammy-Joe is so unsettled its hard to get anything done , I havent had a carer here for the last three days as one of his carers couldnt make their shift and I couldnt find anyone to replace them , today is the same , no carers for today , Daniel will come tomorrow for his shift and then hopefully I will get some things done around the house , its been pretty hard to get back into a routine because we have had to establish a new routine because of all the feeding with the peg .
Sammy-Joe is sitting up in bed now calling out to his dad ""wake up Daddy ,, Daddy ,, wake up !!" who needs an alarm clock when we have Sammy-Joe .
I will be updating the journal late on today once I get back from hospital , I hope Sammy-Joe is feeling a little more settled to have his blood tests done , otherwise the whole of the ground floor will be hearing him and everyone will know that Sammy-Joe is there !!>>>LOL<<<, I think most of the hospital staff know him now anyway ..
please have a good day and I will write soon ..
hope you enjoy these photos ..








Sammy-Joe chose these photos , he wanted to post them on here

monday 10th of July 2006

Last night on Channel Seven at 8 pm there was a documentary on Dylan Hartung , it was so good and it brought me to tears , not only because he is so gorgeous but because its so unfair what his family is going through , Melissa said so many things that I can relate to and all of the things she said reminded me of the things I say about our situation also , I feel we are kindred souls walking on the same path , they are a brave and couragious family and I pray that God finds a way to make a miracle happen for our beautiful boys Dylan and Sammy-Joe , Melissa is so much like me I was so amazed at how much we think a like , I have met Tim and Cain personally and sometimes its almost like I know exactly what and how they are all thinking , including how Cain feels , because Christian is going through similar . Anyway , I pray for them everynight because I know truelly how they are feeling .
I wish God could hear our prayers and help a miracle to occur for our children .

Sammy-Joe hasnt been the best lately , he has been so unsettled and very tired , yesterday he slept for twelve straight hours , today he seemed calmer , but still not himself , tomorrow we are heading for the hospital , its going to be so hard to convince him that we need to go .
he needs to have a blood test done , in about two weeks all the outpatient appointments start .
Polly Food Peg is doing ok , today when I showered Sammy-Joe it almost looked like Polly was going to pop out , it frightened me abit , but I rebandaged the area and hopefully it will be ok , Sammy-Joe is such a brave boy ,he is also trying very hard to taste food , today he tasted two tablespoons of blended riavioli and had five tablespoons of vitamised cooked califlower , he seems to managing it ok so far , so even if he gets to taste food I am happy , even it is such a small amount , I have been praying so hard for a miracle, his salvia around his throut area seems to have cleared up with the antibiotics he was on for his chest infection .

Christian hasnt been too well either , he was home today with a bad head cold , not sure if he will go to school tomorrow , the head cold has made him miserable and he is developing a cough now .

Oh well ,Italy won the world Cup , and alot of our italian friends are extremely happy , we are Australian Italian so we wouldve been happy either way even if Australia made it to the world cup .

There has been a lot of things happen in the last three weeks , I cannot get over how life changes in such a short space of time , I am so sad about us not being in America at this time , by now we would ve been still in Maryland Bethesda the National Institute of Health , and we would ve already been getting ready for Campsundown ,how sad is this year for all of us , things have certainly changed , I have seen so much saddness , but I know I have learnt alot through all of this , Sammy-Joe is a fighter and determined and I am praying for a Miracle .
please keep us always in your prayers
Maria


sunday the 9th of July 2006 2 am


Sammy-Joe is awake and ready to rumble , he has been decorating the christmas trees and playing with his toys , I cannot believe he is starting to get into the routine of being up late again at night , he went to sleep at 10 pm and woke up at 1,30 am , I gave him a feed , his meds , changed him into clean clothes pyjamas the monkey ones that he loves , and massaged him and gave him a foot massage , he was so cute , he was giggling so much cos he is ticklish , yesterday morning my friend visited me , Heidi , she made a comment about Sammy-Joe which is so true , she said ""he is like a baby , innocent and pure , no malice and just plain innocent , it isnt fair that he has to go through all this , he is a pure soul "" and its true , he is , he is so innocent and has no bad intention in his body , he has no malice or bad thoughts , he is pure innocence , he is like a child when they are two or three years old and anyone that would wish bad things upon him is wrong , not that I think anyone would , but sometimes people dont know what they are saying or doing if they get angry at him , or say that he is being cheeky on purpose or doing something on purpose , because that isnt true at all , he is so gorgeous , even this morning in the early hours of the morning , wanting to just play , that shows you how innocent he is , its now 3.56 am and he has decided to go back to bed , his tummy is full because of the feed , its like he isdoing what young babies do , wake up for a feed and then after a play they get tired and go back to bed , or maybe like an older person , they kind of do the same , they eat , have a bit of a wonder around the house , do some gardening and then have a cat nap , I remember my grandmother when she was in her seventies , she had so much energy in spurts , just like Sammy-Joe , and then she would sleep in her chair . its so gorgeous , I love him so much , well I better get some sleep also , I suspect I will up again in a couple of hours .
Maria
Saturday, July 8, 2006 9.02 pm

Christian had two games of basketball , one last night and they won and today he played again and they won , I was very proud of him , I havent seen him play in a while due to Sammy-Joe being in hospital ,I missed watching him when we were in hospital , Sammy-Joe didnt have a good day today , he woke up feeling nauseas and wanted to throw up his feeds , he has only managed to have 1000mls today which is very low compared to his daily intake , he normally has 2400mls for his daily requirements , I am pretty sure he has some kind of ear infection because he has been complaining about his ear alot . Daniel was with him today , he is such a great carer , he got here at 12 miday and left at 7 which means I had plenty of time with Christian.Which is equally as important , Christian has been doing a bit of grieving lately and seems to be very frustrated , he has been taking it out on the basketball court , I can see some of his strength and determination and also alot more agression in his running , at least he is taking it out physically on the ball and not on anything else or anyone , I am so sad for him also because he feels the same as Joe and I do , it isnt fair that this has happened to Sammy-Joe and imagine being in Sammy-Joes shoes , being able to smell the food around you and not being able to eat it , he has lost the ability to chew and swallow but he hasnt lost his tastebuds , so that is the sad part of it all because he can still remember the taste of things but isnt able to control his mouth to have anything , yesterday he even struggled with the yoghurt and some egg , he got at least a teaspoon of each because he wanted to try it , I hope that one day another miracle accurs and he regains all the abilities he has lost .please pray for him like you have never prayed before and please imagine being in Sammy-Joes shoes and what he must be feeling .
Maria

Friday the 7th of July 2006

Yesterday Sammy-Joe had a busy morning , he wanted to do everything at once and was a little naughty , he also wanted to break things from his frustration , he kept swooping things off the table and kept saying it was funny , by the end of four hours , I was so tired from his behaviour I asked him to go to bed , he had woken up at 6 am and was full on until 10,30 am , he then fell asleep , I couldnt understand why he was so destructive because he hasnt displayed this behaviour for a long time , it took me the next couple of hours to clean up the mess he had created ,it also made me realise how small my house is ,,lol,, anyway , My friend Robyne and her little girl Ruby had come to visit us and Robyne said , ""This is the part that people dont realise about you , how much you put up with and how very patient you are ,, they dont realise how much of a full time job this is "" and its true , looking after Sammy-Joe is fullon , when he has bad days he really has some bad days , when he woke up later about 1 oclock , Daniel came over to help care for him , he was full on again , Daniel and I kept laughing because it was like Someone had switched a full forward button on for Sammy-Joe and he was in full swing , he wanted to do every activity you could find , he decorated the Christmas Trees three times , he played in his room , he played on the computer , he played in my room with his books ,he sat in my bed he played with the videos in the cupboard , he then played with the toy animals again ,, it was like he wanted to make sure he did everything at once , Daniel and him put some puzzles together, he then tired himself out again and slept from about 5,30 pm to 9 pm .
I am hoping that we have a better day today and that he is a lot calmer and possibly not on fast forward ,,lol,,
the only thing I can think of that is changed is the antibiotics , when he was going to sleep at around midnight he started to say ""Sammy-Joe worked too much "" his speech was very slurry and he was trying very hard to get the words out , he also kept telling me he was sick , I kept saying ""I know you are sick Sammy-Joe ,but you are strong and a fighter and you can get through this ,, you are my superhero , today you proved how strong you are ""

here are some photos of Sammy-Joe decorating the xmas trees , something he has been doing everyday for the last two weeks






Thursday July 6th 2006 8,55 am

Happy Birthday to my brother Claude , my cousin Daniel and My Cousin Frank , also A Big Happy Birthday to Collin Presley , he celebrated his Birthday on the 4th of July and we wouldve been there visiting him by now , but destiny had other plans for us , I am hoping that we will still manage to go next year , hoping that Sammy-Joe will feel better by then and no other regression stage hits .
ITS ALWAYS Christmas at my house lately , Sammy-Joe has madly decorated the Xmas Trees everyday , I unpack them every night and everyday he redecorates them and then he sings ""Jingle Bells and Merry Christmas ""
At the moment he is in his room throwing toys around the place, yesterday we had an incident with'' POLLY'', we didnt clamp it tight enough and after his feed Sammy-Joe kept saying he was soaking wet , well when I checked out what was wrong all of his feed was all over him and some stomach contents as well , Daniel and I quickly clamped it up and re dressed him , he found it funny and kept laughing , I think it was all too much for him because shortly after it he fell asleep in his carbed for about three hours , so we didnt really have a good day yesterday , we kept spilling the feed and also creating a bug mess , we needed to change Sammy-Joe three times , he kept saying also that he had a huge headache and ear ache , I will have to monitor how he goes today as I might have to call the local doctor to see him again ,, its definately a fulltime job looking after my boy ,, something is always happening .
Christian has been going off happily to school these days ,I am hoping that our days will become a bit more in our"' Normal "" what ever that means ,, ?????

Anyway I will try and add some photos , the new things in our life are we have set up a online storeSammy-Joes Fundraising store online
Donate to Sammy-Joes Cause
and also Sammy-Joe is featured as the New Child in Hugs and Hope organisation

Hugs and Hope

please check out all three and let me know what you think , I value your opinions and We love hearing from you ,,please write to us soon and let me know how things are in your end of the Globe ,, love and hugs
Maria , Joe , Sammy-Joe and Christian xxxxxxxxxxxxxxxxxxxxxxxxx

Wednesday 5th of July

Sammy-Joe is the most amazing child in the world !! He is incredible with his sheer love for life and people , yesterday he spent the day decorating the xmas trees with his carer Jo and Daniel , he cut and pasted and then he read some books , he also pretend shopped and just played with Daniel , he didnt want to sleep at all , he was full of energy and life , but the most incredible part of him is that he kept talking about his foodpeg and how we needed to feed ""Polly"", then he said ""YOUR FUNNY MUM POLLY IS SAMMY-JOES TUMMY" and he just giggled at me as if to say , how silly you are mum , I know whats going on .
Later in the day my mum came over to cook a nice meal for us , she made Roast Potatoe and pumpkin and roast chicken , Sammy-Joe ate about a cup and a half of the potatoe and pumpkin all mashed , the first time food went to his mouth in weeks , he really tried hard and wanted to prove to us he could still do it , I was very proud of him although I was scared also cOS I was worried about him aspirating , but he did quite well , but couldnt manage any more than that .
We cheered him on and showed him how proud we all are of , he is trying so hard to get better , during the night he woke up with an upset stomach , I think it was due to the pumpkin and potatoes because he hasnt had any food apart from the Nutrisan formula go to his stomach in ages, I gave him something for it and he fell back to sleep ,he has been sleeping alot during the night also , which is something very unsual for him . but I guess its gonna take a while for things to be back to being ""OUR NORMAL "" again . thank you to everyone that is praying hard and for everyone that writes to us , checks in on Sammy-Joe and to everyone that has offered support to us throughout this ordeal , I am very grateful to you all and appreciate your friendship and kindness , without you all I dont think we wouldve got through these last few weeks .
You are all amazing people we love you !!!
Maria and Joe , Sammy-Joe and Christian
keep spreading the word about Sammy-Joe and please keep raising awareness about this condition , you never know we may be helping other families by doing this and hopefully now early diagnoses is an option for these children .

Sunday 2nd of July 2006 4.31 pm

Its Sunday and its dark cloudy and raining , the weather feels like I feel I guess , its very cold also being winter I guess we cannot expect anything else .
Sammy-Joe has been very tired today , he has been sleeping for the last three hours , yesterday he seemed to have more energy , life has changed so much for him , not having any oral feeds is terrible because he can still smell the food and remembers the taste of things , he has asked me for pancakes several times , but then we we give him the vitamised version he refuses to even taste it , Polly Food Peg has been providing all of the nutrients and the total of his daily intake , he has been quite co operative about it all and understands that he feels better once he receives his feed this way , he has lost a significant amount of his speech and this too has been equally frustrating for him , although Christian seems to still understand Sammy-Joes speech and he helps us whenever we dont seem to understand what he is saying .
The speech therapist has put in an application for a speaking device to help Sammy-Joe with his communication ,we are also looking into the wheelchair for him because as he regresses he will need a tilted chair to help keep him at a certain angle so that he doesnt aspirate on his own saliva , its very sad that Sammy-Joe has lost alot of what he had ,such as being able to eat , and his clear speech , its very sad to think that Sammy-Joe will degenerate and lose other abilities , I am extremely sad about all of this , I know that God did give us many miracles through Sammy-Joe and all the things the doctors said he wouldnt do , he proved them wrong , he did walk , he did talk , he did sing dance and he even travelled across the globe with me on 18 flights , what an amazing achievement!! We are also very blessed to have Christian in our life because he has shown us the two brothers can love each other with all of their hearts , Christian too suffers when he sees what his brother goes through , he too has been through an emotional rollercoaster ride , a lot for a young child to go through.
Maria

ps I wanted to share this beautiful poem I read today

it has so much meaning
Candle Of Hope
by Linda M Hill




Saturday, December 17, 2005


--------------------------------------------------------------------------------





Everyone should be warm
Not suffering from the cold
Can you offer them a blanket
A candle they can hold
No one should be hungry
Can you spare a fresh hot meal
Even thou they may be homeless
They can see, hear and feel

_______________________________

Christmas carols in the air
But so many feel only pain
No home to call their own
Children crying in the rain
We pass on by the sick
Hoping not to see their tears
Their pleas whispered by the wind
Seem to fall on deaf ears

________________________________

Can't we care a little more
Reach out a helping hand
They're not asking for the moon
Just someone to understand
What we just take for granted
Could make another person's day
Give a little of yourself
Is what I'm trying to say....

(C) Linda Hill 2005




Tuesday, June 27, 2006 11.30 AM CDT


Hi Everyone,

How are you? I hope this finds you well and happy. Its Brooke here, on behalf of Maria. Maria and Sammy Joe are now home however are feeling sad. I am writing this journal entry as Maria and Sammy Joe are busy with the medical profession today. Christian is not doing well either, he is not copeing, he isn't sleeping and is understandably upset watching the deterioration in his brother, SJ. Christian adores Sammy Joe and they love spending time together. They will sit and read together, Christian loves reading Sammy Joe books. They are very fond of each other, two very special people.

Maria and Sammy Joe saw a doctor yesterday and after the appointment Sammy Joe wanted to get their christmas tree and decorate it. Yesterday afternoon Sammy Joe spent the afternoon decorating a christmas tree although it exhausted him. The doctor spoke to Maria about Palliative Care and Maria has made it clear that when the time comes she wants to have the Palliative Care at the home with her and his family. Sammy Joe is unable to fly on an airoplane for at least 1 year. It is so frustrating for Sammy Joe, he understands everything that people around him are saying however due to his loss of speech he is unable to express his needs and wants.

Despite all, Polly Food Peg is doing well. Sammy Joe is being co-operative with his meds through "Polly". He seems to be playing for roughly 20 minutes but then he seems exhausted and will go to bed to play with his leap frog, read a book or watch a DVD. In true Sammy Joe style, he appears to be bright and cheerful.

Today, the physio is comming to discuss the idea of Sammy Joe haveing a titled wheelchar and the house modifications that are required. The Royal Childrens Hospital have been fantastic, its only a hand full of people that needs working on to make them aware of how serious Sammy Joes condition is.

Whilst I was on the phone this morning, Sammy Joe has woken up and he is carrying a photo from the wall in a frame of Christian and Sammy Joe. He has been sleeping with it and takeing it everywhere with him, this just shows his unwavering love for his brother.

Thankyou for all the phone calls, emails, love, care, support, guestbook entries and prayers for "our Sammy Joe". Please keep them comming so Sammy Joe and the Liistro family know exactly how special they.


Take Care,

Love Brooke, Sammy Joe, Maria and the Liistro Family xxx

Latest on Sammy-Joe
Sammy-Joe has had surgery for a food peg as he has lost his ability to chew and swallow and has lost a significant amount of speech
We understand and know that his condition is progressive and at the moment we are dealing with our grief.

Sammy-Joes trip to America has been postponed due to his recent condition and recent stay at the hospital.
Sammy-Joe is now 17 and we have raised money to go back to the USA.

He was going well up until now, but has now hit a stage of regression. He is losing his ability to speak which has been extremely hard for him adjusting to his new way of life with his food peg, which we
have named "POLLY ". All the new medications he is on and just the new way of living is a also a big adjustment. He is also using his wheelchair more often, and I suspect that there will be more changes to Sammy-Joes life as he gets older, reminding everyone that this is a neurodegenerative disease and as time gets on Sammy-Joe may or may not lose some other abilities.

Because his condition is so rare it is still unknown as to what to expect, but what we do know is that it is a life threatening illness and DNA cannot repair itself. Cells die off and mutate due to the UV exposure, no matter how minimal it is.

So what ever happens it is irreversible and it is highly likely that it will progress, and will be a progressive deterioration.

This has been quite difficult for us to accept and is very painful to watch our beautiful boy slowly deteriorate.

I know that God did gives us lots of Miracles for Sammy-Joe , he walked when the doctors said he would nt , he grew lots of hair , he learnt to talk when the doctors said he wouldnt , he rode a three wheeler bike , he sang songs , he talked so much we kept telling him to be quiet in the middle of the night when we were all trying to sleep , he put on weight , he grew into almost a man , he laughed , played practical jokes and like most teenagers gave his parents grief . we travelled to the USA when we thought we couldnt , we are grateful to all the miracles that God has given to us through Sammy-Joe . life right now seems topsy turvery and seems like things are just awful , but I know deep down inside that Sammy-Joe is a fighter and regardless of all the things that are happening to him , he is still fighting to be heard , thank you to every single person that has left messages , all of your kind words mean so much to us , we know that Sammy-Joe is loved and that is all that matters to us .
Thank you
Maria and Joe Liistro

Saturday 1st July 2006

Hi,

Its Brooke here with the update of Sammy Joe isn't doing well. He has been sick and has had the GP at the home. Maria is just watching Sammy Joe over the weekend and if he is no better Sammy Joe will return to the hospital.

I promise to keep you posted,

Brooke xxx

Saturday the 24th of June Photos As Promised in last Journal Entry

Sammy-Joe hated the nasal Gastric Tube , he pulled it out half an hour later .


My Beautiful Brooke , amazing ,inspirational , loving , caring friend , she is like a daughter to me, we love her very much , Sammy-Joe calls her' Princess Brooke '


The Clown Doctors , they are amazing , cheering up all the kids in the wards , a fantastic Organisation , I am sure Patch Adams would be very impressed with them , they are amazing . Sammy-Joe loves em !!




more singing and cheering up



more presents from Julie , Collin , Regan and jason . thank you beautiful family Sammy-Joe loved them .


The FOODPEG ""Polly peg ""is all too much for Sammy-Joe to handle .







We got nominated for Pride of Australia Courage Award ,we are in the running for the medal , Sammy-Joe deserves twenty medals what he has been through ,I am dedicating this nomination to him .

Friday, June 23, 2006

Our first day home , we actually got discharged last night very late in the evening , Sammy-Joes tempreture stayed down long enough for us to go home , what a long stay in hospital , we were glad to be home , Sammy-Joe cried for about an hour because he thought he wasnt going to have the foodpeg in when we got home , he kept saying ""Sammy-Joe different , Sammy-Joe sick now , dont want Polly peg ""we named the Peg Polly , he chose the name it was between David and Polly and he chose Polly , I explained to him that it was going to be hard for him to get used it , but it was the only way his tummy would feel full and that polly was helping him to grow . he seemed to adjust a little while later , its so hard on him .
I was so overwhelmed about it all also , I found it overwhelming all my own trying to remember everything , but now its second nature , I am very careful to make sure I continue to flush it , keep it clean , and we change the bandage every four hours .
Life is a lot different now and also dealing with our saddness without making it obvious to Sammy-Joe has been difficult , the doctors believe that this is all part of his illness TTD and they suspect that he is in a progressive stage , his condition is neurodegenerate and what ever happens to him cannot be repaired , which basically I knew all of this before , but because Sammy-Joe was doing so well , I didnt expect all this to be happening now .We have had to postpone our trip to the USA and today all of the formula for the peg arrived , ten boxes , I am not sure how we couldve travelled with all of this formula , and even if the airlines would let us , it is a huge amount of boxes just for a month , clearly its going to be difficult , I may be able to purchase some overseas I guess , but the travelling bit frightens me right now .Everything right now is very overwhelming , also knowing that something else could happen so rapidly with Sammy-Joe is also scary to us .
We had a meeting at the hospital on Thursday so that everyone involved with Sammy-Joe understands what we /he may be dealing with soon and all the help and support is needed for us while this is happening , I was happy with the outcome of the meeting , I was also very happy to hear from Debby and Doctor Kraemer from the NIH , they called me from the USA and helped me to understand a little more about what could be happening to Sammy-Joe , I also received lots of love and support from Julie , and LIS thank you so much to everyone that has helped me through this , all my friends , family and loved ones , its true what they say , you truelly know how much youmean to everyone whenever there is a crisis , Sammy-Joe is very loved by everyone , he loves and hugs everyone he sees ,he was blowing kisses to everyone , I am going to miss all the nurses and PSA s from 5 east and 5 west , their support was truelly incredible , I feel like I have a family at the hospital .My beautiful friends Brooke , Heidi , Simone and her family ,Christine cousin Carol ,Gay Frank my friend Thomas , my mum and dad , my inlaws my aunty Nancy , cousin Daniel F and Daniel John , Michael and kim , my cousin carmen and Darren ,my sister inlaw Connie and my brother Claude , my brother inlaw Frank and the kids , my brother inlaw Albert and sister inlaw ROse , my friend Pina and Joe ,my friend Linda and Vince Cousin Sam and Gettina every single person that showed their love to us ,my cousin Antoinette and George for racing Sammy-Joe in the corridors of the hospital with his wheelchair trying to make him laugh my cousin Lisa and Sebastian I feel very blessed ,, my friend Robyne , Uncle Tony and Aunty Rita for truelly understanding how difficult this has been for Joe and I and for Christian ,Michael my Aunty Sandra and Uncle Nick , ALL THE AUNTIES AND UNCLES that called me and came to visit ,all the cousins that came and called and helped in many ways with their words of encouragement and phonecalls every single thought , prayer and hug helped me to get through this , I need to stay strong so that I can be here for Sammy-Joe , my husband Joe and Christian for putting up with me throughout all of this and my beautiful mum and Dad , for all the care she provided to Christian and Joe while I was away .And all of the organisations involved with us , all of your support , care understanding helped us to get through everything , I feel very grateful to have you all in our lives , I know we could not have gotten through this with out you all .My inlaws and my parents came every second day , just to play with Sammy-Joe to try and cheer him up , to keep me sane , Family and friends are so important to have when you are in a situation that you have no clue whats going to happen next .Also all the proffessionals , staff and medical team that tried their upmost to help , I am grateful to every single person that called , sent cards and emailed me , everyone from overseas that have left messages in our guestbook and to every single person that has prayed for us , please if I havent mentioned you , please forgive me , but as I write in my journal I am pretty sure yourname will be mentioned as I continue to describe what has happened in the last few weeks , there are so many things that have happened and spending time in a hospital can be very very draining to the system especially if you are the person that is sitting there watching and waiting helplessly for some answers .
I am very grateful to everyone .
We are going to take everyday as it comes and hopefully Sammy-Joe will get strong again and get through this , he has the spirit of twenty men and the smile to melt your heart , he blows kisses at everyone and gives the best hugs ever . he doesnt know his own strength sometimes , but that doesnt matter ,we know he doesnt mean to hurt , he just squeezes us very very tightly .

When I get a bit more organised I will add the photos that I took of Sammy-Joe at the hospital .
Maria

Sunday 18th of June 2006 12.41 pm

Sammy-Joe has had a fever since the surgery , but otherwise is doing pretty well with the food peg , he keeps wanting to touch it and explore it , he has had a tummy ache also but is still soldiering on , if all goes well and according to plan we may be home on Friday , thank you Brooke for all the updates , there are so many people I need to be thankful to and I am so Grateful for all the love , care and support we have received throughout our stay in hospital , all the staff , nursing staff , PSA s , medical team we have developed a pretty close bond and we love them so much , although we are lokking forward to going home its going to be sad to leave all our new found friends , Just want to shower them with love and chocolates , all their support has been fantastic !!, Also everything that Brooke has done , all the prayers from our overseas friends and cards , phone calls , thank you so much , it really helped us to get through this tough time , my family , Joes family and all of our friends ,also everyone from Sammy-Joes school and care team , thank you thank you for everything you have done for all of us , not just for Sammy-Joe , but also what you have done for Joe and Christian , its times like this you truelly know who are your friends , and I value each and everyone of you .
I know now its just really begun , with the food peg , and its a whole new ball game , I am just down in the resource room , the family resource centre using the computers here at the hospital , Sammy-Joe is asleep right now , so I thought I would write in our journal , Brooke is amazing and such a soldier still thinking about us while she is recoverying from her Operation , what an amazing person , I truelly love and admire her so much ,please please say special prayers for our "Princess Brooke ".
I am hoping that Sammy-Joe will be off his IV tomorrow as they are upping the feeds slowly to 110 mls per hour , and then tomorrow I will go down to the equipment centre here and pick up all the things we need to start using and I will learn to use his pump , all a new experience for me , but I KNOW once I master it it will be second nature to us . I am still alittle concerned about his ulcers and erosion and reflux , I will find out a bit more tomorrow .
Anyway ,please do say a big hello to everyone from Sammy-Joe , he keeps saying :"LOVE EVERYONE <thank God he has the spirit of twenty men.
love and hugs
Mariaxxxx

Friday, June 17, 2006 10:19 PM CDT

Hi everyone,

How are you? I am so very sorry its taken me so long to update Sammy Joes page. Its been a little hard this week with both Sammy Joe and I having surgery. Anyways, its Brooke here on behalf of Maria and Sammy Joe. Hopefully this journal entry will find them having a restful night in at the Royal Children's Hospital after another day of surgery and searching for answers.

Sammy Joe had surgery today and Maria has SMSed me:

" Sammy Joes surgery went well today. He has an ulce and some erosian in his stomach and some reflux. The doctor as biopsied it and Sammy Joe is on sedation medications for his pain control. He is also on a IV for rehydration. Sammy Joe has a temp of 39 so he is being observed closely. He is still asleep. He went in at 8am this morning and was back in his room at 10 o'clock this morning."

Sorry this is a short journal entry but please be reassured that Maria and the Liistro family check the journal regularly so please leave them a note to remind them that they are a very special family and the Sammy Joe is an unsung hero.

Good night from us all,

Brooke, Sammy Joe, Maria and the Liistro Family xxx

Tuesday June 13th 2006

I managed to get down here today to the resource family center in the Royal Childrens Hospital , Sammy-Joe is asleep in his room and I thought I better try and catch up a bit on my emails and journal , Brooke is doing a fantastic Job and I am so concerned about her as she isnt very well , she needs to have surgery tomorrow so please please pray for her , she is an inspiration and a blessing for me and without her I dont know what I would do , I love and adore her and Sammy-Joe loves her , he calls her his Princess , my mother also is an inspiring woman , never complaining , always helping out , doing the washing , cleaning and managing the house while I am away , Joe and I have been very fortunate to get the help from my parents with Christian , Christian has also been suffering , his anxieties have flared up and he isnt feeling very well , the impact of illness on a family is incredible , it affects us all in many ways , just having a child that is sick is already a huge impact on the family , the long hospital stays , the financial stresses , the seperation , everyone being in different places at once , its enormous , we need the deeepest strongest inner strength to get through this and the hardest time is yet to come , this stroke has affected Sammy-Joe in many ways , not just losing an ability that he loved so much with such passion , his eating and swallowing skill , but it has also taken away some of his independence , his choices in food , his passion for eating out at night , its affected alot of his social being , I am very sad today that my son is going through so much , he is very very frustrated and just wants his mouth to do what it used to , his speech is very affected also , he slurrs alot and sometimes has trouble getting the words out at all .
Surgery on Friday is going to be a difficult time for him , he may have to be sedated for two days , to allow him to get some peace and hopefully when he awakens the pain wont be as bad , and then it will be the beginning of a new way of life for him , the most difficult thing for him to understand is why his mouth wont do what it could before , he has been throwing up a lot also and is feeling miserable .
God bless you all and thank you for all the kind messages , thoughts , emails and cards you have been sending to us , we appreciate them all
Maria

Monday, June 12, 2006 9:09 AM CDT


Hi everyone, I have the latest update on Sammy Joe from Maria via an email. This is what she wrote,

" Monday night...

Sammy-Joe isn't too well again , he has been very frustrated and seems to have a least a throw up every night. He has been having lots of tummy aches and tells me he is sick all the time , he says his tummy hurts alot .
He is trying very hard to make his mouth do what it used to do, he slurrs a lot with his speech and is vry frustrated when I dont understand him . Not sure whether he will be able to understand that he may never be like he was and this has been very frustrating for him.

I really love all the nurses and staff , they have tried everything to make our stay as comfortable as possible. All the PSA's are wonderful and I would love to take them all home with me. I want to keep in touch with all the nurses and psa's they are just incredible , so loving , so caring ,so attentive , so over worked and I bet they are very underpaid also. I will continue to pray for them all and keep them close to me in my heart. I hope that Sammy-Joe has made an impact on them as they have made one on us , we will never forget them. I hope they have enough patience to put up with us for another two to three weeks , cos I Suspect we will be here for that long.

This week will be the hardest week for Sammy-Joe , especially on friday when he has his surgery. Today my friend Daniel Frezza and his mum came to visit Sammy-Joe. Daniel is an inspiration , he is a fighter and I keep telling him that Sammy-Joe and him have the spirit of twenty men , because they keep fighting all of this that their illness keeps giving them and they can still smile, both of them.

I love you with all my heart and soul
love you , love you you know My Aunty Nancy bought Sammy-Joe some new pyjamas and he is wearing them they are bright yellow with green turtles on them. He also has elephant ones and hippo ones , he loves them and my friend Heidi bought him some Bomber slippers. He loves them too and sleeps with them everynight , he loves them , he is such a character .
Maria"

So, please remember to keep Sammy Joe in your heart and the Liistro family in your prayers as they continue to search for questions to be answered and for Sammy Joe to have a speedy recovery.

All our smiles, Brooke, Maria, Sammy Joe and the Liistro Family xxx

Saturday, June 10, 2006 8:04 PM CDT

Hi everyone, I am sorry its taken me a while to get back to Sammy Joes page. Please be assured that I am in contact with Maria everyday however due to my own conditions I haven't been up to putting anything in the journal. Sammy Joe and Maria are still in hospital and looks like they will be in for a while so I will update this journal as often as I can. Maria sent me an email the other night with Sammy Joes progress and this is what it said

"I thought I better email you because I suspect I may not get to speak to you tomorrow as it is Saturday and I bet I will have lots of visitors. Anyways , Sammy-Joe had a hard couple of days , he refused to eat and hardly drank anything. This afternoon he ate a little better , having about three quarters of the small serve of vitamised food and some banana custard. He also had a big sleep in the afternoon after he had a bit of an episode occur in the starlight room , where he tried to hug everyone too tightly and also try and steal someone's sandwich. He is sooo hungry and really isnt coping with the concept of not being able to eat like he used to , not because he isn't hungry but because of the muscles in his mouth and throat not being able to function the same way. In the last couple of days we have had lots of doctors seeing Sammy-Joe and also the pschyology team come round to help sort out some behaviour medication , we have also had lots of cousins and friends come to visit. Christian also came to the hospital again to see his brother , so that has also been good for Sammy-Joes spirit . AT this stage Surgery is still scheduled for NEXT Friday the 16th of June. Everyone in the Hospital has been fantastic , all the PSA S and Nurses and some Doctors have been fantastic ,Sammy-Joe has won many hearts , even with all of his frustrations he is making many friends and is still a big social butterfly. Today I WAS a little frustrated and asked if I could somehow ask to speak to someone in admin to see why we must go through so much red tape and why someone like Sammy-Joe must wait so long for something which I feel should be classed as an emergency situation. I know it isn't the doctors or medical teams fault , its really the protocols of the hospital , so maybe its time I RAISE A LITTLE AWARENESS to them on how serious this illness really is and that it cannot be taken lightly. Sammy-Joe has been so hungry and so frustrated for so long ,he has sometimes lashed out at all of us , imagine how frustrating it is , he used to eat as much as Joe and Christian put together and now he is hardly eating at all. Still he keeps persisting "I NOT GO HOME I STAY HERE DOCTORS FIX ME""he knows himself and the fact that he doesn't want to go home means he isn't feeling right and he knows something needs to be done , he is one smart cookie!"

Promise I will be back soon,

This is sent with love from Maria, Sammy Joe, the Liistro family and Brooke xxx

Saturday, June 10, 2006 8:04 PM CDT

Hi everyone, I am sorry its taken me a while to get back to Sammy Joes page. Please be assured that I am in contact with Maria everyday however due to my own conditions I haven't been up to putting anything in the journal. Sammy Joe and Maria are still in hospital and looks like they will be in for a while so I will update this journal as often as I can. Maria sent me an email the other night with Sammy Joes progress and this is what it said

"I thought I better email you because I suspect I may not get to speak to you tomorrow as it is Saturday and I bet I will have lots of visitors. Anyways , Sammy-Joe had a hard couple of days , he refused to eat and hardly drank anything. This afternoon he ate a little better , having about three quarters of the small serve of vitamised food and some banana custard. He also had a big sleep in the afternoon after he had a bit of an episode occur in the starlight room , where he tried to hug everyone too tightly and also try and steal someone's sandwich. He is sooo hungry and really isnt coping with the concept of not being able to eat like he used to , not because he isn't hungry but because of the muscles in his mouth and throat not being able to function the same way. In the last couple of days we have had lots of doctors seeing Sammy-Joe and also the pschyology team come round to help sort out some behaviour medication , we have also had lots of cousins and friends come to visit. Christian also came to the hospital again to see his brother , so that has also been good for Sammy-Joes spirit . AT this stage Surgery is still scheduled for NEXT Friday the 16th of June. Everyone in the Hospital has been fantastic , all the PSA S and Nurses and some Doctors have been fantastic ,Sammy-Joe has won many hearts , even with all of his frustrations he is making many friends and is still a big social butterfly. Today I WAS a little frustrated and asked if I could somehow ask to speak to someone in admin to see why we must go through so much red tape and why someone like Sammy-Joe must wait so long for something which I feel should be classed as an emergency situation. I know it isn't the doctors or medical teams fault , its really the protocols of the hospital , so maybe its time I RAISE A LITTLE AWARENESS to them on how serious this illness really is and that it cannot be taken lightly. Sammy-Joe has been so hungry and so frustrated for so long ,he has sometimes lashed out at all of us , imagine how frustrating it is , he used to eat as much as Joe and Christian put together and now he is hardly eating at all. Still he keeps persisting "I NOT GO HOME I STAY HERE DOCTORS FIX ME""he knows himself and the fact that he doesn't want to go home means he isn't feeling right and he knows something needs to be done , he is one smart cookie!"

Promise I will be back soon,

This is sent with love from Maria, Sammy Joe, the Liistro family and Brooke xxx

Tuesday, June 6, 2006 10:14 PM CDT

Hey gang,

It's Brooke here reporting on behalf of Sammy Joe and Maria. Sammy Joe has had a rough couple of nights. Yesterday Sammy Joe saw Captain Starlight last night and they danced together on the stage. Sammy Joe always remembers his starlight wish that I was fortunate enough to grant him, which was inter state and he relates the starlight express room to me. Around 5 pm last night he started vomitting and didn't stop till about 1am, over night. Due to his vomitting he had an IV put in and was injected with maxolon and panadol. 'Maxolon' is an anti nousia drug so once this was injected into Sammy Joe he stopped the vomitting. Sammy Joe feels very tired and frustrated about not being able to eat so he is lashing out at Maria. Sammy Joe doesn't mean to hurt her, he doesn't realise how strong he is and how strong he can be.

Maria only got two hours sleep over night and the staff at the Royal Children's Hospital are concerned about Marias wellbeing. They have got a nurse specifically for Sammy Joe so Maria can get some breathing space within the Royal Children's Hospital. This afternoon the nurse on duty with Sammy Joe was Kayle, but on behalf of the Liistro family I wish to thank all of them for their caring and friendly attitude towards Sammy Joe and his needs. Sammy Joe slept today away as he had such a rough night with vomitting and has been excited with all of his visitors tonight - His Dad Joe, Grandma Nonna, Simone, Larrissa, Pena and Joe and even I made a surprising visit. When Sammy Joe saw me he was very eager to give me a hug and called me "Princess" wich I think is appropriate since I call him 'Prince'.

Sammy Joe is not eating or drinking, he hasn't all day as doctors are worried he will be dehydrated. Please keep Sammy Joe in your thoughts, hearts and prayers during this time.

Good night from all of us,

Brooke, Sammy Joe, Maria and the Liistro Family

Friday, June 2, 2006 10:28 PM CDT

Hi everyone,

How are you? I hope this finds you well and happy. Sadly, Sammy Joe and Maria are still in the Royal Children's Hospital so I am back again to give an update on how Sammy Joe is doing. I spoke to Maria tonight and she said that it looks like they will be staying at the hospital for a while because the surgeons are trying to bring the surgery Sammy Joe requires forward.

Sammy Joe was calm and quiet today, actually the opposite of how I saw him yesterday. Its so frustrating at the moment for Sammy Joe that when he is having a bad day it is a BAD day, luckily today it was a good day as far as his mood was concerns although he is still frustrated he appeared alot calmer today.

Psychologist came in to review Sammy Joe today and gave Maria ideas on how to handle Sammy Joe in times of anger and frustration. Due to his conditions he can be quiet strong, often not realising his strength and can be strong for people to cope with. Fortunately, Maria can cope however the Psychologist were able to offer her a few suggestions she hadn't thought of. The Psychologist were understanding and commented on what a social butterfly Sammy Joe is amongst all the staff.

The doctors have been good, empathising and listening to Marias issues and concerns that she voiced. Its never positive watching a loved one being ill, as you all understand the feeling of "Helplessness" but this admission has been more cooperative within the hospital. Everyone is working as a team and consulting Maria at every step of the way. The doctors also are under the belief that Sammy Joe's current health is all part of Sammy Joes condition and they must remained focused on treating the symptoms as they arise whilst not forgetting that they are dealing with a boy as he's aware of his body and what hurts.

The Starlight machine has been keeping Sammy Joe busy and he loves watching Hi- Five, Babe, The Wiggles, Baby Day Out in which he laughs alot. He is also blowing alot of kisses to all the PSA's and nurses and of course to me when I ring.

Christian, Joe and Nonna came and stayed a while last night. The boys got to spend some time playing the starlight machine and they are all copeing as well as they can.

The visitors list keeps growing with Immediate family at the very top, extended friends and student doctors.

Maria yesterday had the Herald sun come to the hospital, where they took a photograph of Sammy Joe and her, they have written an article regarding her nomination for the courageous award in the Unsung Heros. That should be out in the paper next week.

Well, I must go and rest these tired eyes but take care until next time,

Brooke, Sammy Joe, Maria and the Liistro Family
xxx

Tuesday, May 30, 2006 7:37 PM CDT

Hi all, its Brooke here. Once again I am writing this journal entry on behalf of Sammy Joe and Maria as they are still in hospital. Last night when I was going to bed I received this SMS from Maria (Mum):

"Sammy Joe isn't having CT scan tomorrow. He is having a lumbar puncture and a nasal gastric tube put into help him to get food into him... lufe can sure be rough!"

I told Mum to hang in their and too look forward to my visit tomorrow which was today.

Then this morning whilst I was going to see my orthopeadic surgeon I received another SMS from Mum saying,

"Looks like we will be here at the hospital the whole week. If the nasal gastric tube doesn't work then he will have to do a food peg which is a small operation in his stomach with tube to be fed by".

This morning after I saw my specialist I went to the children's hospital and saw Sammy Joe and Mum. They were in Day Surgery waiting to go down to have the operation done. Mum gave me a big hug and Sammy Joe had a tear rolling down his cheek as he looked at me. I gave him a kiss on his forhead and told him I loved him. No words were spoken by Sammy Joe but I knew he knew who I was for he had his cheeky smile trying to show thru. I held his hand and sang him, "Twinkle Twinkle Little Star" whilst Mum signed all the consent forms.

This afternoon I rang Mum to see how Sammy Joe went and she reported that the nasal gastric tube was put in but by the time Sammy Joe got back up to the ward he was alert and ripped it out as it was something he was not use too. He also ripped out his IV. As a result of having surgery today he has a bit of a fever. Late last week I mentioned a drug Sammy Joe was being trialed on, the doctors were hoping to have seen some improvement by now and although he remains on it no improvement has been noticed.

The Plan is that for the next 24 hours the surgeon is going to read Sammy Joes history and have a good think about his case - he will talk about it over the next 24 hours.

I will be back tomorrow so until then take care,

Love Brooke, Sammy Joe, Maria and the Liistro Family
xxx

Monday, May 29, 2006 1:50 PM CDT

Hi everyone, It's Brooke here again. This is going to be a brief journal entry as I am at work however I have just spoken to Maria (Mum) and she has asked me to let you know that Sammy Joe had a rough day yesterday, he was very constipated and was sick. I personally feel there is a bug going around because I myself wasn't well yesterday.

So today, Sammy Joe had a sleep this morning. He was given an enema and para - choc to help with the constipation. He is not eating much however despite it all Sammy Joe is still cheeky, still a social butterfly and he is currently having a fine time with visitors and Daniel. Thanks Daniel for playing with Sammy Joe whilst Maria spoke to me on the phone.

Thats all I have for now but will be back later in the day...

Love, Brooke, Maria, Sammy Joe :) xxx

P.S. This afternoon whilst I was teaching I received an sms from Maria asking me to put in the following:

" Daniel has been great also playing and distracting Sammy Joe from the world of medicine. Although Sammy Joe is frustrated about the vitamised food he is still very happy when he gets visitors. Sammy Joe has lots of people praying for him and I know he will get thru all of this, he is a fighter just like you Brooke xxx

Saturday, May 27, 2006 5:25 PM CDT

How are you? Its Brooke here on behalf of Maria (Mum) and Sammy Joe. Sammy Joe is still in hospital and will be an inpatient to at least next Thursday so until then I will update the journal regularly to let everyone know on his progress. It has been diagnosed the Sammy Joe has had a mild stroke.

Sammy Joe is being trialed on a drug called Pyridostigmine mestinon. This drug is to help the receptors in the musscles receive the messages from the brain. This is the usual treatment for a condition called Myasthenia Gravis.

Due to the stroke effecting his throat and mouth, this drug is designed to repair the receptors in his nerves. If this works with no side effects the plan will be for him to stay on this all his life and he might be able to have different textured food which would alleviate any frustrations and anger that he has at the moment. This would also mean that their would not be a peg or gastric tube as the medications would have it under control.

On Tuesday Sammy Joe is going back under anaseathic for a Lumbar Puncture and a CT scan.

However, despite the above Sammy Joe is happy, he is in his room as I speak to Maria having a dance party, he is being the biggest social butterfly amongst the nursing staff and allied health (He goes as far as entertaining the cooks!) I also feel a little bit of Starlight magic occured when Christian came to the hospital on Thursday night to visit Sammy Joe. He wanted to personally deliver his very own get well soon message to Sammy Joe. Christian is a very compasionate adolescent, who is far more mature than many kids his age and has had to face many issues that children don't even think about. Maria meet Christian, Joe and her Mum, Nonna in Maccas. He then ventured up to the ward but before he left the hospital he came back and hugged both Maria and Sammy Joe, he told them both how much he loved them. Sammy Joe replied with, "I love you too!". Maria did the same with tears in her eyes as that was a huge step for Christian to make, to go into a hospital etc. Christian if your reading this, I am so happy to be writing in this journal what a huge achievement you have made. I know your the world to Sammy Joe and your Mum. I want you to know, that I love you too! It was a very brave and courageous thing you've done this week. Could I please just thank everyone for their constant love, care, support and friendship through this hard time. Christian, just keep on being you as you make us all proud. Joe, its never easy but hang in their mate and Nonna (Marias Mum) thanks always for your helping hand, especally at the moment with Maria and Sammy Joe in hospital... your never ending love, care, support and hospitality to Joe and Christian is a true blessing!

This time around the experience of being admitted into the RCH, 5 East has been a positive one. The nurses and cooks go out of their way to make sure Sammy Joe is comfortable and has everything he wants. I was frustrated its taken so long to find out what I have however at least we are starting to get some answers now and their is a plan of action. Marias still hopeing to get to the USA however she like all of us, are concerned about Sammy Joe as his health and safety are our no.1 concern.

Then this afternoon I received several sms for Maria asking me to add this to the journal:

" Watching over Sammy Joe has been like seeing the world as it should be. Seeing it through the eyes of a child. Its a world of colour, wonder, its turning a hospital room into a toy world and he is asking everyone to come in and enjoy the dance party. Sammy Joes toy dinosour Dorothy is holding a dance party. You know what else Sammy Joe and you have taught me Brooke. That a medical label is just that and it doesn't change the uniqueness of you and Sammy Joe. You both are outstanding and unique. Sammy Joes and your diagnoses doesn't diminish your uniqueness. The uniqueness in both of you and your inspiring qualities make you both exceptional in so many ways."

Well, thats all I have to report for now but I promise I will be back reporting as soon as I hear.

Take Care,

Love Brooke, Maria, Sammy Joe and the Liistro Family xxx

Wednesday, May 24, 2006 6:30 PM CDT

Hi, its Brooke here again and its been roughly 24 hours since I last wrote. In the last day Sammy Joe has lost his willingness to eat as it seems all too hard for him at the moment. Today Maria (Mum) made a milkshake with sustagen in it to assist Sammy Joe in getting stronger.

Today Sammy Joe had the Hip X Ray completed. The Radiologist at the Royal Children's Hospital were fantastic, they made the room all dark for Sammy Joe, they even gave him a toy Banana wich has a face on it to keep him calm. The toy Banana is still in Sammy Joes hands at the moment, they have nicknamed him the Banana thief due to his love of Bananas. Daniel also came to visit Sammy Joe today. Sammy Joe was so excited to see him that he even got out of bed and played with Daniel.From the bottom of everyone's heart, thank you Daniel for visiting Sammy Joe. Your constant friendship never goes unnoticed and I personally know you mean alot to Maria, Joe and the boys, Sammy Joe and Christian.

The nurses love Sammy Joe on the 5th Floor, where there is alot of talking between the nurses and Sammy Joe. Sammy Joe became very excited when he herd my voice on the phone. He is a huge social butterfly.

Tomorrow Sammy Joe has a big day with having an MRI, he is having a skin biopsy, lumbar puncture and blood tests all under anaesthetics.

Sammy Joes greatest achievement over the last 24 hours is that he has gone to the toilet and did number 2's. This is such an achievement as he had been constipated up until then. Yipee Sammy Joe! You rock ...

Sammy Joe recalls me as his Starlight Wish Fairy and is waiting patiently for me to feel well enough to take him down. Sorry Daniel - no offense!

Talk soon,

Brooke and Maria (Mum)xxx

P.S. Good evening, its Brooke here with the latest update before I go to sleep. Maria wrote to me saying that this experience has been more positive with the Royal Children's Hospital. Maria can see all the doctors and nurses are trying very hard to find out whats caused this for Sammy Joe. Maria said she knows that she will be here at least until Tuesday. Sammy Joe is missing Christian badly and Maria is missing him too.

Sleep tight

Brooke and Maria (Mum) xxx

Tuesday, May 23rd, 2006 11:06 AM CDT

Dear Friends,

How are you? I hope this finds you well and happy. Its Brooke here writing this journal entry for Sammy Joe and Maria as they are in hospital at the moment. Sammy Joe has been unwell for quiet a number of weeks and is regressing in his condition so last night Sammy Joe was admitted into the Royal Childrens Hospital. I rang Maria this morning whilst Sammy Joe was asleep however Maria said that it had been very noisy with major renovations going on around them. Sammy Joe was seen by the doctors this morning and the have advised Maria that they expect Sammy Joe to be in hospital for 5 days, for investigations to try and find an answer into why he is regressing. Sammy Joe will be seen by a nuerologist, a goastro interologist and the immunity people. He will have a series of test including X Rays, CAT scan and hopefully an MRI. He is in a nice single room with his own comforts from home, like his Wiggles bedding.

Joe and Christian are trying to cope at home with the assistance of Marias Mum, Nonna. I know from personal experience that it is hard to continue a career, a home, siblings etc whilst someone in your family is sick but the boys are doing as well as can be expected with loads of love, care and support from lots of people around them.

Marias Uncle Sandy had a heart attack last night and is in the Geelong hospital so could you please says some special prayers for Marias family as they cope with two special people in lives in hospital at the moment. Please send a special prayer to Sammy Joe, for this brave adolescent who has so much courage goes through so much more than what he deserves. Sammy Joe, when you read this remember your laugh is infectious, your spirit is free and you remind us daily how important life is.

I will be back with more news when I get it...

Until then, Take Care,

Brooke xxx

P.S. It is now 5:40pm and I have Maria (Mum) on the phone and she has asked me to let you all know Sammy Joes update from this morning. Since I last wrote Sammy Joe is still having trouble with his food and he is very frustrated as he is hungry but cannot eat. The only food he can eat must be vitamised and he can only have yoghurts and custards. He has been asking for cheese burgers and Spaghetti but is unable to chew or swallow these yummy foods.

Maria took him down to the Gift shop for some bribery, which never hurts a child. He got a Helium Balloom of a Dolphin and a nice stuff toy, Lion which he calls Simba. These were brought to encourage him to be optomistics and to know home isn't too far. So he surrounded by toys and watching tv in his hospital bed. He is watching Pokamon and is calm. He is definately a charmer, big social butterfly with all the nurses and doctors.

The speech pathologist Alicia came from Glenroy Specialist School to visit Sammy Joe. He was happy to see her and she came with book for him to read.

Sammy Joe is still waiting for MRI. The nuerologist has decided that he needs the MRI because its obvious that it is something neurological. The gastro interologist has also decided that once MRI is done we will need to consider a food peg. To Mum and I this doesn't sound positive, its sounding as if he is regressing in his condition so we need some magical prayers.

OK, to finish this on a positive note Joe rang Maria today to tell her that the Herald Sun had called. Due to the awards they are promoting, Maria has been nominated for the Australian Unsung Hero Courage Award. No award could really show Maria just what her tireless efforts mean to not only to Sammy Joe but to all who know and love her. However, maybe this would just show publically what I have always felt about this amazing lady... to never give up as her bravery and courage is the world to her son and to so many others.

Sweet dreams for now,

Brooke and Maria (Mum)

Wednesday 17th of May 2006

Sammy-Joe had his video Fluroscopy today at the RCH , the staff and nurses were wonderful and ensured that Sammy-Joe was happy and comfortable the whole time , well it was interesting to finally get closer to an answer to why he is having so many problems with his eating , its been determined by watching the video while he was eating , that it is much more comfortable for Sammy-Joe to eat pureed food and vitamised food , drinks with food thickener to make it slide down his throut easier . It shows on the video that his muscles in his mouth and throut have weakened and he has lost the ability to chew and to be able to push the food down , so he pushes his chin into his neck to help the food go down . it is a struggle for him , His Doctor will see him on Friday and then we go back to the hospital on Tuesday to see where we go from here , a neurologist or throut specialist ,, not sure , depends on what they decide , he definately needs an MRI done .
The Speech therapists were lovely and very helpful , Sammy-Joes speech therapist from the school came also and she explained to me about what was happening ,and the good news is by just seeing the video , it looked like no food was going down into his lungs which is the good news , but of course they will be reviewing the video again and again and give me some more details on Tuesday , but in the meantime , its vitamised food from now on and food thickener added to help the food slide down the throut easier .I feel for Sammy-Joe because this could be a result of a mild stroke to the right side of the brain , still doctors need to review and discuss this , but we wont know until an MRI is done , I feel for him also because he wants to eat the way he used to but his mouth and throut wont let him , its very frustrating and sad to watch him , he gets annoyed because he wants to bite into food but his mouth doesnt coordinate that way any more , its so unfair him there is a definate deteriotion and regression to his eating , he has now lost nine kilos , which I guess he could afford to lose , but not to lose it this way , I have been praying all week for Sammy-Joe , as I do everyday , I believe God heard me because today my Sammy-Joe was so well behaved it was incredible , after having a terrible week , he had a wonderful calm day today and he let all the health proffessionals do whatever they needed to do , he was a star , I am proud of him .
Maria



Sunday, May 14, 2006 10.50 pm

Happy Mothers day to all you beautiful mums , to all the mums that work hard every day at looking after their families , to all the wonderful mums that work so hard everyday making sure their kids are tucked safely in to bed . I hope your day was wonderful and restful and I hope that you all got a lot of tender loving care today .

I always look for the sacred in everyday , so often we move through our days in a fog and frenzy , until something startles us into a cosmic wake up call , a profound awareness of how much there is in our lives to be grateful for , how much we have and also how much we have survived through hard times .Today I have realised how much we all take for granted , the people that we love that surround us , may not be here tomorrow , so we need to enjoy every single moment of our time with them .As a parent it is a wounding we fear the most , it is the nightmare we pray we will never have to go through , but when you have a child with an illness , its a certaintity you know that is waiting around the corner for you .it is unthinkable and it is the unthinkable that happens to alot of mothers everyday , so today I dedicate a special prayer to those mothers , I am thinking of you and praying for you , I feel for you and feel your pain , please know I am here.
I look at my son Sammy-Joe and I watch him struggle to eat , and every day his struggle seems worse and I wonder why must these beautiful precious children suffer , why must they ? It doesnt make sense to me .I also know that alot of things dont make sense , but they are just the way they are , and we must learn to live with what we are given , today Sammy-Joe hugged me and told me that he loves me , Christian did the same , this was the best mothers day present anyone could ever receive , the gift of love .


I hope your mothersday was as sweet as mine , Godbless you all and please know I do read each of your messages , I am grateful for all the cards , letters and emails you send to us .Sammy-Joe loves me reading them and he oftens asks for me to read him more , he is a sweet heart .
Thank you
Maria

Friday the 12th of May 2006 2 oclock

I am definately loosing it lately , I am tired irritable and in need of a break , I have been so sad about Sammy-Joes situation with eating its frustrating to see him struggling , I cant wait for the wednesday hospital appointment to come round quickly .I am feeling frustrated that its taking so long to get an answer , I know that its not the doctors fault , its more the public health system and then Sammy-Joe being unwell and too unwell to have his MRI didnt help , that all delayed things for us , and now he is worse , I am so upset , I havent had a good week and am feeling depressed , I just want things to change for the better and stay that way , but unfortunately things dont , things keep getting to the stage where they feel worse . The doctor is right about me burning out , its getting to the stage where I am starting to feel burnt out , too tired to even think , I would like Sammy-Joe to be well enough to travel soon and also I need to be well enough also mentally and physically , I am crying out for help at times but feel like I am not being heard .
I am grateful to all my friends that stick by me and also to all the understanding that they give to me , I wish I had more time in a day to spend with everyone , but sometimes just spending the time with Sammy-Joe is what counts to me , its so sad to see him struggling and I am constantly trying to find ways to make the food exciting to him , he hates it all vitamised , he wants to be able to chew food again , its a frustrating situation right now and its finally taking its toll on him , he is starting to refuse to eat , its frustrating on me too , I am constantly worried about whats due to happen , and I am sorry to those people that seem to be on the receiving end of me when I am feeling frustrated , I am not crying or lashing out at you I am reacting to my current situation and my tiredness and stress is finally taking a toll on me .
Today I promised that I would try and think in a different way and try and find a more positive way of dealing with whats happening , I will wait for the fluroscopy and hope and pray that it all goes well for Sammy-Joe , as his behaviour is also a very big part of things not working out , if he is stressed out he will behave terribly for the test , so my main aim is to try and keep him happy and calm and not afraid of whats going to happen , I havent spoken to him about it yet as I am hoping that on the day we will be able to talk to him and explain to him with out him freaking out .
yesterday we had a hectic day in my house , my friend Christine collapsed in pain and I had to call the ambulance for her , it turns out after an MRI and Catscan that she has ruptured a bone in her shoulder . After seeing the ambulance at my house yesterday , it was a reminder of something very real to me , that one day I MAY need to call them for Sammy-Joe for his choking , and his problems with chewing , that is the seriousness of our situation , My friend Simone arrived at the same time as the ambulance and she panicked because she thought Sammy-Joe had choked , my neighbour thought the same , the situation with Sammy-Joes eating is so real and so evident that the thought of seeing the ambulance had everyone thinking all sorts of things , my friend Christine is safe and well at home now recoverying , she spent the night in hospital , but she also commented how it was strange that its taken Sammy-Joe so long to get things done , when it only took her one day to get an MRI and a Catscan ,, strange ,, t, well I guess that is the system .

Tuesday May the 9th 2006 12 midnight

Sammy-Joe and I spent all day together today , we read books , played puppets and even had an afternoon nap together , we sang songs , danced and played on the computer , we watched HI5 and clapped had a party just on our own , his carer for the day was unwell and so I had no carer to replace her , the shift was meant to be a four hour shift, this is usually the time when I go and pick up last minute things at the supermarket and then head off to pick up Christian , get tea ready and do all the things that us mothers do everyday , but today was an entirely different day , everything did not go according to plan , all that I had planned to do went out the window and I found myself just wanting to spend all day with Sammy-Joe , not touching any house work , laundry or cooking , not lifting a finger towards house hold chores , I just wanted to spend all day with him and caring for him , my mum came over in the afternoon and offered to cook tea , which was fantastic , I also had some friends pop round that I havent seen for a while , it was a very busy day , when Sammy-Joe had a sleep in the afternoon it was time to spend some time with Christian , and Joe and have a cuppa with my mum , I am finding that I just am hating housework lately , but I know that If I dont do it it will not get done , I have to take myself out of this mode and change the way I am seeing things lately , I feel that I am running out of time for some reason or another , I think this is why I just want to spend quality time with people that I love .I have been annoyed at myself also because I am starting to feel like I really shouldnt expect too much from myself as a person , I know that I am here to Care for my precious children and to Raise Awareness , I believe that my lifes purpose is to continue to do this even later in life , I found today extremely rewarding and was amazed at how much Sammy-Joe talked to me today , our conversations included talking about the flights to America , he talked about the doctors and he talked about seeing people that we first met when we arrived in the States , I am amazed at his memory , he is amazing .
thank you for all your kind messages in our guestbook , Sammy-Joe loves me reading them to him , I am grateful to all of you who consider us part of your lives and consider us as friends , I am so happy to know that I have you all reading this journal and being a big part of our lives ,I look forward to reading more from you all and getting to know you all more , thank you again for all your kindness .
Maria

Monday, May 8, 2006


Sammy-Joes speech therapist came round this evening to observe how he is doing with his eating , she said there is a significant change in the way he is positioning his food in his mouth and also the lack of chewing seems to be a problem and its obvious that he has lost some weight , we all agreed that because of Sammy-Joe s safety with food at the moment its best if I keep him home , this way I can continue to vitamize the food and give him food every hour in small amounts , he is always so hungry because he isnt getting enough nutrients at the moment , I am going to go to the pharmacy today to see if I can find a supplement to place in his food , this way he will feel satisfied and get all the vitamins that he recquires as well . He is due to have his fluroscopy on the 17th of May , and the Speech therapist said she will meet us at the hospital to also be a part of the test , this way she can explain to me what is actually happening to Sammy-Joe , there is an obvious regression in the way he is eating , we just have to determine where it is coming from .
I finally feel like we are getting to some answers , I am wondering if the MRI will be booked in earlier before our trip or still happen around August , not sure what the doctors have all decided .
Well I will keep updating once a week , Sammy-Joe has been a little calmer this week , he seems to be feeling a little better with his head cold , just an annoying cough , but otherwise he seems ok .The weight loss is pretty obvious now to most people that see him , they are always commenting , , it concerns me because if he is losing the weight because there is something wrong , well then its a negative , I know that at one stage Sammy-Joe appeared to be over weight and my concern was that he would suddenly go on a downward slide and start to lose weight ,like in the past , he was always so tiny for his age and had enormous trouble trying to gain weight , so I am concerned that he may continue to regress and eventually be like he was before we went to the USA , when he was 13 he was 23 kilos which is very very small , I know that once Sammy-Joe is ill , he keeps losing weight , and because I know him so well , I am worried that these are the little signs to regression .The extra sleeping , the lack of energy , the enormous amount of trouble chewing and swallowing food , the lack or desire to get out of bed , the constant screaming ofpain and the constant saying "I AM SICK "I think we should trust Sammy-Joe enough to understand that he knows his own body , and if it werent for him all of those years , he may not be here still , he was the one that kept telling us the "SUN HURTING ME" even before he had a diagnoses and even before he could string a full sentence together .
Maria

Friday the 5th of May 2006

We have had another difficult week , Sammy-Joes behaviour hasnt been the best , but I believe its because he isnt feeling too well and he is frustrated over his eating and control of his mouth , it concerns me , he struggles to chew simple foods and is even having trouble with bananna and yoghurt , I took him to see the Doctor last night , it didnt go as I had thought it would , Sammy-Joe kept screaming and wanted to be out of there , he wanted to come home , the doctor was great and tried everything to keep him calm ,he even made balloon animals for him , he is a great doctor , it was difficult thou , because Sammy-Joe refused to listen , he just wanted to be in the car and in the dark , Simone my friend came with me , as Joe had to stay home with Christian , Christian had too much homework and we thought it was best for him to try and catch up .Luckily my friend Simone came to see me and she offered to keep me company and give me some help with Sammy-Joe . She took Sammy-joe back into the car to calm him down and this way I could speak to the doctor , the doctor is trying to organise something urgently for Sammy-Joe , Sammy-joe was so distressed I ended up bursting into tears , the doctor took some blood tests because he feels I am burning myself out and need to be concerned , he said I look extremely tired and I need to make sure my vitamin d levels are all up and normal, I will get the results next week , I am tired and am probably burning myself out a little , I think I am trying to do too much , Sammy-Joe has never behaved so badly before so this also threw me off and I became agitated and deeply saddened by all that was happening , , he wouldnt stop , I havent seen this behaviour in him for a long time , but I have seen signs of regression in the last six months , so now it is very concerning to me that he is getting this bad again . I am frightened that once we are in the USA he will behave the same , but also am aware that he already knows Doctor Kraemer and the National Institute of Health staff members , so he maynot behave this way because it is familar to him , I am hoping all this can be sorted out before we leave , Sammy-Joe is definately going through something , but we have no clue what it is .Time for investigations because its becoming something that all of us are unable to work out .
thank you for checking on Sammy-Joe and for all of your prayers , The doctor has told me I need to stop appologising for things , I am constantly saying sorry , I am sorry , he said it is unacceptable and I need to stop ,,lol,, he is such a wonderful doctor , he was the doctor that helped me when I wasnt well last year in October , I am grateful to the Lions Club members that introduced me to him , he is a great doctor .
Maria

wow we are now in the month of May

Wow how time flies

,it is incredible we have less than 8 weeks left before we fly over to the USA , I cannot wait to get there , Sammy-Joe is also very keen to go which tells me he is looking for help .
It has been an extremely difficult three weeks for us and I am feeling the strain , I am exhausted and very achey , I am looking forward to the trip also , I know once I am there I will be checked for my health as well , they were so wonderful to me last time and made sure I was ok .I am sure they will check me out this time also .
The last few days have been strange, I have been seeing things more clearly now and looking at how incredibly real our situation is with Sammy-Joe , how precious , how hard and how challenging our lives are becoming ,

I have also been feeling that I must work harder at trying to change the way things are going , I need to turn things around and make them positive again , for all of us , I feel like its always up to me to do this , like I am the backbone of the family , the strongest one , the one that works out ways to survive , dont get me wrong , but Joe is wonderful and he is trying very hard to keep things together , but at times its all too much for him to cope with , so he always says its up to me to keep things together and fix things , he finds it difficult and is still grieving alot .

Christian also sees me as the strong one and relies on me to keep it together , he always says , ""YOU ARE STRONG MUM < YOU KNOW HOW TO FIX THINGS "but the truth is somethings or situations cannot be fixed , they just are what they are , and the sooner we all accept this the easier it will be to go through things when they happen .

Thank you all so much for being very patient with me with my lack of updating , I have been in a bit of a slump lately and havent been feeling up to writing , my writing has always been something very precious to me also , I write what I feel and lately my feelings have been clouded by judgements of others and so I have really been a bit withdrawn with what I am feeling , I have been judged , ridiculed and be-littled by some terrible people and what they are saying about me and so I am really trying to just to refrain from writing anything too personal and I am trying to limit what I write , but I understand that it is not fair to the people that truelly love and care for us , so I have decided I will have to deal with the ""Nasty folk "" in a different way . BY IGNORING their hurtful remarks and continuing to be myself , that is the best way to deal with everything ,, just be Me ., I am who I am and nothing that anyone says can change that , I have done so much for our situation and for my child , I am willing to do things all over again as long as I keep my precious family together and my beautiful boy Sammy-Joe alive and with us , I love him and am doing everything I can to continue to save his life
Sammy-Joe has had a few rough days and rough nights , but this morning he seemed to be a little calmer , the home front will be busy soon as we prepare for our trip ,, how exciting !!!we cannot wait !!


Prayer of the Day -- From the World's Great Spiritual Traditions

We Pray for Our Child
We pray for our child to lead a life rich in the teachings of the Bible. We pray that our child grows into adulthood.

"My Precious Child"

"For I know the plans I have for you," declares the LORD, "plans to prosper
you and not to harm you, plans to give you hope and a future"
Jeremiah 29:11

Are you like me and asked from time to time --- Lord, what is your will in
my life? Or Lord, how do I over come this frustration in my life? This
unknown writer addresses these and other complex issues of our relationship with
God, beautifully opined.

My Precious Child Be Still....
Sometimes I ask the question,
"My Lord, is this your will?"
It's then I hear you answer me,
"My Precious Child... be still."

Sometimes I feel frustrated,
Cause I think I know what's best.
It's then I hear you say to me,
"My Busy Child... just rest"

"I know the plans I have for you,
The wondrous things you'll see;
If you can just be patient, Child,
And put your trust in me.

I've plans to draw you closer.
I've plans to help you grow.
There's much I do you cannot see
And much you do not know.

But know this, Child ..... I LOVE YOU.
You are Precious unto Me.
Before I formed you in the womb,
I planned your destiny.

I've something very special
I hope for you to learn.
The gifts I wish to give to you
Are gifts you cannot earn.

They come without a price tag,
But not without a cost;
At Calvary, I gave Myself,
So You would not be lost.

Rest, Child, and do not weary
Of doing what is good.
I promise I'll come back for you
Just like I said I would.

Your name is written on my palm,
I never could forget;
Therefore, do not be discouraged when
My answer is... "Not Yet"

Prayer: Father thank you that you listen to my every prayer. In the name of
the Lord Jesus Christ. Amen!

Psalm 46: 1-3 & 11


God is our refuge and strength, A very present help in trouble;
Therefore we will not fear, though the earth should change;
And though the mountains slip into the heart of the sea,
Though its waters roar and foam,
Though the mountains quake at its welling pride.

The Lord of hosts is with us;
The God of Jacob is our stronghold.





Wednesday, April 26, 2006 6.01 pm

Well after a horrible week Sammy-Joe looks to be steadily improving , on Friday I took him to see his doctor and she agreed we need to investigate more on this swallowing and chewing issue that Sammy-Joe has been having .
He also has a terrible cold , has had a fever , but finally today he seems to be on the mend . The chewing and swallowing is still a big issue as he seems to choke on almost anything now , his food keeps dropping out of his mouth and its like he is losing the muscle tone in his mouth , the ability to keep the food in and also the chewing process .
On Friday we had a wonderful surprise from the people from Love Quilts .


Love Quilts

they sent off Sammy-joes quilt to him , he was so happy to see it and its now his favorite thing , he loves it , I am so grateful to all the people from Love Quilts , ITs so wonderful how generous and kind people are from all over the world , I am so happy to know that people are just so kind , the kindness of people from all over world , its truelly amazing ,






I am so thankful to all the kind people that arranged to make this happen for Sammy-Joe , here are some photos I took of him .

Tuesday, April 25, 2006 5,18 pm

Sorry for the lack of updates , I have been busy with Sammy-Joe not feeling well at all , all week .

Tuesday, April 18, 2006 11.19 pm

Sammy-Joe had another quiet day today , he is still having trouble chewing his food and with swallowing , I have been vitamising everything for him . I have learnt not to trust my intellect over my heart , I believe what my heart is telling me , to be careful for him right now be extra cautious , I have always followed my heart when it comes to my children and when it comes to Sammy-Joe , this is why he has come so far .
I have decided to see if I can somehow get an MRI done now that he is feeling better with his breathing .


I have not been feeling well myself , but am trying not to concentrate on me , I know that what you give to the world doesnt have to be something material , it has to start with Love , and I also know that loving yourself first has always been the way with humans in order to love others you must start with your self , but I have always given love to my children, family and friends without putting myself first , I know I need to go and see a doctor and trust that what I feel is also so intuitive to myself , trust my instincts , thats what I must do , just like Sammy-Joe has so many times before .
I trust my instincts always for others , but for myself I do let myself go alot , I know its something that I find hard , because I feel that my children are so important and need to come first , but I am also very tired and sad at the moment and I know I am in need of prayer .
Someone once told me that if you start bringing love into your life , consciously and delibrately filling your life with love , you begin to see miracles all around you , I believe Sammy-Joe is a Miracle. is this what that person meant ?

Your life becomes and expression of love , and you see things you never thought possible happening in both your inner world and outer world . The same person told me that if you begin to constantly give love , all else begins to come to you .
I recognise that both my mind and heart are intelligent enough for me to make the right choices in life .Loving people is what I love to do , being happy is something that I try to do everyday , at times it is difficult as my heart feels pain and sorrow , but my smile hides the pain , although the people that truelly know me and see me that I am sad , I am afraid to lose my precious boy , I am also afraid I am running out of time with him , that what I need to do is spend every waking moment bringing him happiness , bringing both my children happiness and Joy , because tomorrow we may not be all together , there could be one of us that has to leave us , I am so frightened of what TTD can bring to Sammy-Joe and what it is doing silently to his body , whether the doctors have researched it enough to truelly understand how painful it is and how threatening it is to his vital organs , whether this illness is truelly understood .

So in the meantime , I must live in the present moment and just take each day as it comes , and live in hope that things will not get worse for Sammy-Joe , but I am afraid I can see some signs, signs that are scarey , signs that something is not right .

Attention is the ability to listen with the totality of your whole being and this is what I am doing , I am paying attention to these signs , I am seeing things clearly as they are , I am so glad we will be going to the USA soon , I feel its the right time .
I love Sammy-Joe , I love him so much , one of the new carers said to me ""I have never in my life seen a mother love her child like you do , you deserve a big medal "" I replied ""NO I dont Sammy-Joe does , it is he that has taught me unconditional love .His Love is the ultimate experience because his love is pure and innocent , he just wants to live , love and be happy ,All forms of love are an expression of God , when I look at Sammy-Joe sometimes I feel like I see GOD in his eyes .
Love is more than a thought and a feeling , it is a behaviour , , it means spending time with our children as they struggle through life , it means be kind to each other , love one another and when you are sitting looking at each other ,pay attention with the totality of your being , whether it be your friend , family , brother , sister , daughter , son, uncle or aunty , it is important to behave in a way that you let that person know that , he or she will not be forgotten , that she or he is important to you because they are in your life , even when that person is no longer on this earth .It means being with a friend as we allow them the space and opportunity to share their lives, their dreams , and sometimes their tears ,I cannot begin to count how many friends have turned their backs on me because they found it too difficult to listen to me or watch what we have to go through , it has been a sad time for me losing people that I thought would be there forever ., but at the same time I have also found friendship in people that I never thought would be able to be my friend .Love means really trying to see things through the other persons eyes The effects of experiencing genuine compassion and love reach far beyond , just being there for a person , it means be with them , through the bad times , sad times and rejoice with them in their happy times .

;Life is too short , be happy with one another .

Maria

Monday, April 17, 2006 11.30 pm

Sammy-Joe had a good day today , the UV low on 0 to 2 outside , he played outside with the dog Roxy and the cat Tiger , his favorite pets , Daniel came over today to play with him and he was very impressed that Sammy-Joe wanted to stay outside , when we checked the UV monitor at 3 pm , it was on 2 , and because Sammy-Joe was covered like an Eskimo , it was probably low on 0 for him beneath his clothes , he felt comfortable and happy to be outside .
I was happy to see him playing with the ball and also running around the back yard for a change , it felt good to see him have fun , he probably stayed out there for about half an hour , and then ventured back inside until around 5 pm when he wanted to go outside again .I love winter because Sammy-Joe gets to go out in the afternoon , and he definately needs this time to get some fresh air in his lungs and get to explore and see the garden , look for ants and look for the bunny hopping around in our back yard .
its so easy for all of us to take these simple things for granted , the things that we can do which are so hard for Sammy-Joe .
Maria

Sunday, April 16, 2006 10.38 pm

Happy Easter everyone , our beautiful Christ has risen .
I hope everyone had a wonderful Easter .
Sammy-Joe was so good today , he was quiet calm and very happy to receive some Easter Eggs .
last night he was so good also , our friends Helen and Robert came to see us and Sammy-Joe was a little gem , completely different to Good Friday , he had a terrible day on friday , he was irritable , annoyed and was very destructive , he wanted to break everything in sight , I was so sad I started to cry , I was so upset seeing him behaving so badly was so sad for me .
I find it very difficult to watch helplessly , he is having so many difficulties lately , he cannot chew food and so we need to vitamise everything and the other thing is also the days when he is so irritable and he cannot express his feelings and he then tends to try and break everything , because he is unable to express how he is feeling , he becomes frustrated and will cry alot and scream alot , I call these our autism days , because it feels like I cannot do anything to get him out of it .

Today he had a wonderful day , he was calm , happy and very social , I believe God was with us all day today , Sammy-Joe said so many things to me today , it was so beautiful , he wanted to tell everyone how wonderful he felt .

I had a wonderful Easter , Christian had a great day also .
I will add some photos soon
Maria

Thursday, April 13, 2006 midnight

Sammy-Joe had a very quiet day today , he woke up a little sluggish today and complained about his tummy hurting , about a couple of hours into the day he decided he wanted to sit under our pergola for a good ten minutes , I was a little concerned as it wasnt the right time of day for him to be out and the UV was a little high , he covered himself up with lots of clothes and we put suncream on all exposed areas of his body ,which isnt really too much , just his hands and face and then he wandered out for ten minutes , he wanted to get some fresh air and also watch the cat and dog playing ,after a while he decided to come inside and then he fell asleep for about five hours from 1pm to 6 pm , Daniel didnt come as he too was unwell and is struggling with a tummy virus , so no carers for today and tomorrow .
I am hoping that all of these bugs will stop because I really dont think Sammy-Joe can take much more , he hasnt been to school for a whole four months now , he has probably attended one whole week this year and thats it , it really saddens me our situation and I am praying that he can at least get to go even one day a week , but I guess it isnt much use for him if he is so unwell .
I guess also the old saying is that the Happiest people dont have the best of everything , they just make the most of what they have and this is how I see Sammy-Joe , he tries every single day to make the most of what he has , he doesnt complain , he just gets on with his life .
thank you for all of your prayers and please have a wonderful Easter , I will update as soon as I can .
thank you
Maria

Wednesday, April 12, 2006 11.28 pm

Thank you to everyone for all of your kind messages , prayers , thoughts and guestbook entries , we appreciate and love to read all of your messages .
Sammy-Joe has only had a half hour nap today , I suspect he will sleep through the night as he is extremely tired tonight , but refuses to fall asleep , he is sitting up in bed reading books and playing with his toys , talking to himself and having a conversation on the play phone with some of his imaginary friends .

Christian hasnt been feeling well at all for three days , he also has woken up with a stiff neck and has been complaining about all morning , he has also talked about how hard it is for him knowing that one day Sammy-Joe may not be here with us , he is starting to open up alot more today , he is also talking about the trip to America and how he wishes he could find a cure for his brother .
We had parent teacher interviews this evening with his teachers , they are all wonderful and had lots of nice things to say about Christian .

Well , I am hoping to add some more photos tomorrow , once I pick them up from the pharmacy , I still havent had a chance to do this , tomorrow Daniel will be over for a while to play with Sammy-Joe and help care for him , so I am hoping I can get out to do some grocery shopping and also pick up the photos .
Please pray for Aunty Kathy as she has just undergone surgery for a liver transplant , she is in intensive care at the moment and I would love for all our friends to say a special prayer for her , she is a wonderful lady , very kind , generous and caring for others all the time .
I have been praying for her alot lately and I am hoping God can hear my prayers , Aunty Kathy has been a wonderful caring soul towards Sammy-Joes situation and I will never forget the kindness she and Uncle Vince have displayed towards us , it is now their turn for prayers, especially for Aunty Kathy .
Maria

Wednesday the 12 th of April 2006 1.02 am

Alot of people are saying that I had forgotten how important it is to give thanks for everything I have received to do with help regarding Sammy-Joe, but this isnt the case at all , every single day I am grateful for every bit of help I receive to have my son with me on this earth , I know how blessed we are to still have him as many of the children have passed at an early age .
I am grateful for all of the help I have received in the past four years since his diagnoses , I am grateful for the family that have still stuck by us , I am grateful for all the help I have received from community , from organisations that do wonderful things for families such as ours , I am forever grateful to the Lions Club of Melbourne Markets for all the time effort and love they have given us and all the extra added things they have done for us , I am forever grateful to the friends I have made through out this and am saddened by the ones that have chosen to walk away from us .

I am endlessly grateful to the doctors and scientists that have worked hard at helping us to understand his illness and to the doctors that have supported every step in everything I have tried to do to help raise awareness , with out these wonderful talented gifted people , some of our children would not be here today , this special week , Easter Week has reminded me to be grateful for all the wonderful things that these beautiful special people have done for us and families such as ours , I am also very very grateful to each of you that read this Journal every single day and pray for us , I am grateful for all of the prayers , cards , thoughts , letters , toys and presents that each of you send to Sammy-Joe , without you all we couldnt get through our days , your simple acts of kindness to us is like a string of hope holding our very precious thread of life together , keeping us in a faithful light , we feel all the love from each and everyone of you and in our times of darkness you draw us back into love and light , reminding us that there is God .Thank you for everything that each of you do for us . we love you and will always hold you dear in our hearts .
Maria

Monday the 10th of April 2006 1.58 pm

Sammy-Joe still isnt well , and Christian isnt feeling well either , Sammy-Joe has still got a chest infection and is not eating much at all , he has lost his very big appetite and is saying he isnt well , because he is so congested ,but the other problem is his swallowing and chewing issues the doctor is thinking we should now send him to see a neurologist .
His eating and chewing and swallowing a now becoming a big issue , its been pretty hard on him . I have to blend or vitamise most of his food now and even then he will choke on certain foods , no answer to this puzzle ?????, Sammy-Joe has lost some weight , but not too much .

Well , Daniel is here now to play with Sammy-Joe so I going to hang out the washing and do some much needed housework .and have a shower .
Christian is laying on his bed , he has a pretty big headache and says he isnt feeling well , looks like we will have another week of going to doctors .
Hope you all enjoyed the photos , I am going to the pharmacy tomorrow to pick up the other photos that I had developed , I will scan them and show them to you , some are still from Sammy-Joes birthday and others are from Christians , and mine , I have been a bit slack and financially strapped thats why I havent had them developed yet ., , I am interested to see whats in them also , there was six rolls of film to be developed

hope you are all doing well ,please do sign our guestbook this way we know you are here and have been reading .

Monday the 10th April 2006 8 am


Here are some photos from Joes Bithday , Sammy-Joe is all partied out now , he is definately due to have a rest , except next week we have Easter ,,lol ,, more partying I guess ,,


kisses for Dorothy



The weather here has been pretty cold , so Sammy-Joe tried to venture out again in the evening , but came back in as quickly as he went out ,, he said it was too cold to stay outside ,even thou he has layers upon layers of clothes on him .

Joe blows out the candles , he is 42 years of age now .






Sammy-Joe loves his daddy .

SUNDAY THE 9TH OF APRIL 2006 9.38 AM

HAPPY BIRTHDAY TO MY HUBBY JOE , FATHER OF SAMMY-JOE AND CHRISTIAN , HOPE YOUR DAY IS FULL OF LOVE AND GOOD FORTUNE , PROSPERITY AND GOOD HEALTH IN ABUNDANCE .
SAMMY-JOE WANTS TO HAVE A PARTY AGAIN , SO IM OFF TO THE STORE TO GET SOME PARTY HATS ,STREAMERS AND BALLOONS , I WILL ADD SOME PHOTOS LATER ON IN THE DAY .
SAMMY-JOE IS OFF TO THE DOCTORS TOMORROW FOR HIS USUAL CHECK UP ,LAST NIGHT HE HAD A TEMPRETURE , BUT I FEEL IT COULD BE BECAUSE HE VENTURED OUTSIDE YESTERDAY FOR HALF AN HOUR .I am not going to stop him from trying these things and am prepared for the outcome , I know he needs to live his life to the fullest , that he can and if it means venturing outside in the afternoon for thirty minutes well I believe he has to do that , he needs to have a good quality of life and I am sure Sammy-Joe is a good judge of his limitations .
Maria
Saturday the 8th of April 2006 11 pm


Sammy-Joe had quite a wierd day today , he woke up as if he was hung over from a party , he looked all sleepy and was quite irritable and was bothered by noise , he wanted the place quiet and calm , but at the same time , he was not any of those things this morning , by around mid afternoon , he finally fell asleep for about two hours after giving everyone around him a hard time , it was quite the contrary to yesterdays beautiful Sammy-Joe , his behaviour was quite different and he was behaving as thou he had the world on his shoulders , I guess I need to remember that Sammy-Joe is a teenager as well , although intellectually he isnt , but his body is going through some of the hormonal changes and so he is quite moody at times .
this evening around five before the sun started to go down , he decided he wanted to go outside for a little bit of a wonder , he said he needed fresh air and so he stayed out the back for about half an hour , just watching the birds and looking at the dog and cat , he also looked for the turtle and rabbit , I was saddened by the fact that Sammy-Joe doesnt get to enjoy his life like other kids do and that he is so limited in what he gets to do , I am grateful for the little things that he can enjoy and when I see him happy I am happy , but oh how I pray that he could do more .After half an hour outside , the longest he has been out for a long time , he started to say that the sun was hurting him and that he was scared so he went back to bed and fell asleep for another two hours .


Sammy Joe wondering outside this afternoon , looking at the trees and birds , just enjoying being outside for a little while .





Friday later in the evening , 7.01 pm


Daniel arrived to be with Sammy-Joe and wow , how excited was Sammy-Joe ,,he was so excited he greeted Daniel with a big hug and said ""Happy Birthday Daniel "" we were very proud of him , Daniel was very happy , Sammy-Joe wanted to have a party with him and the toys straight away , here are some photos I took to share with you all



sAMMY-JOE loves Daniel and considers him to be his best friend he is always saying ""MY BEST FRIEND"



blowing out the candles together




They spent the evening playing party games and pretending to have tea parties with the toys and blowing up balloons , Sammy-Joe loves playing party and at least this time he had a good reason to celebrate .





wearing party hats and masks is so much fun !!!



Sammy-Joe enjoyed playing with the streamers and balloons and had so much fun with Daniel , they loved eating cake and looking for the toy sheep .

they were having a ""wiggly party ""


it was hard for us to leave them ,but we had to go watch Christian play his game of Basketball , I will update tomorrow to let everyone know how Christian goes with his rep game tonight .






Friday April the 7th 7.51 am

Thank you to everyone that checked in on Sammy-Joe , and I appologise for the lack of updates .
Sammy-Joe has been feeling a little better lately , but still has a very annoying cough , he keeps saying to us that he still feels sick and wants to sleep more , during the night he will try and sleep and has managed to get at least a three hour sleep from about 4 am to 7 am , he is now sitting up in bed reading books .
This last couple of days has been a bit hard on Sammy-Joe as he has been quite irritable and annoyed at how he is feeling , he trys to pack bags around the house with clothes because he keeps saying he wants to go to America to see the doctors , to me this is a sign that he isnt feeling well at all . Sammy-joe has always been a great judge of his own body and often even when he couldnt speak would try and tell us that the lights and sun were the reason for his illness , so I am trusting him now as I have always trusted him , I know that he isnt feeling well at all .I am hoping by Monday when he sees his doctor again at the hospital she will give me some indication of what she feels could be happening .

Today is Daniels birthday , Happy Birthday Daniel , Daniel is Sammy-Joes carer and Sammy-Joe loves playing with him every friday , Daniel will be coming tonight so I have arranged for them to play some party games this evening , I hope Sammy-Joe is up to it , we will be off to Christian s basketball match this evening so we will miss out on all the fun .Today is also Uncle Alberts Birthday and my dear friend Rosa s Birthday , Happy Birthday to you all .
On Sunday its Joes Birthday ,Sammy-Joes daddy , we are hoping to have a little cake for him , for his 42nd Birthday ,, hopefully I will have some photos to share providing my camera works , its been playing up lately .


I took this photo this morning to see if my camera works ,,
dont they look great , two brothers together forever ,,



Hope you all have a wonderful weekend , its been a hard two weeks on Sammy-Joe , I am looking forward to some more positive days ahead , please do remember to check in on him and please do sign his guestbook , he loves me reading him all the entries .

Maria

THURSDAY APRIL 6TH 2006 7.07 AM

SammyJoe slept all night for the first time in a long time .

I will update later today.

Maria

Wednesday the 5th of April 2006 7.30 am

Sammy-Joe is starting to feel much better these days , I think finally the antibiotics are setting in to his system , he seems a little calmer with his breathing and the cough is starting to ease up .
Sammy-Joe slept much better last night , but me on the other hand didnt ,I had trouble sleeping , had a headache and kept thinking about our trip to the USA , I am hoping that all will go well according to Plan , but I know this isnt always the case especially with our lives , our lives are always so constant and things are forever changing so unexpected hickups is something that I should be used to , but I know I still dont cope very well with things just springing up at me at the last minute .
Today , I want to try and finalise everything for the trip and hopefully get myself organised .
I will keep you all updated as soon as possible .
I want to appologise for lack of updates also , usually I update everyday , but lately I havent had much to write about , the weather seems a lot easier on Sammy-Joe these last couple of days , its been pretty cold so covering up hasnt been to bad on him , although he has only ventured outside in the evening s the last couple of nights for about ten minutes at a time .
Christian has had a couple of his friends come over and play this week and they have done homework together , so its been a bit busy in our house the last couple of nights .

Maria

Monday April 3 rd 2006 9.46 am

Sammy-Joe coughed all night again last night , he was pretty tired because he isnt getting much sleep and so he was a little miserable , he got up around 7 am sleeping only for about two hours , he decided he would watch the Wiggles on the computer , he looked so sereal I thought I would take a photo of him to post on here ,



Sammy-Joe loves Dorothy and the Wiggles .



I have also posted more photos of our yesterday , here they are

this is my gorgeous Uncle Sandy and Aunty Nancy with grandpa Joe (NONNO JOE<and my hubby Joe (sammyJoe and Christians Dad) having a relaxing time watching the lovebirds and newly engaged couple Daniel and Donna with Donna s boy Mitch








Sammy-Joe loves Donna and Daniel , he also loves my uncle and aunty and his grandparents very much , he absolutely adores his dad so it was good for him this morning to see these photos on his webpage , he kept laughing and smiling .

Congratulations Donna and Daniel hope your life together is wonderful and happy always .We had lots of fun with you all yesterday ,thanks to Uncle Sandy , Aunty Nancy , Donna , Daniel , Mitch , Nonna Emilia and Nonno Joe for giving us a great Sunday , Sammy-Joe enjoyed everyones company .






he has gone off to bed again now and is sound asleep with Dorothy next to him , I hope his cough doesnt keep him awake .



Sunday, April 2, 2006 10.41 pm

Sammy-Joe was awake all day today , he didnt sleep a wink , he wanted to stay awake as my cousin Daniel came over with his new fiance Donna , Sammy-Joe was so excited he wanted me to light candles and make the place all romantic and nice for her , we set the table with some munchies and also champagne glasses and then we waited, patiently for them to arrive from Geelong , it was a very enjoyable day , Sammy-Joe was happy all day today , in the morning he seemed a little on edge , but by the afternoon he seemed calm and peaceful , he didnt cough or complain about being sick until tonight , his fever started up again , I gave him some meds and he is now sitting up in bed reading some books .
Today Sammy-Joe and I got to sit on the swing together for about 20 minutes in the afternoon , he seems to be ok around 6 , 30 pm sitting under the verandah , he enjoyed watching and listening to everyone around him today , I was very happy to see him smiling and happy .I am so glad the weather is turning cold now , I feel more comfortable with Sammy-Joe venturing out in Autumn and winter , summer is a very hard time for him , it was so good to see him laughing and having some fun , although he is still not well , I was happy to see him smiling .








I will add more photos of him tomorrow
Maria

Sunday the 2nd of April 2006 12.35 am

Well after a whole three days of being terribly unwell , Sammy-Joe looks like he is starting ,slightly to perk up , my beautiful friend Rosa donated a computer chair and a swing seat for him so that he can swing sometimes when he ventures out in the late evening , yesterday around 6.30 pm , Sammy-Joe decided he wanted to try and sit on it for about 15 minutes , the weather was perfect for him , as it had been raining and the sun was going down , the UV was very low and the tempreture was very cold , he loved being out there for 15 minutes , after all of that , he wandered back inside and fell asleep for the evening , which tells me he still isnt well at all, especially because he is sleeping at night , not a "norm" for Sammy-Joe .




Sammy-Joe heard that Footy season had officially started so he wanted to find his bomber Jacket and hat so he could wear it , he wanted to stay up to watch the footy , but was too tired to cope with it , he kept saying ""go Bombers "" and then fell asleep , he is quite funny at times and makes me laugh when I see him trying so hard , I love him so much and sometimes I find it difficult to see that he is really a small adult , because in his mind he is really just a young child ., I will always see him as my precious little boy .

He spent the day playing with Daniel his carer , while I took Christian to his game , Christian had a great day , although his team lost , he was extremely happy because he shot three 3 pointers all in a row , the first time ever for him , so he was pretty pleased with himself because he knows he can do it now .
Joe was busy pottering around in the garden and when Christian got home from Basketball he ran to his dad and told him all about the game , I havent seen Christian this happy in a long while , Joe and I were both pretty surprised .Christian is such a handsome young man now , its hard to stop being over protective of him ,,must be the italian in me ,,lol,he always reminds me not to embarrass him by saying he is always my baby boy ,,lol .
Saturday evening was so cold , it reminded us of the beginning of winter , which I guess is what we have been praying for so that the weather can be less harmful for Sammy-Joe , we hope that he ventures out a little more in the afternoons and gets to get some fresh air in his lungs .
I love seeing both my kids smiling and happy , I pray everyday that Sammy-Joe can be well enough again and oneday soon get to come and see Christian play basketball again , its been a long time since he has and I just pray that he can do it one day again ,, soon . I know I need to pray for a miracle .

Friday 31 st of March 2006 7,09 am

Sorry for the lack of updates , Sammy-Joe has been unwell for the last three days , he has been running a high tempreture and has been having problems breathing , the doctor saw him yesterday and said he has a throut and chest infection and has decided that the MRI be rescheduled , he doesnt think it is a good idea to put Sammy-Joe under anethestic with a fever , the hospital staff have agreed and have said its best when he is well , its too risky otherwise , in the meantime , Sammy-Joe has been miserable and has spent the last two days trying to sleep it off during the day and then coughing all night long .
I am feeling very tired lately and havent had much sleep . looking forward to some brighter days , have been praying hard for some positive things to happen .

Christian has been also worried for Sammy-Joe and seems to wake up during the night to check on him also , I have told him not to worry , but he keeps telling me he is extremely worried for Sammy-Joe lately because he hasnt been himself for a long time .
My friend Christine came over to give Sammy-Joe her girls toy kitchen , she thought once Sammy-Joe is feeling better he might want to pretend play , he loves the kitchen , but still isnt well enough to enjoy it , I have prepared some playdough for him also , so this way he will have something to pretend cook .
We have been trying new carers lately and I have needed some ideas to help them entertain him , but because he is so unwell , he hasnt wanted to do anything , he just lays around and sleeps most of the time , I am hoping the antibiotics kick in soon .
I think we will have to wait another month for the MRI , I will let you all know when he is due to have it done ,he has some appointments next week at the hospital .

I want to apologise to those who check on Sammy-Joe daily , I am sorry I havent had much of a chance to update as often as I would like , this weekend we have a busy basketball weekend , I am hoping I will get a chance to update by Sunday .
take care and please continue to pray for us .
Maria

Tuesday 28th of March 2006 2.49 pm

Happy Birthday Grandma Emilia , Sammy-Joes nonna , Sammy-Joe woke up this morning and remembered it was his grandmas (nonna) birthday he sang Happy birthday through out the morning until he got tired and fell asleep holding Dorothy the Dinasour , he slept most of the day as he wasnt feeling well and so I got to do most of the washing and caught up on some letter writing . he woke up a couple of times and complained of a headache , he is finally up and now is playing with his carer Almina , he seems to get on very well with her and enjoys her company , they are playing with some toys right now and talking about them .

I am looking for some ideas on how to keep him occupied and entertained when he is awake during the day , its very hard on Sammy-Joe when the days are so sunny , we are going to expect a sunny week with a high UV level which means no school again for the next couple of days , and then Friday he is back at the hospital .

I will have to scout some of the local garage sales around town to see if they have any educational toys that could help to keep him entertained .

Christian has been enjoying being back at school lately and last night was pretty tired , so life is seeming to be back on a normal scale for us right now .

Tonight , I will try to get to my mums to wish her a happy birthday , I am hoping that Sammy-Joe also will be well enough to go , otherwise he will have to stay at home with Joe and Christian and I will have to go for a couple of hours , its so hard on us when we have to keep doing things separately but the main concern is Sammy-Joes health and if he isnt well enough then , its important that he stays home .

take care
I will post some photos tomorrow

Sunday, March 26, 2006 11.19 pm

Sammy-Joe has been very quiet all weekend , he has been complaining of a headache and also saying that he is tired , I am a little concerned for him , he is due to have his MRI on Friday and I am hoping he will be well enough , we have had a weekend of warm weather and so this too has taken a toll on him .

Christian played basketball on Saturday and he played very well , his team won and he scored 12 points , he has been very happy all weekend , he also had a friend sleep over on Saturday , so he and his friend Matty were pretty happy all day today , the sad bit now is that school starts tomorrow again , they are all sad this evening , they kept saying how lucky adults are , but I explained to them that school is the best years of their lives and they need to enjoy it .

Sammy-Joe wont be going to school tomorrow as he is still isnt well enough ,he needs to sleep , today he had a little nap , but spent most of his day doing relaxing things , like laying in bed reading books , he also watched some videos and played with his blocks .

I will keep you all updated on the weeks events , today we also had a visit from my God son Ethan and Byron and Michael and Kim , Christine and her children, Courtney and Chantelle came over to visit today also , we had a busy Sunday , with lots of kids playing and laughing , Sammy-Joe seemed to be happy watching the kids play , its sad that he cannot go outside with them , but he was happy to watch them at times through the tinted window .He also sat and watched an episode of BRUM with them and had a few laughs .

Maria

Friday, March 24, 2006 11.pm

hello beautiful friends , thank you for taking the time to read this and checking in on Sammy-Joe .
Today was a weird type of day for young Sammy-Joe , he just wanted to sleep the whole morning and late into the afternoon , then once he woke up , he ate and washed up , changed pyjamas and then wanted to cover up even inside ,, he wore his hat , glasses and jacket for about an hour and a half , until he felt safe enough inside , he sometimes is so light sensitive , he just wants to sit in the dark .

and then at other times he feels safe enough inside our dark little home and tends to just sit around and watch tv , he will take out every single video out of the video cabinet until he finds the one he is looking for , he will then sit there quietly and watch it over and over again , sometimes for hours , memorising every line and song , he has an amazing memory , incredible , I know that this is his autistic side , where the memory is amazing , learning word for word in routine what the lines are to a song story book or video .
sometimes he will also want me to read a book to him over and over again until he memorises every word and then he will read it to himself or to his toys , he has been so interested in learning what words are lately , he goes around the house wanted to know what names mean and words are on items , I believe this is fantastic as he has never really shown interest in words before , I am so impressed with him . he amazes me


watching a video in the afternoon with my friend Christine

Thursday March 23 rd 1.43 am

Unusual for Sammy-Joe , he is actually sleeping early tonight ,he said he wasnt feeling too well and wanted to sleep , he is running a low grade fever again , so I am not sure again where this is coming from ?

Today was quite interesting , Sammy-Joe was awake for most of the day which again is unusual for him , he played in his room , while I met with more people that hopefully will be coming in to play with Sammy-Joe . Christian has been a little bored also on the holidays , but said he is happy enough to just lounge around at home , he is a good kid and doesnt really expect too much from this situation , he just wants whats best for Sammy-Joe , Christian is s gift from heaven . I am lucky to have both my kids .

i REALISED today finally ,,, that no matter what people think of you , what matters the most is what you think of yourself and having Peace of Mind , if you dont have that you dont have anything , the last few weeks I have been battling with this , but today I realised that I have done everything I can to help Sammy-Joe and our situation and I will continue to do so , for the rest of Sammy-Joes precious life and that should be enough to give me Peace of mind .

thank you to everyone that has been here supporting us every step of the way , I am so fortunate to have wonderful friends such as you all .
hugs
maria

Tuesday, March 21, 2006 10.38 pm

Sammy-Joe got to do some playing today with some new people , he enjoyed their company and was very well behaved .
Christian has been working hard on his homework , a project all day , today was a pretty calm day ,I got to speak to Julie today , she called me from America , I love hearing from her.
Iwill update more tomorrow , please say a prayer for all the people in Queensland that have been devastated by cyclone Larry , the after effect is terrible and some people have lost their homes and livelihoods .

Maria

Tuesday the 21 st of March 2006 1.52 am

Good morning to you all , I Hope you are all doing well and feeling happy ? After a hurricane of a week , I have had a much calmer day today , Sammy-Joe wasnt well again and slept most of the day from about 10 am to 4.30 pm . In the early hours of the morning he was up reading books and playing with his toys in my room , he wanted to play picnics again , its so funny how we are up during the night when the rest of Melbourne is probably asleep and having their third or fourth dream .

He finally fell asleep at 6 am only to wake up at 9 am , stayed up for an hour and then decided he wanted to sleep again , I am feeling pretty much like a train wreck right now , my body is so tired and my head is filled with so many ideas an thoughts , I am trying hard to calm myself down .

Today I had the wonderful pleasure of having the company of my two friends Christine and Heidi , I am so fortunate to have good friends around me and am very grateful to have them , I am also very fortunate to have good family around me , my mum and dad are very precious to me .My mum came over this evening to play a little with Sammy-Joe , she stayed for only about a couple of hours , she hasnt been too well herself so its been a little hard for her to keep up with him lately .

My friends Brooke and Simone called me a couple of times today , but unfortunately I missed their calls every single time ,I will try and catch up with them also tomorrow , its strange how sometimes the phone never rings and then their are days when it doesnt stop , usually its pretty quiet , I think alot of my friends are senseing how sad I have been feeling lately .

I guess I have come to learn yet again another important lesson in life , that sometimes you cannot totally trust someone to do the right thing by you no matter how much they truelly know you , or much you know them , sometimes things happen to change the relationship and this is when hurt sets in .

I am sad because no matter how much I open my heart to people , sometimes things seem to get misinterpretted and unintentional misunderstandings happen even when you try hard to always do the right thing by people , it saddens me to think that people have such high expectations of me when they know what position I am in , my priorities are Firstly Sammy-Joe and Christian , so whatever I do in life its always surrounding my circumstances with my children , I know I have my priorities in order , and even then I always make room for my cousins , family , friends and many other people in my life , so it saddens me when people would say or do something negative towards my family , my children and especially towards Sammy-Joe .

I ask you please to think about living the way we do everyday and please find compassion , understanding and love firstly and forth mostly in this situation , and with also other families that struggle everyday to try and give their children with an illness a good quality of life , think how much the parents must go through and how much it means that the family does endure every single day , it isnt something that should be taken for granted and it should not be taken lightly .

I am trying everyday to think of all the positives that have come out of our situation , always concentrateing on Sammy-Joes gorgeous smile , his infectious laughter and his cheeky antics , all the things he gets up to in a day to keep himself amused , he has not ventured outside for a long time now and even then when he did last week , that was the first in a long time , see how much , us the people with regular living take for granted , the simple thing of going outside is the hardest thing for Sammy-Joe to have to endure .
I am fortunate and lucky to have him , to have Christian with his beautiful caring nature , his understanding , patience and cheeky smile , I am grateful to have all of you that each and every day come to visit us and to those who pray for us , thank you thank you for being here , it gives us great comfort to know that we are not alone on our journey .

Monday 20th of March 2006 2.40 am

Sammy-Joe had a quiet sunday ,Joe and I however did not , we had a few discussions with other family members that did not go too well , sometimes its hard to try and make people understand our situation , I know you cannot make anyone do anything , but when its family members that do not want to understand the seriousness of our situation its difficult to try to help them understand anything , if they themselves cannot see what we as a family go through every single day , well then its pointless trying to help them understand . Sammy-Joes life is hard enough and me wasting energy on trying to help people to understand something that is clear , honest and infront of their noses , then its pointless .I would much rather not see them than to have to explain myself over and over again , time and time again , Sammy-Joes situation is real , clear and upfront , its obvious to everyone that meets him , what he goes through every single day , the people that know us and spend time with him , get to know what we go through every single day , what he goes through , what we all go through as a family , how so many things that others take so easily for granted are so difficult for us , like something so easily taken for granted by others , is going out together as a family , for us its something we can never do , we must make a major decision on how it will affect Sammy-Joe , not only the uv light factor , but also the possibilty of the crowds upsetting him , then there is also the fact that he doesnt cope very well during the day and so often wants to sleep . there are many factors that we must consider when even trying to think about an outing and 9 times out of 10 , I will stay at home with Sammy-Joe , while Christian and Joe venture out during the day , if and when we try to do something as a family it is always at night and this too is far and few between , the last time we went out together at night was just after Christmas , I remember because it was a warm night and I did document it in my journal here .I think I am getting tired and emotionally drained having to explain our situation over and over again , but I know and I guess its something I will be doing for the rest of Sammy-Joes precious life .

Maria

Friday SAINT Patricks Day the 17th Of March

It was wonderful to receive your email and your messages , I have been praying all night that
God give me some kind of sign that things will oneday get better , I find
peace and comfort from your emails and whenever I read them I know I am not
alone and that you are right here beside me , praying with me that oneday
soon Sammy-Joe will find relief . Tonight he gave me , Christian and my
cousin Daniel a big scare , he was choking on a piece of onion , because he
is having trouble chewing food , he swallowed a piece of onion whole and it
got stuck , we finally got it out , but that few seconds was the longest in
my life , I felt like I was going to lose him , I cried and cried after that
for a whole hour , knowing that oneday I will have to say goodbye to my
beautiful baby , the realisation that he could die anytime was too much for
me to bare , Christian held him and said , dont cry Mum , we have to pray
for a miracle .
And that was our evening , we were all quiet and just looked at each other
after that , even my cousin Daniel was shaken by the experience . we love Sammy-Joe
so much and we cannot imagine our life without him , we are not ready for
him to leave us just yet .
Please pray for Sammy-Joe and please do continue to leave messages for him , we all get great comfort from them .




Thursday the 16th of March 2006

Thank you to everyone that has checked the journal lately to see how we are doing , I m finally getting better , the flu is starting to slowly go away .
Sammy-Joe isnt so great thou , he is still struggling with it and has done alot of sleeping , when he is awake thou he seems to have a huge burst of energy, that will only last for about two hours and then he falls alseep again , yesterday , my friend Robyne came over with her three gorgeous children .Sammy-Joe even sat outside with them on the trampoline for about twenty minutes under the big umbrella , it was around 5 pm and the uv was around about 7 , but as you can see in the photos he was fully protected , it was good to see him trying to socialise with the kids , Harry , Ruby and Tess are gorgeous kids .
Today it must have affected him that bit of light exposure because he had a poop issue again , he got the symptoms of sun stroke , where all he had to do was run to the toilet and also be changed every minute , he kept saying "'too much sun ", he did alot of sleeping today also , and has some blisters again on his hands and legs .




this is another symptom of too much light .





it was so good to see him happy thou and sometimes we have to really have to decide whether that little bit of exposure is all worth it to see him happy .He needs to do things like others do and it isnt fair that he cant ,



I am still praying and hoping that one day we will be able to build him an indoor playground .




Maria

Sunday, March 12, 2006 11.02 pm

Its been a long hard three days for me , fighting this flu has drained me terribly , I feel emotionally drained , physically drained and mentally exhausted .Its kept me deep in thought I am a deep thinker and I have been inwardly thinking many things lately , I am starting to feel my dreams of changing things for children and their families with Trichothiodystrophy slip away from me , I have tried endlessly to raise awareness and also tried to set up a seperate trust fund for families with Children with TTD in order to help them and to make sure no other children go undiagnosed, but I am having trouble finding people to help me with that .
I remember when Sammy-Joe got his diagnoses how it felt for us that we finally had an answer to all that was happening to him ,, after 13 years of not knowing , not understanding why our child was so sick , we finally started on the road to understanding and all the pieces of the puzzle began to fit into shape .
the importance of raising awareness on TTD was an inner strength that kept me going not only for Sammy-Joe but for many children and their families who started to be in contact with me , finding out that there were other families helped us understand we were not alone through all of this .
Constantly appealing to the public , asking for help and trying to make sure that Sammy-Joe has the best quality of life in the circumstances that we are under , has strengthened my soul in more ways than I can count , but its also been challenging , exhausting and tiring constantly asking for help , but without peoples help and the help of kind generous people this dream cannot come to a reality , and Sammy-Joes survival would be none , I had set up a mission of what I wanted to happen and here it is ,, but somehow I am not sure if I can reach my goal or if it will take me many more years to accomplish , every time I look into my sons eyes it makes me more and more determined to succeed , in his name , in his honour , but lately I feel as though I am doing it all alone again .



VISION
All persons affected by these conditions to have early diagnoses, early treatment of symptoms, early developmental and behaviour screening, and continuity of care in their family home, growing to live independently; thus fulfilling their potential

Sunday the 12th of March 2006 1.10 am

Today was a struggle for me , a struggle to get out of bed , to get moving around , I had no energy at all. but I tried my hardest to force myself to do things , like make breakfast for the kids , lunch ,look after their needs and just try and get myself into some sort of energy mode , I am still very congested and very ill , the flu has taken its toll on me , food doesnt agree with me and I am totally not ready to even begin to feel like I am over this yet , my head is aching and I feel so sad for Sammy-Joe because all he wanted to do today was sleep , he feels as awful as I feel , its just not a nice flu not that any flu is nice anyway ,, its definately awful !!!
I will be so glad when its out of our house and gone forever , I hope we never get the flu again .

Saturday March the 11th 2006 1.13 am

I have been sick for two whole days , I have had a fever , flu and aches and pains I have been sneezing constantly my nose hasnt stopped running and I have gone through at least four tissue boxes , my throut has been on fire and my head feels like its going to explode , I would not wish this even on my worst enemy .
My mum has been helping me out with the kids and everything , thank heavens for my mum and dad , if it werent for them I would have no help , Joe has to work and so he couldnt take any time off at all . I have slept for two whole days imbetween all the moaning .
Sammy-Joe and Christian were very worried about me and they have checked on me constantly , please pray for me because I need to get better to tend to my family , there is only so much my mum can do and she isnt made of steal and isnt getting any younger , she is truelly amazing with what she has coped with lately .
Maria

Tuesday, March 7, 2006 and Wednesday March the 8th

Christian has been sick with a fever , cough and sore throut , he has been off school now for two days , the doctor has given him antibiotics , Sammy-Joe is also sick , it must be because the season has changed now , the Autumn weather is so refreshing , I love it , but I dont like my kids being sick . Thank goodness the doctor said to let Christian rest , he has lost another kilo , it could be all the physical activity he does ,and he does watch what he eats , he is becoming a fussy eater .

Sammy-Joe s jaw joints are inflamed and this could be part of the reason why he has trouble chewing , he tends to grind his teeth a lot and sometimes this can cause inflamation , he has a lot going on in that mouth of his right now , I am hoping that next term will be much better for him with attending school , it saddens me to think that he doesnt get to go as often as he would like to , being sick all the time doesnt help , yesterday he spent the whole entire day sleeping , now he is in bed reading his books , sneezing , coughing and complaining of a sore throut .
Christian is still asleep also , he said he wants to rest and make sure he is better for the game on friday , heaven forbid if he were to miss it , he loves basketball and says he wouldnt miss it for the world , he has to miss five weeks of the season in June and July when we are going to America .
I am looking forward to our trip and looking forward to seeing all the doctors again , this time it will be better as Joe and Christian will be with us at least we will be a family , when I was on my own with Sammy-Joe , it was very scarey and I sometimes wonder how I managed to be so brave .

Thank you to everyone that has left beautiful birthday messages , it always puts a smile on our faces to see how much Sammy-Joe is loved , thank you also for all of your prayers and kind thoughts of love .
Maria

11.11 am Monday the 6th of March 2006

heading to the doctors now , Sammy-Joe isnt well , please pray for him . I will update later .
before I head off I wanted to talk about what its like for a parent with a child with a chronic illness , I know I have touched on this often , but its times like this that I feel I should talk about it ., a diagnoses such as this can pull the rug from beneath your feet , you never get over the numbness , its a body blow that we have to bear , watching Sammy-Joe struggle when he is unwell reminds you constantly that we are not invincible , I used to think we were , but now I know we arent ., friends are so quick with kindness ,,, and just as quick to resume their own lives ,and only the truest ones stay around ,
society at large fails to grasp the pain we parents feel when you get a devasting diagnoses for your child , your work may give you compassionate leave,and friends may offer compassion , but not for too long and not in excess this is why I couldnt continue to stay in the work place , as a result sometimes because i was grieving too long it started to feel indulgent if not shameful , and the pain begins to burn inwardly , and this is not to mean that we are not grateful for every single moment we have with Sammy-Joe , but the grief of knowing that your child has a chronic illness , life threatening , can be like living with a time bomb in your mind , times like this you get worried if a simple cold will turn into something more serious .We also feel isolated because we feel ashamed of the grief , I wonder sometimes if I am falling apart or if I am not coping , so then I look for inward strength and try and shrug the pain of the grief away and consequently I begin to feel alone ., its almost like I dont have or get permission to feel sad , or angry or even hurt ..
I know that everyones grief is unique , I understand all of this , and I also know that my family is my passion and that I wouldnt trade my love for them for anything in the world , this is what keeps me strong and helps ease the pain or sadness ., these blue days pass .


please pray for me today , to keep the sadness away , I think I have the blues as much as Sammy-Joe does , please pray for us to continue to be strong and have faith that things will get better .
Maria


6th of March 2006 Monday Blues

Sammy -Joe woke up with the monday blues today , he was crying and didnt want to go to school , he is still complaining of mouth pain and the medication isnt really helping , he had a rough weekend and is extremely tired , he is alseep again , sound asleep . so no school today , we will try and see if he can get at least two days of school this week. in on whole term he has only managed ten days of school , which I think is a lot better than last summer , its so hard on him , he has to cover up so much , then he gets too hot , irritable and annoyed and not mentioning the sweat , I feel so bad for him , but there isnt much we can do in summer . at least in winter he can cover up as much as he wants .
Christian played for his new team on Saturday , although he played well , they still lost , which isnt too bad as these are grading games anyway . On Sunday he had his presentations for his old team , he got a trophy with a photo of him on it , he seemed pretty happy with the weekend and has gone off to school again this morning .This is the last week of term , so hopefully next week we can all get some rest , the holidays will also mark the beginning of the Commonwealth Games in Melbourne , the city will be buzzing with excitement , I am going to try and stay clear of the hospital in this time , as it will be terrible to even drive in to the car park , I bet .
Anyway , I think Sammy-Joe is finally over his birthday celebrations , I will try and add more photos once I pick up the photos from the Lab .
Hope you all had a wonderful weekend , I know they come and go so quickly these days .
Maria



4th of March two days after Sammy-Joes birthday and he is still happy and in birthday mode

Sammy-Joe is still in birthday mode and wants to celebrate all week long , I guess thats kind of like any other teenager .except he seems to have the enthusiasm that a small child has because of his child like mind , I love seeing him so happy and I wish everyday could be happy for him .When my kids are happy , I am happy .

This is a photo of JUNCO an exchange student that is staying with my neice Melanie for two weeks , we had the pleasure of her company for Sammy-Joes Birthday , I am sure she was overwhelmed and excited to be amongst us , Sammy-Joe was equally as excited to have her at his house .





My friend Jane sent me an article from England about a lady that has a similar outfit to Sammy-Joes Nasa material suit ,the blue suit he has on the photos was material sent from Nasa to us, this is the material that the astronauts use to protect themselves from radiation ,
it was interesting to see that now in many parts of the world they are discovering other sun sensitive illnesses , I appreciate anything similar to what Jane has done , if you know of any other people that may be suffering with a sun sensitive illness please do send me their details or send mine to them because I would like to keep in touch , I believe the more we link together the better it is to raise awareness on the condition (. thank you Jane for always thinking of Sammy-Joe and me }


well once I develope all the other photos , I will post them on here , there is plenty to look at

More on Sammy-Joes Birthday 2nd of March 2006

Sammy-Joe , aunty Rose , baby cousin Alysha and aunty Connie and nonno Joe (my dad )


Christian and me


Simone and me .



Simone and Sammy-Joe and me with his wonderful balloons








Happy Moments .making a wish









Sammy-Joes Birthday cake , he loves Dorothy from the wiggles


tuckered out



Sammy-Joes Birthday ,, happy birthday beautiful boy

Sammy-Joe has been excited about his birthday all day ,
here are some photos , he has had a little sleep this morning , but he has been talking about his birthday all day , he keeps saying ""Cross my heart ,, its really my birthday ""




I picked up his Dorothy Cake , I will take photos of it and put them on here as soon as I can .
Thank you to everyone that remembered Sammy-Joes birthday .


March the 2nd 2006 6.51 am

Yippee , its Sammy-Joes Birthday today


to Sammy-Joe
Happy Birthday beautiful little man , yesterday at the hospital you were fantastic , we love you so much and treasure every moment with you .


its good to see you enjoy your presents and the simple things are what you love .
Sammy-Joe was great at the hospital yesterday , he was very co operative and he allowed the dentist people to do what they had to do with him , they feel we should wait a couple more weeks as some of the impacted teeth look like they are coming through . so they have given me an antiseptic gum gel to use on him for a couple of weeks , this way he wont feel so much pain when he tries to eat .I hope this will help with the chewing problem .

these are a couple of photos with some of the presents we gave Sammy-Joe , the simplest things are what he loves , especially stuffed toys , puppets ,and balloons .




he wanted a big yellow hat , a big bird puppet , some balloons and he also wants a Dorothy cake , I will take some photos of the cake and update as soon as I can .








Wednesday the 1st of March at 9.50 am


here are some photos I took of the boys , Christian is clowning around with his dad , I took it because I loved seeing him smile



and this one is of Sammy-Joe this morning trying to work out which Video to watch , he loves going through the cabinet and taking them all out ,, big job for me later , but it doesnt matter as long as he is happy , thats what counts to me .
seeing my kids happy makes me happy .



Wednesday 1 st of March 2006

Tomorrow is Sammy-Joe s Birthday , wow he is happy , but feeling sick , I too have woken up with a sore throut and sore ear , we are off to the hospital today , I hope things turn out better for him and they finally get to the bottom of these teeth issues he has been having .

Sammy-Joe ventured outside yesterday afternoon , he sat in the shade under our pegola for about 15 minutes with my mum , he then walked around a bit to see the garden , but said he had too much after about five minutes of doing that , it was around 6.30 in the afternoon , but the UV monitor had a reading of 5 , so the UV was still pretty high at that time .
Although he was covered he still got some rashes and also a couple of spots on his legs . he had flannelette clothing on and the UV protective clothing on top , suncream and his hat and glasses , but still it wasnt enough , I pray that one day he can venture outside with less clothing and enjoy being outside , I know that that may never happen and it isnt a reality for him .
Thank you for stopping by and thank you for all your thoughts , messages and prayers , I look forward to hearing from all of you .
Maria

tuesday 28th Feb 2006 10.38 am

Sammy-Joe is asleep , he has a fever and has a runny nose , he has been complaining of a headache.
I have been speaking to one of the mums that had a child with TTD that passed away about three years ago , her daughters name is Sarah , she was five years old ,she contacted me through the support network, Genetic Support Network of Victoria , it was great to speak to her , I had a bit of a cry , and we exchanged stories on our children , she said she would love to meet up with us oneday , this way she can give Sammy-Joe are big hug , she says that after reading his webpage she acknowledges that sarah and Sammy-Joe have a lot of similarities , she is very sad that Sarah didnt survive , she feels very strongly that the health system failed her some how .
this makes me more determined to try and change things here , this child passed away with complications from the illness and because it wasnt diagnosed until after her passing , it is very frustrating to know that sometimes our health system can fail us , only due to the fact that not enough research has been done here in Australia .
please pray for this family , as a result of Sarah s passing , Sarahs dad could nt go on and sadly ended his life also , please pray for my friend Mary , as she is still grieving the loss of her daughter and now of her partner .please pray for all of these precious children that continue to struggle everyday , please pray for their families and their sibblings that also must endure hardship every single day .I have encouraged Mary to try and put together a webpage of her precious Sarah , this way her memory can live on , she has been thinking about it and will call me next week , she has told me its ok for me to write about what we spoke about in this journal , at least some how Sarah can start to be remembered .
thank you again for stopping by , I will keep you updated on Sammy-Joe s progress .
Maria

Tuesday Feb 28th 2006 7.25 am

Yesterdays appointment went very well , the doctor is happy with my progress and has told me I dont need to see him , but I need to continue to have my regular checks from my doctor and he will decide if I need to have more mamagrams and ultra sounds , he is confident that we have gotten rid of all the bad lumps , I am a very lucky girl , I AM VERY VERY GRATEFUL TO THE LIONS CLUB ,especially Thomas , Julie Sandra , Ross , Pina and Tony , Uncle Vince, Aunty Kathy ,Tony ,Patricia ,Nancy and Joe ,Amelia and Santo , Irene and Ritchie , and also my Cousin Lino, Belinda for recommending me to them ,
if it werent for them . I wouldnt be here today .

My friend Simone took me to the doctors appointment yesterday , it took us over an hour to get there , lucky I had her with me because if it were for me driving it would probably have taken me three hours to get there , as I dont know the area , it was great to spend the morning with her , we also went out to GlenFerry Road shops and had a look around , we had lunch at CAFE VAMP a nice little cafe , the staff were friendly , what I did notice is that alot of the people were extremely friendly in that area of town , I will definately go out with Simone again , if I get a chance to , she said it was funny to see me out , because I looked like a kid in the Candy store , looking at everything with wonder , I mustnt notice that I do this , because others have commented on this , my behaviour before , well I think its cos I really dont get a chance to go out and when I do I really like to look at my surrounding s , I guess I am trying to take everything in at once .

Sammy-Joe had a good day at school , the teachers told me he , cooked , he had art , music and most of his specialist classes , he was pretty exhausted by the end of the day and now is running a low grade tempreture , he wont be going to school today or tomorrow as I have some more appointments for him at the hospital .

Christian was pretty happy after school , he is starting to display more affection for me in public , the first thing he asked me was if the doctor said I was all clear from the cancer , when I told him yes , he was so happy he kissed and hugged me on the street , which I thought was unusual for him as usually he is quite shy and embarrassed . I was very proud of him .
I love my children so much and there is nothing I wouldnt do for them , I would risk my life for them , I know how passionate I am about the people I love and am never embarrassed or shy to stand up for them , so I hope that my children can start to display some of these characters within them .
Christian will often describe me as a strong person with a strong will , I am soft , caring, emotional and sensitive also , but I guess he doesnt see that side of me often , he tends to see me as the person who can do anything , he oftens tells me this and sometimes , he will say ""YOU help me mum , because you are strong and not afraid of anything ""
really I am just a regular mum , wanting whats right for her children .
I hope you all have a wonderful day .

take care
Maria

MONDAY 27th of feb 2006

Going off to the doctors today for me , when I think back to all I have been through , I am grateful that I am here today and to all the people that helped me through it all , they will always have a wonderful place in my heart and soul .

Sammy-Joe woke up very grumpy this morning , but decided he wanted to go to school ,it is very gloomy and dark outside and its going to probably remain like this for the rest of the day , the UV being low today has helped encourage him to go , he covered up a lot thou , I am still a little worried about his teeth as he hasnt been able to chew and now is choking on a lot of his food . On the 1 st of March he will visit the Dentistry department again , hopefully we can decide what to do then , I am guessing he will have to have surgery .
Christian has been happy all weekend , yesterday , he and I went to the Craigieburn Festival in the morning , Joe and Sammy-Joe stayed home , because Sammy-Joe wanted to sleep the day away , there were lots of things happening at the festival and Christian met up with a lot of his friends , I walked around with some of my friends , it was a pretty good morning , when I got back home , I sent Joe off with Christian as the festival was still on , it was good to see everyone getting along , Sammy-Joe liked the balloons I bought home for him , I tried very hard to encourage him to go in the afternoon , but he didnt want to , he said there was still too much light for him .I felt very sad that he misses out on alot of fun things , things that others take for granted .
well anyway , I have to start getting ready , have a wonderful day
Maria

Saturday, February 25, 2006 7.41 pm

Christians team won the Grand Final today by five points , it was an exciting 45 minutes , Christian and all the players played well , we had a bit of an issue where another player from the otherside attacked some of our players with aggression and he was sent out of the stadium with a tech foul against him ,a bit of bad sportsmanship on their half , but otherwise our kids were great and tried not to let the other team upset them too much .Except that one of players also got injured and was taken to hospital , I have been praying that he is doing ok , I will let you all know how he is doing .


Sammy-Joe stayed home with his carer and the whole time I was thinking that how sad it is that he isnt able to enjoy watching his brother play basketball , he cannot go anywhere , its very unfair .Christian shot a goal for his brother Sammy-Joe , he made about 12 points today , but just missed out on being mvp player , usually the highest scorer on court for the day wins the award , he missed out by about 2 points , but was happy that one of his team mates received award .
Christian was cheered by his team mates three times and acknowledged for being the highest scorer all season , we have presentations next weekend and so maybe hopefully he will get an award ,, fingers crossed , the players all received a trophy today, Christian was very proud of his .

The Craigieburn Festival is on this weekend , but we have had a lot of rain this evening , so looks like we wont be going there tonight , I am disappointed ,because I wanted to take Sammy-Joe , never mind looks like it will be a quiet night at home , we will watch the footy .well I will update tomorrow
thanks for all your prayers and thank you for stopping by

The following comment is from Brooke to me , I love my Brooke

We should never expect anything more from ourselves than what we produce on the day. Otherwise, we get exceptionally tired, bored and don't know how to change,I understand its easier to forget the good things when you have a bad day and for some reason the bad always wipe out the good

But maybe WE need to put things in perspective and remember its the little things that count
Maybe, we need to place all the little things together to make a happy moment and that is what matters! Everytime SJ laughs thats a happy moment, everytime Christian gets a hoop at Basketball is a happy moment however those not so good days of when SJ is feeling really average or Christian is in a bad mood it reminds us of how good the happy moment feel,
Everyone is old enough and agly enough to stand up for themselves so you should never feel like your upsetting someone,
You need to remember your voice isn't only your voice, its SJ's too.

Friday 24th of Feb 2006 7.30 am

Ok , its the end of another bad week , but that s ok , I am pretty confident that things will improve and besides its Sammy-Joes birthday week next week , so we have to make it positive and fun for his sake , he needs to be surrounded by happiness , love , care and lots of brightly coloured balloons , he loves his birthday as much as he loves Christmas , so I am going to try and make it special for him .its on Thursday ,but usually we celebrate his birhtday for a whole week after the day , thats why we call it the birthday week .

Today we are off to the doctors again at the hospital Sammy-Joe didnt have a good day yesterday as he kept saying he was sick in the stomach , then he had a poop issue where he kept wanting to go to the toilet , when this happens it means he has had too much light exposure , he wasnt feeling well at all , and tried to sleep most of it off .His teeth are still playing a big part in his eating problem , he cannot chew food and spits half of it out ,he is starting to get very irritated about the whole situation , I am equally as frustrated and would like this sorted out for him , but I understand in the public system things take time .
Christian has a basketball game tonite with his rep team and then tomorrow he has the Grand Final , he still hasnt got his certificate for his 50th game played and I had an issue last week with some people over it , I am still trying to sort that out .
He is excited about being in his Grand Final on Saturday ,he is usually the highest goal scorer for the team , and so he feels a little pressured .
I havent been sleeping too well lately , I have had a few headaches and feeling a little down about things , which I know is quite normal for our situation , but I would much rather concentrate on the positives .
Joe has been looking forward to the start of footy season , he loves the bombers and they are playing a practice match on this weekend , he said at least he has something to look forward to also , he is anxious about Christian s Grand Final and is hoping that they do well .
Well thats about it on the Liistro household , I hope you all have a wonderful weekend , I will write in later to let you all know how Sammy-Joe is doing with his health , please continue to pray for us and thank you for stopping by.
Maria

Feb 23 rd

Sammy-Joe wont be going to school today or tomorrow as he has some appointment s to attend to , he has managed this term to go for a full six days ,which I think is a great effort for him , as it is summer the worst time of the year for him .
thank you for all of your prayers and kind messages , it has helped me through a very hard time lately .
Maria

Wednesday 22 nd of Feb 2006 8.29 am

Happy Birthday Melanie , My niece Melanie s birthday today , I hope your day is full of happiness and fun .


This morning my son Christian told me I am worse than a ""SHARK ATTACK "" Which of course made me laugh because all I was doing was asking him to get ready for school for the trillionth time ,,lol,, the mood in our house is still pretty tense and everyone is still on edge and I seem to be copping the brunt of it all .

This week seems to be getting progressively worse and everyone seems to be on the"" attack Maria "" phase , so I am not sure what Christian meant by his comment , I have been careful with my words , but things keep getting worse , I have convinced myself that may be this week I shouldnt speak unless I am spoken to , but the minute I am spoken to , the words seem to be sharp , harsh and negative towards me
I am very sensitive right now so anything that sounds remotely negative has me in tears at the drop of a hat .

Some people have placed judgments on me and have gotten upset by things I have done and achieved with Sammy-Joe , some have said that things have come easy to me , and this is not true at all , I have no idea what they mean by easy ,,because nothing about Sammy-Joes illness has been easy , I have worked hard at trying to give him a good quality of life and have had the help from wonderful organisations who have witnessed and have come to see what we go through every single day , I am grateful and thankful to these wonderful people ,and without them I feel like I could not have achieved no where as near as what they have helped us to achieve , I hope and pray that they still bare witness to our plight and continue to help me with achieving my goals and our aim of helping other families and their children to deal with TTD .

Setting up a trust fund is not easy as some people think it is , you need to know people in influential places and also you need the help of a good solicitor , taxman and then you also need help in fund raising , if you do not have this behind you then the job can be hard and challenging .You also need to expose your personal life to the world and you have to not be embarrassed to speak out ,I once said the hardest things in life is asking for help , and telling some one you love them , this is all true , ask any other family that has been through what we have and they will tell you the same . Continuing to ask for help is something that families with children that are critically ill find them selves doing all the time , its something that needs to be done , because without everyone elses help , how do our children survive??? .Sammy-Joes survival depends on everyone else s help ,
without all the fundraising efforts and public awareness , without all of the help that we have received
Sammy-Joes quality of life diminishes , we have achieved a goal once and we are taking him back to America in June again , where we will meet up with the doctors to work out where we go from here to do with Sammy-Joes survival , the scientists and doctors are constantly working out ways to try and understand this terrible illness , and are constantly researching ways to find out how to give these children a good quality of life . To these wonderful and talented doctors and scientists I am forever grateful
This trip will probably be our last as we know and have accepted that Sammy-Joe may not live to a ripe old age.

In saying this .I am not sure how and why , I have been told that I have had it ""easy "" I would ve hoped that these people or certain people could ve understood and walked a mile in my shoes to really , truelly understand whats its like to live with the knowledge that your child will die before you and never get to live a life like some Can , he will never be able to play freely in the sun , drive a car , go on a date , he lives like PeterPan in a childs mind ) , or simply live by day , all this is terribly challenging to him , our beautiful son , sleeps by day and then plays by night , socially isolated , just being with me or with his grandmother ,or sometimes his carer , (carer time is still scarce , we still only get 8 hours a week and we are being asked to cut this down to 6 ,, how is this easy ?) So"' NO" life hasnt been and I suspect it will not be easy for Sammy-Joe , we are all trying our best to give him the quality of life that he deserves and to all the people that truelly love him , care about him and his family , which includes me , I am very very grateful to you all , and you will always be forever in my hearts .

In situations such as ours there should never be jeolousy or envy , these two evils should never come up to surface their ugly heads , but unfortunately they have , and to those people that feel them resurface , just please stop and think what life is really like for a child with an illness , what life is like for their families , how hard it is and Surviving becomes the key word and only word in their life .

The word Survival means getting through every single day , when things seem hard and tough , when the only thing you see are four walls , darkness and the same people day in day out , and knowing that one day your precious child will not be with you because life is too hard for him and there is no cure for what he has .
Surviving the mortgage when the medical bills or expenses become the only thing you need to focus on , surviving the long stays in hospitals , and watching your child go through immense frustration because he is sick of being poked and prodded with needles , and just sick in general .
And then think of the child that has the illness , think of how every second , minute , hour is precious to them and their families ,, please people think ,, think before you speak ,,please .

Monday, February 20, 2006 and now tuesday 21st of Feb 2006

As yesterday progressed it got worse , the more I spoke to people the worse it got , people around me and everyone I spoke to were all on edge , I felt that the week of dread had not ended , I shouldve stayed in bed , I am no closer now to finding the cause of Sammy-Joe s chewing problems and pain , so we have another appointment on the 1 st of March , to see if we can find out what the issue is , on Friday we have another appointment to see his Doctor again and we will try and get blood tests happening , lets cross our fingers and see if we have a better day .

heres still hoping for a better week .
Maria

Monday the 20th of Feb 2006 7.28 am

I would have to say , that ,, this weekend was the worst weekend I have ever experienced , I just kept getting myself into trouble and being upset by everyone , I dont know why I bothered to wake up in the morning , after a horrible week , I thought the horrids would be over , but noway it kept happening , so heres hoping that today is the start of a happier and less so confronting week , and heres hoping I dont rub anyone else the wrong way without realising , I think I need to dig myself a hole somewhere and stay in it till its all clear ,,lol,, well I hope your weekend was better than mine ?
take care
Maria
ps we are heading to the hospital today , lets hope that goes well for Sammy-Joe .

Sunday 19th of Feb 2006


Christians basketball team Killer Bees are in the Grand Final ,

yes they won yesterday !!

so next Saturday will be Christian s FIrst Grand Final , I am very proud of all the boys , they played as a team and won the game by about 22 points , Christian made about 18 points ,

Next Saturday will be the last time he plays with these boys as next season he is going to another team . I hope next saturday they win , its been a good time for Christian and he has enjoyed playing with these boys , I am very proud of him for ""sticking it out"" as he was going through a time where he thought he wanted to leave .

Sammy-Joe had a better day yesterday , Daniel his carer came over to play with him , he always has tonns of fun with Daniel , they play flat out with his toys and they talk and talk , Joe also stayed home with them as there was no work for him this weekend at work , he has been thinking of trying to get a second job , so that we can survive financially ,things are getting pretty tough right now .

my friend Simone came over also in the evening and she commented how great Sammy-Joes language is now , she said she is amazed at how wonderful he speaks and how fluently he pronounces all his words now , so I guess this is something I havent noticed because I am always with him ,
others that dont see him all the time can really tell when something is different in Sammy-Joe .

My friend Christine also spent some time with us and she enjoyed playing XBOX with Christian for about two hours ,

this weekend I have been in the "wars "with some people .without me even realising what I have done wrong ,and un intentionally upsetting someone .



I have realised somehow that asking simple questions can rub people up the wrong way and trying to get something out of people that are in situations , where they may have the resposibilty to do so , can sometimes be tricky ,

I just want people to know that if I am polite to them it would be common courtesy for them to be polite back to me , but I guess it doesnt always work that way .I have to start toughening up and also try and understand that not everyone out there is as nice , as polite as I always try to be .


It gripes me to think that people dont always think before they speak and I think its something that these days the people in the world can so easily forget , I know I am just generalising and I also know there are people out there that are good , kind and sweet , polite and caring , I just think this weekend I have nt come across too many of them ,,lol,, well at least I have my friends,, they were there to witness it " the incident "and were as equally shocked in what happened .

This Morning Christian has to go get his photo done for the Basketball team KillerBees , as they will still get a trophy weather they win or lose in the Grand Final .

I also have my aunt and Uncle coming from Geelong to visit us , so we have a busy day ahead , tomorrow Sammy-Joe will be visiting the hospital again for his appointments , so no school for him , the weather looks like its going to be cooler , cloudier and rain , yipppeee !!! just what we love .
take care and thank you for stopping by and visiting us .
Maria
please have a good weekend and please sign the guestbook so I know you have stopped by .

Saturday the 18th of Feb 2006

Time flies from us so fast we are already getting close to Sammy-Joes birthday and I havent started to organise a thing yet , on Monday we are headed back to the the hospital and hopefully tuesday Sammy-Joe will try and return back to school for a couple of days ,he has been talking about some of the things he misses from school , this is a good sign as it means he may feel like going next week .
He is on so much pain relief for his teeth , I am keeping the pain killer companies in business I am sure of it , as well as everything else .
We are so broke this week as we had a lot of bills to pay and I am feeling a little down hearted about ourlives , it seems I may have to try and get a job some how to keep up with everything .
I am hopeing that the doctors here decide to also put him in hospital overnight before his MRI on the 31 st of March as he will not be able to cope with the fasting procedure. He usually copes if he is already admitted into a room and is calm , I have been trying to convince them this is the better way to handle Sammy-Joe , but they just wont listen to me , I am starting to feel like what I say means nothing to them , although I know my son and his behaviours and what is the better way to handle him like the back of my hand , they still want to try their way , it will put Sammy-Joe through a lot of trauma and everyone else ,I am not sure why they wont listen to reason .
Well I am a little frustrated about the lack of understanding lately , again ,, I know I probably sound like a broken record , but I am finding that keeping calm and letting others decide whats best , is just adding to my frustration inside , I know the key choices are not mine to make , the big decisions have to be talked about with influential people , like it or not I know I have to consult in people that have authority over certain things and proffessionals that deal with this type of thing everyday , I need to seek their co operation and negotiate for their support , but somehow they do not support me , some of the doctors here still do not support me, I am not sure whether its because of red tape or what ever they need to deal with , the powers that be , but I seem to get bulldozed into a different direction each time or just left waiting for months for some kind of answer for things and its frustrating , it reminds me of when he was not diagnosed for years and I had to continue to tell them that there was something seriously wrong with my child ,
in the mean time Sammy-Joe suffers .How is there justice in this , my son has been in pain for months now and eventually it will have an impact on his whole well being , I am not sure what to do now and how to persuade medics here that things need to be done sooner than later , I feel so much time has already been wasted , and time is precious for children with TTD .
Maria

Thursday February 15, 2006 10.04 pm

Good Morning to you all , or good evening in different parts of the world . I hope your Valentines day celebrations went well , hearts , flowers ,love , kisses and hugs to everyone .

Sammy-Joe slept most of yesterday and woke up in the late afternoon , he is not well and is running a low grade fever , some of his hair has fallen out again , and on Friday I wlll see if I can get him in to see the doctors , Sammy-Joe has been pretty lerthagic lately also , so this shows me that something is not quite right .

He love s my mum and perked up a little when she came over for a couple of hours to read him books , lay beside him and talk to him about how gorgeous he is and how much she loves him ,,lol ,, he loves her very very much .
He is still having trouble eating as he cannot chew the food now like he used to and so this tells me that his teeth and gums must be the culprit for the fever also .

Christian has been trying to entertain Sammy-Joe with all of his antics , jokes and songs , its really funny to watch him trying to cheer him up , Sammy-Joe loves his brother a lot and during the day when he is awake he will look into his room to see if he is still here , he misses him when he is at school .
Christian is very protective over Sammy-Joe and sometimes doesnt show it , but will voice these things to me when we are alone , he always is concerned about people teasing his brother and worries about what people say about him .

I have been doing a lot of catching up on my housework and trying to catch up with friends on the phone and via email , I have been so busy being a mum I havent seen or heard from people in a while and so I have tried to get a hold of them all .
Dont forget to remind yourselves to let the people you love know how much you love them, because you never know when it could be the last time you see them , life has a way of shocking you and recently I heard from a friend of mine that told me one of our friends from HighSchool is no longer living , this was a shock to me as I havent seen her in years and when she told me I was saddened by the news ,, life is so weird sometimes the people you think will or could live forever are the ones that dont .

I am going to make it a habit to tell people how I feel about them even if its annoying ,,lol,, I know where my kids get there sensitive and sentimental side from ,,, Me , because I can be a bit mushy at times and sound like a Hallmark greeting card ,,lol ,, well I better sign off now , I have a busy day today , we are heading for the hospital for an appointment again .
take care
Maria

Tuesday, February 14, 2006 2:13 PM CST and Wednesday at 7.14 am

Happy Valentines day to everyone in the USA , we had ours yesterday , wishing everyone I love a beautiful day .

I didnt really have a good day yesterday , I had a massive headache , the day was ordinary and seemed a little dull here , Christian and Joe went off to the Basketball to see the Melbourne Tigers , at one stage they were losing , but then they won , Christian was very happy to have spent the evening dong something that he loves with a passion , I guess that made his Valentines day ,,lol , well I guess the day is all about passion and love .

Sammy-Joe was much calmer and still wanted to sleep a lot , his teeth are still giving him grief , we are going to the dentistry department on Monday , hopefully they can work out what to do for him .

I will try and get his blood tests done also , Hopefully I will have more luck with him co operating , he has nt been the best lately .

Its almost the end of summer here , thank goodness , I hope Sammy-Joe gets to have some cooler days and some more days of attending school . I also need to start organising things for his birthday which is coming up on the 2nd of March ,, he will be seventeen ,,wow , I cannot believe it .
I am so grateful that God has allowed this to happen and that he is still with us , Sammy-Joe has endured so much through the years , but his determination has shined , he has achieved so much when I think about it , the doctors that said he wouldnt talk , walk , run , or ever understand , or live past a certain age ,, boy were they wrong , he has proved that you must never say never .

I believe the old saying There is science , but then there is GOD .my grandfather kept telling me this when I was about 8 , back then I never really understood what he meant , but now I do

thank you for stopping by
GODBLESS YOU AND HAPPY VALENTINES DAY , please remember to tell the people you care about ,, how much you care because you never know what tomorrow will bring .

"Stop telling God how big your storm is.
Instead, tell the storm how big your God is!"

special journal entry monday night 9.59 pm

Hello everyone
Thank you for your beautiful messages in my guestbook ,

its now 9.35 pm here , I hope it isnt too
early in the morning for you when you receive this email . Your kitchen by
the way sounds like my kitchen , having to run after boys all the time ,,lol
,, and hopefully get them to help with the cleaning .
I just got back from a school meeting for Christian , all his teachers love
him and of course feel for him because of the situation at home with having
to live in a dark enviroment because of his brother Sammy-Joe ,which he
absolutely adores , today Sammy-Joe has been a bit of a nightmare towards
everyone , screaming at us and telling us to leave him alone , he isnt
feeling too good and his teeth are giving him grief .He is laying on his bed
reading a book and just looking pretty sad , he said he loves me but wants
to be left a lone , pretty much the teenage thing I guess .

Christian has finished his homework and is now getting ready for bed , I had
made some gnocchi and spaghetti sauce with meatballs for tea , he said he
had two plates , I was pretty impressed with him as normally Christian
doesnt eat too much , he is always watching what he eats .Sammy-Joe was like
a steam train tonight he just wanted to eat his serve , mine and his dads ,
he has had trouble eating lately because of his teeth so I am sure he was
trying to make up for it tonight , gnocchi are pretty easy to eat as they a
soft like potatoe pasta , this is the reason why I made them , because I was
running out of ideas on softer food for him and plus I needed to make
something that the whole family would enjoy ,, it was a hit ,, no left overs
for tomorrow .


I finished up the dishes also and have wiped the table and cleared the sink
, so I thought I would check on the webpage

Christian is so passionate about basketball , I have to try and encourage
him into other sports , he likes swimming , but not as much as basketball ,
we have tried other sports , but he isnt as passionate , I thought he might
like soccer , seeing as all our italian relatives try and brain wash him
into liking it , but they have nt been successful .
He barracks for Essendon Aussie Rules Footy club and will go and watch the
footy with his dad ,but isnt keen to play , he has started to play cricket
occassionally with his friend Matty , but basketball is still his passion .

We live in Craigieburn , Victoria , Melbourne , which is kind of like a
small country suburbian town on the outskirts of Melbourne in the northern parts ,
have you been to Australia or seen many pictures or movies about Australia ?

please write to me privately and let me know more about you , I am interested in getting to know you all and am happy to write back , love to hear from you all soon
Maria

Monday the 13 th of Feb 2006 1.30 pm

Today was not a good day for poor old Sammy-Joe , he refused to have any tests done , was very non compliant and just screamed the place down , we will have to try again next week , he fell asleep as soon as we got home and I think he wants to forget the nightmare of it all .
He is due to have an MRI done in March ,so they may have to do all the blood tests once he is sedated and under , I am not sure why he is so bad at the moment with not wanting to co operate , he isnt well and is probably so tired of it all , I guess he cannot handle any more at that moment .

This morning he looked a little swollen around his cheeks and mouth ,I am pretty sure its his teeth that are bothering him .

here is photo I took this morning before we set off to the hospital

Sunday the 12th of Feb 2006 11.27 am

Good Morning to you all , I have just written a whole entire journal entry and my computer wiped it out , so this is my second attempt at trying to write my journal entry , I hope everyone is well and thank you for all your messages of support , I agree with you all and even though you cannot sit at my kitchen table you are all here for me and having computer friends is just as good as having friends that can meet you in person , thank you for all your support .

Sammy-Joe has been a little strange lately with his behaviour , he hasnt been feeling the best so this has amplified some of his naughty behaviour , he is doing what a five or six year old would do to get attention , and although we pay him lots of attention , he still feels the need to tantrum at times , so on SATURDAY he was in full swing , I had to leave him with his new carer which I felt sorry for , she was so nice , she enjoyed working with him , but he did try to give her a bad time .

Christian had a fantastic time at basketball he scored 26 points for the game , the team won and are now in the semi finals , the score was 52 to 26 points , the team was so happy and I was proud of them all because they played as a team .
Sammy-Joe isnt going to school tomorrow we have another appointment at the hospital .

Maria

Friday Feb the 10th 11.24 am

I have noticed that I get down and upset whenever Sammy-Joe isnt having a good day , I feel like this also when Christian is having a hard day , today was extremely difficult for Sammy-Joe , and this upsets me immensely .
I wish there was something more I could do to change things for him , but there isnt , I feel like I have done everything possible to help him and now I just have to keep trying to make his life as comfortable as I can , it breaks my heart to see him in such pain and anguish , I wish there was something more I could do .
I pray that God helps me find a way to make Sammy-Joes life easier .


We are back from the hospital , things didnt go as expected , Sammy-Joe was very upset and refused to have his xray OPG done , he was tired , grumpy and very upset , he didnt want to stand up away from his wheelchair and didnt want to remove any clothing , he kept saying he wasnt well and wanted to go home to sleep , he said he is sore all over and then had a sore tummy , he has some blisters on his tongue and in his mouth and some all over his legs , he is now asleep .
thank you to everyone that checks in on him everyday and thank you to you all that have left beautiful messages in our guestbook , I love and appreciate all your prayers and am happy to know that I have friends in all parts of the world that take the time to think of us , pray for us and send us mail .Thank you for all of your support , and please continue to sign and visit as often as you can

love and hugs
Maria


Thursday, February 9, 2006
Sammy-Joe returned to school today , the weather was perfect for him , he was excited about going back for another day , he had some time off again , and I guess this made him catch up and rest his tired body, he is pretty strong but yet fragile , he has been sleeping alot even at night which tells me something else is going on . Tomorrow I will be taking him to Hospital for xrays on his mouth , an OPG as I believe his wisdom teeth could be causing him all the pain .
On monday we also have another appointment to attend to , nothing else has happened lately , things a pretty quiet , we havent seen any of our friends for 6 to 8 weeks , everyone is busy , this is adding to our loneliness again and the feeling of being socially isolated has started to return .but understand that everyone has their own lives , life is strange
I have been busy trying to catch up on my letter writing and also still doing the many million things I do in a day as a mother , a daughter , a wife , a supporter of friends and a good listener and friend.

Life doesnt always turn out as expected and it certainly surprises you with the changes in people , I think I am overly sensitive or find myself to be a little bit too attatched once I allow people into my life , but this is how I am. I love Life , and mine hasnt been an easy one I am sure you will agree I have spent the last 16 years of it caring for my sick child , trying to constantly find ways of giving him a better quality of life , and I love people , I guess this is because every chance I get to be around people to me is something we must treasure , you see because we are always so isolated , I value the time that I get to spend with people , its the way the quality of the time is spent , not the amount of time . people these days have no time for each other and this makes me sad .

Maria

Tuesday the 7th of Feb 2006 2.08 pm

Sammy-Joe didnt go to school today , he isnt feeling well at all , last night he started to cry and was telling me that everything was sore and he just wanted to sleep , he has now been sleeping from 9.30 am this morning , he didnt want to get up for school and said he has had too much light , he wants to just sleep it off , he has a slight tempreture which I am keeping an eye on , I knew that eventually going to school would probably expose him to too much light , but at least he tried his hardest and he enjoyed it , he was coming home so happy , he will be home again tomorrow as the weather is meant to reach in the high 30 s , we will try again for thursday as there is meant to be a change in the weather on wednesday night , they are prediciting a storm and then a day of in the low 20 s .

Christian is still doing well and had been enjoying high school so far , it is good to see him happy again , he hadnt smiled in a while .

please keep Sammy-Joe in your prayers , and please do sign our guest book , thank you to those of you that check in on him everyday , my computer was not working again on saturday and sunday , this is why i havent updated , yesterday it was taken to the computer hospital for a complete check and clean , it had so many viruses !!! I hope that doesnt happen again , it felt weird not having my computer for a while .

sorry for such a short update I will try and add photos as soon as I can .
Maria

Saturday, February 4, 2006

Christian had an outstanding day at basketball today , his team won the score was 48 to 22 , Christian scored 22 points out of the 48 , he was on fire , amazing how he loves basketball , on Friday night they also won by 3 points against Collingwood , his confidence is up again , I am enjoying basketball .

Sammy-Joe has been well. he has enjoyed school ,I hope he can go to school again this week .
I will update soon , all is going well and the room is starting to get back in order , The "snake in the wall "" is all under control .

thank you for checking in on Sammy-Joe .
Maria

Thursday the 2nd of Feb 2006 8.14 am

I havent been able to update for a while , cos my computer was doing all sorts of strange things to me and wouldnt let me in to certain sites , including this one , it wont even let me into my inbox , so on Friday ITS going to have a complete check for viruses , I think I have to get the BIG GUNS OUT for this one , anyway , A lot has happened in three days ,, wait for it !!!! ,, you will never believe it ,, Sammy-Joe has been going to school , he has loved it , enjoyed it and is feeling pretty great about himself , the best thing about it has been that we have had the worst ever weather , the week has been gloomy and raining and dark , just like he likes it , at school he is in a darker room and refuses to remove any of his clothing , his room is also airconditioned and the teachers have been great with him , they will let him do what ever he wants , basically if he wants to rest , he will , if he wants to do work ,he will , because he is 16 and he is the transition section , which means he has graduated from secondary and is in kind of the TAFE section in a way , he can choose what he wants to do , they will be having an information night for the parents soon to explain what its all about , I am just happy that he is going and has been all week , everyone was so happy to see him and very surprised to see him .
He has one of his favorite teachers back , Garry was so happy to see him and cannot get over the change in him , he has grown so much and talks so much , he is very happy to see Sammy-Joe looking so well now , he remembers how sickly he was and how tiny he was also , two years ago before we went over to the USA , Garry was his teacher then , so he has definately seen a change in Sammy-Joe .
Also Christian started High School and he too loves it !! so the year has started off well , I was so busy these last three days , because of course we are still dealing with Sammy-Joes room being fixed up .

When I dropped Christian off at his Highschool , he bluntly asked me not to step out of the car ,,lol,, because he doesnt want me to embarrass him infront of his friends ,,he was so funny , typical teenager .
I am just glad he loves High School .

So my first three days of the school term were pretty busy for me , I managed to actually get some housework done without interuptions and managed to cook a nice home cooked meal , I have had the painter in Sammy-Joes room and now we are waiting on the carpet to be laid for friday , Christian is off to the doctors today , he has lost seven kilos in three months and has grown to 5ft 4 inches and the doctor was concerned that he has an over active thyroid , but blood tests have come back all normal , so he is back to the hospital today for more tests and to make sure his asthma is under control also .
The teachers at his school have been fantastic , all is looking great lately , I hope we have this horrible weather for the rest of summer , I really would love Sammy-Joe to keep going to school , if the tempreture stays in the low twenties and is dreary , gloomy and dark , he may want to keep going and feel good about going , he is happy to stay covered up all day long as long as it isnt unbearably hot ,, he keeps saying ""I AM A REAL BOY NOW << I GO TO SCHOOL ON THE BUS AND I LOVE THE BUS AND MY FRIENDS"" I will ask the teacher at school to take some photos for me , cos I dont really want Sammy-Joe to see me at the school as he may want to come home with me ,, so its best I keep away from there for a while , till he really really loves it enough to not want to leave .

I will also add some photos of Christian and Sammy-Joe soon , I hope this update works as this computer is playing up again .

Sunday 29th of January 9.32 pm

wow , I havent updated in a while , we have had a busy week , the furniture from Sammy-Joes room has been all over thehouse for this whole week , we had the plumber come fix the pipe , the plasterer come patch up the wall and the painter is coming tomorrow , then the carpet people will come during the week , so the "snake in the wall " has caused a whole lot of damage , anyway , at least its all getting sorted .
This whole weekend starting from Australia day on Thursday , Christian has had his basketball tournament , they have lost every game ,because they are playing a higher graded division than their own , they have done well to keep up with them all , and I believe its been good training for them all for the pre season .Christian has his last game this morning and since I have taken him to every game , Joe has taken him to this one . I have seen five games so far and I am all basketballed out , I am staying home to do housework ,, and to be with Sammy-Joe . its been a good experience for me also because I have had to drive Christian to stadium in areas that I havent been before , its been fun , getting lost and all and then finding our way home ,,lol ,, Well the beginning of the school year is here , the kids start school on Tuesday , I am hoping that Sammy-Joe will go , because the weather is only met to be 23 on Tuesday , and then 25 all week , I hope God has heard my prayers , because I would really love it for him to start to go , I hope he copes with it , if not we will have to only send him on cooler days and low UV days , he has been talking about his friends alot and saying that he wants to go .so please say a prayer for him , Christian starts highschool on Tuesday , how exciting , he is very very nervous and worried , I cant wait for the first day to be over so he doesnt worry all the time .
well , thats all for the update , thank you to everyone that has stopped by to check on us and for all your prayers , I am grateful to you all .
Maria


Tuesday the 24 th of January 10.40 pm

it isnt easy sharing your life with the world
, I know because now when I go out to our local store , we sometimes get
the positive and the negative response to being in the paper , the positive
response has been that awareness is raised and alot of people now understand
more about light sensitivity , but the negative has been that people
sometimes think that you are trying to become a celebrity of some sort , the
other day I someone made a comment that I was using my child to obtain
celebrity status , this remark was hurtful but I just answered and said that
there are better ways to hit the front page of the paper and having an
illness isnt one of the better ways , this helped me to stop the person in
her tracks , I couldnt believe that this had come out of that persons mouth
, but I guess its just her ignorance .
I know that what we are all doing to raise awareness will eventually help
the future generations of this illness ,so I realise that I should be proud
and never be embarrassed of the truth . the hardest things in life is to be
an open book about your life, asking for help and telling someone you love
them , these have been said to be the three hardest things in life .
it isnt always easy to share everything
I FEEL inside , and I dont often write about it as much as I used to , but
in light of my last surgery , I think its better if I start to express how I
am feeling because to keep the hurt inside isnt doing me any good , I would
like to share it with the world and maybe somehow this can help me to heal
in many ways , sometimes I just write things in Sammy-Joes online Journal ,
but sometimes I just keep everything bottled up .

Today Sammy-Joes room , under his bed was covered in water , he kept telling me there was a hissing sound coming from the walls , he would say ""SNAKE HISSING IN MY WALL"" he didnt want to sleep in his room , well that snake was a burst pipe in his walls , so today I spent my day cleaning up a mess of water , calling the insurance , the plumber and then emptying out his room , my house is in a topsy turvery mess again , furniture all over the place , when finally I thought I got things organised , something else happened to turn our world around again , so we will be waiting for a plasterer , a painter and a carpet man to come and fix up all the damage . poor Sammy-Joe , he is not used to disorder in his life , though he should be lately because things really havent been smooth for a while in the Liistro home . Maybe its a blessing in disguise ,it will give me a good reason to get rid of accumalated clutter , oh well , the other day I was saying I needed more interesting things to write about in the journal , there is never a dull moment in our life !!!
No use becomeing depressed or anxious I think I need to concentrate on the positive .
Maria



Monday the 23 rd of January .7.52 pm 2006

thank heavens for the cool change , poor Sammy-Joe how hard it was for him this last three to four days ,my heart ached for him , thank goodness today s cool change was like a wonderful welcome relief .
Today his carer came over , , she played with him for two hours , she talked to me about how much she can see that Sammy-Joe has improved,she noticed that Sammy-Joe has improved in some of his cognitive skills , she also was telling me that what we go through everyday , is amazing , because regular people with ordinary lives complain about so many trivial things in life , and yes I agreed with her , many times I come across people that feel and think that the most trivial issue can be a disaster for them ,and in all fairness to them , it probably is for them , but I bet those issues are issues that can be fixed easily , or a solution is around the corner .

I am extremely thankful for Sammy-Joes progress, but also have learned a
valuable lesson that I try to remind myself of everyday. So many people get
so caught up in ridiculous worries, and selfish concerns about
inconsequential things. Taps leaking , Bad hair days, rude drivers, which school
their child didn't get into, in-law issues, etc. I don't want to come across
uncaring, or insensitive , but people please! How hysterical it is that someone with such a
great life, healthy & happy children, own their own home, and they are
complaining to me about these most superficial things.
My son can not
see the light of day, he cannot play ,wlak , run outside freely in the sun ,he must wear two to three hats and gloves even if only outside, with solar clothing ,
for 10 seconds or he might get horrible burns that will turn to cancer and be sick for days , even weeks , just by playing outside for ten minutes , I
try to be kind and remember that everybody has their own cross to bear, but
having him in my life has made me truly see what is important and what
isn't. I am thankful for so many more things than I ever had been before I
had my boy with special needs. I am thankful for everything, t.v.,
puzzles, sesame Street , the Wiggles ,The Lions Club , window tint, suncream , good caring people , his smile and his love and the
opportunity to be a stay at home mum. There is always somebody who has it
worse, maybe their child will never smile or speak,walk, live etc.

Thinking and knowing how to be grateful for these things that I do have , and not think about the things I dont have , has taught me to be happy and shown me that although I know it is hard for us , I am still happy to be in the life that I am in .

Maria

Sunday 22nd of Jan 2006 11.16 pm

Today WAS one of the hottest days in history in Jan , the news reader was saying it hasnt been this hot in January since a hundred years ago , and I am telling you it was very very hot .I didnt want to get out of bed and our airconditioner was struggling , it was on all night long and all day today , finally we are getting some relief as the cool change has arrived , poor Sammy-Joe has a heat rash all over his body , I bathed him and tried to cool him down , but he was very hot today , he has been sleeping for about two hours this evening , but I am sure he will be awake most of the night now .

Christian played in his room most of the day as he said it was too hot to do much else .

The rain hasnt come yet , so looks like we wont be dancing or playing in the rain tonight .

I will update more tomorrow , I am sorry I really dont have anything interesting to write about , life has been very quiet at the moment and we have just been at home alot because its too hot to do anything else.
Cant wait for cooler weather , maybe tomorrow night we will go for a drive .

Christian has his basketball tournament this next weekend and Australia day is on Thursday of this week , so maybe I will have some interesting things to write about soon . oh yes and Christian starts highschool soon , only one more week left of the holidays for him .
I am also praying hard that Sammy-Joe gets to go at least one day a week to school this term , fingers crossed for him and also lots of prayers are needed .

thank you for stopping by and checking in on Sammy-Joe and us , we love and appreciate all of your prayers and thoughts and kind wishes , please sign our guestbook and let us know you have stopped by .
Maria

Saturday 21 st of Jan 2006 1.18 pm







Well its going to be a real scorcher of a hot day today , and tomorrow , so looks like we are definately going to be housebound , very housebound . with the airconditioner going



Sammy-Joe is asleep again , he woke up around 10 am and wanted to have breakfast , kept cuddling and hugging everyone , He then ejoyed sitting next to me while I spoke to Brooke on the phone , and decided that he was sleepy again and so he went back to bed , he is fast asleep again .



I called my parents to see how they are doing , my mum hasnt come around to see us for a while , so last night around 7.30 pm I popped over to their house to have a coffee with them , Sammy-Joe was with Joe and sat under the pergola watching Christian play basketball for a while .It was so hot last night also , we sat up and watched dvds with Christian , while Sammy-Joe sat in his big red car watching the wiggles , reading books and just talking out loud alot , he said once or twice "BOY ITS HOT "" it was so good to hear him talking alot , here is a boy that a couple of years ago couldnt string two words together and now he is openly making conversations with people that pop in , trying to interact with everyone that walks through the door .

Around 8.30 pm , we decided to have a BBQ , while we were doing this a mini storm hit us , it was so good to see Sammy-Joe playing outside , the sun was going down and he felt comfortable enough to be out there still very covered up with hats , jackets and thick pyjamas on , the evenings are definately his best time , I wonder sometimes if somehow our dream of having an indoor play ground will be a reality for him .The days are so hard , our house is so small and finding things to do indoors for him can get difficult .

He also needs to socialise , and have more contact with the community and taking walks at night somehow doesnt really allow him this , as everyone is asleep and mostly everything is closed.

Its often hard to find peace in our situation because it can become very frustrating for Sammy-Joe , but not only for Sammy-Joe , but for the whole family , we find ourselves socially isolated and sometimes very much alone .

Sometimes I yearn for the peace and quiet in my mind , the need for more peaceful thoughts about the day , at night the world is silent and this reminds me that Sammy-Joe is definately a moonchild , the world is silent at night , so that the moon and stars can be heard , so symbolic to Sammy-Joe .
We some how have to find humour in our situation ,but how ?I have to keep in mind that the only divine quality people posses is humour , we often use humour to teach ourselves that nothing can change our attitude towards a situation or the effect of the situation upon us more than laughter , for in the ability to laugh at our situation lies the comfort of change , that one day somehow things will change for us .And this thought tied with Hope comforts us , comforts me .



Friday the 20th of Jan 1.22 pm


Sammy-Joe is doing his usual today , sleeping all morning due to the fact that its over 33 degrees outside already and the UV is 15 , he really has the knowledge about his own body and how much he can handle , he definately is a moon child and stays awake all night , the problem is its killing me because I still need to wake up in the morning and function like a regular mum has to , doing housework, cooking , cleaning and trying to maintain the house .
Christian has been taking advantage of the holidays and has also been up all night long with Sammy-Joe and is also sleeping soundly to the afternoon . next week we will have to start getting back into the routine of things because he will start school ,,highschool the week after next , and then this is when I will find it difficult for sleep .
please include us in your prayers and please remember to also pray for all the children of this illness and their families .
Maria


Thursday the 19th of Jan 4 pm


Sammy-Joe woke up this morning at 10 am after falling asleep at 4 am , he had trouble sleeping as he said he hasnt been feeling well and has a sore mouth , sore ear and a slight cough , he has also been complaining of pain . He sat in his wiggles car today and watched the Wiggles concert ,he then ate a bananna and yoghurt , he wasnt feeling well and so went back to sleep about 1.30 pm , its very warm today , and I wish that Sammy-Joe didnt have this condition , these are the hardest days for us , as I feel the pressure of being indoors , I so wish that Sammy-Joe could play at the beach of play under a sprinker on a hot day and get to enjoy himself with his brother , but the fact is he cannot .
So he sleeps his hot days away .
I will update later .



Thursday the 19th of January 2006 at 2.03 am


Have you ever felt like you didnt fit in to society ?
, well I am sure if you have a child with an illness or disability you can understand the feeling that I am talking about , the truth is you probably fit in in more ways than you think , We are all Gods Children , the logic is simple and clear , if you think or feel like your a stranger , the truth is you are not , we are all kindred spirits travelling on a journey and experiencing life in many different ways , we are all affected by each other and the truth is we are all brothers and sisters , if we look at one another with the eyes of our hearts then we can see clearly that what affects you affects me and vica versa , love , compassion , caring doesnt begin with our eyes , it begins with our hearts , it starts from our heart , Sammy-Joe teaches me this every single day , the courage , the love he displays and feels towards us , his family ,his friends , his carers , he doesnt see differences , he shows me that he sees us with his heart , if only we could see with our hearts , then the world would most certainly be a better place , if we close our eyes long enough the energy in our heart will show you how to see with it , and then you will know that we may not all be perfect in physical form , but in spirit we are perfect .what ever is done to me is done to you eventually , life has a way of biting us in the butt so to speak , when we least expect it , and believe me , I will guarrantee if ever you have had a thought that may not have been pure to your heart, towards another person that is less fortunate than you , well then eventually , just maybe, one day in your life you may be the less fortunate .
Today I have thought about how peoples perceptions of others that may not be classed as perfect , can affect an entire community , if the community is seeing things with their eyes and not with their hearts , today I have been thinking about some of the ways people may think and see Sammy-Joe , I am always open to people getting to know our situation better and I am constantly trying to help others understand how children with an illness , sometimes do not fit into our society , only because society doesnt allow them , or too many people close their eyes and walk away , rather than try and extend a hand , or care about them , I am asking for prayers that people will understand and get to know more about what it is like to have a child with an illness , and to remember it is never a mistake when you care about someone ,it is always the right choice to make , to help , to care and to show compassion and love .


Wednesday, January 18, 2006 8.19 pm

Today was a very interesting and tiresome day for me , Sammy-Joes behaviour seemed out of whack today , also my case manager Liz come round with a lovely young lady from DHS , she was absolutely lovely and got to see first hand how difficult my life can be and how hard it is for Sammy-Joe , he definately needs so much more activity , and he longs to have people to play with .His developement would definately improve if he had someone come in on occassion to work with developing some skills .

Today he decided that he didnt want to walk , so he sat in his wheel chair and tried to get a round the house that way , it was very difficult for him , but when he feels like this , he is probably best to try and get around in his chair , he said he had sore toes and sore legs , not sure why , I checked him thoroughly to see if he had any blisters , but only saw a couple of old ones.



He also piled up his toys on his bed , all from sitting in the wheelchair , he seems a little tired also , not sure whats wrong , will have to keep an eye out on him .





He also seemed to want to sleep a bit more today , the UV was on about 13 so it was very high outside , inside we kept the house in darkness as he felt there was too much light today .

Christian started his first basketball training session for the year this afternoon , he hasnt trained in about four weeks , so he was pretty excited about that .

Christian trying to hide from the camera





Me and Christian

I am still not feeling the best , but am trying to get at least ten minutes of sun a day now so that my vitamin d levels will increase , if I could get more carer time , well then I could get to go to see the doctor for another blood test .

My car broke down yesterday and we had it towed away to the mechanics today , I feel even more housebound now because I havent got a car , so life seems to be a little hard again , I havent really had anyone come in and help me with Sammy-Joe for about three weeks now , and I guess this is why I am feeling tired , I havent had a carer for a while , I would like to just have a couple of hours to myself , but I guess thats too much to ask right now , I will have to be patient .



Life doesnt always work out the way we think it will , and at times it seems a little harder than other days , so today I would have to say , it was a hard day for me .
Sammy-Joe seemed to calm down eventually and wanted to watch the wiggles on the computer from his big red car




I havent had my hair done since October and I am feeling like a bit of a shaggy dog ,Christian keeps telling me I need a haircut , but I think I will have to let it grow , because going to the hairdresser isnt even an option right now .lol ,, sometimes I just have to laugh at how hard it is to get out , well I tend to feel it more on the holidays because the UV is so high and going out at night is the only option for us .
In the early hours of the morning around 2 am Christian and I watched A dvd called remember the Titans , it was a fantastic movie with Denzel washington , I loved it , Christian was touched by it , he kept talking about it most of the day today , there was so much I got out of that movie , it really showed that friendship can start from almost anything and any time in your life and with people that you unexpect also , and how quickly it can be taken from you .

Tuesday the 17th of Jan 2006

Christian and Joe were busy working all night on trying to put up a basketball ring , they still havent finished , but its getting there . Sammy-Joe and I spent the day together just reading books and talking about Wiggles videos , Joe bought Sammy-Joe a big inflatable Wiggles Red car for Sammy-Joe to sit in and read his books , he also bought him a Wiggles Quilt set in the hope that he will sleep better at night , but no chance , the quilt ends up going where ever Sammy-Joe goes , he carries it around the house now cos he loves it so much .
I am still not feeling the greatest , but I guess I am just getting old maybe ,lol , someone once told me that when you reach forty your body starts to feel all the aches and pains that it shouldve felt in the past . then again someone else told me that lIfe begins at forty , so not sure which one to believe , I know I am full of aches and pains right now .
My friend Simone came over yesterday , she bought over some cooked Muscles that her mum had made , they were yummy , I love shell fish , and seafood , Its my favorite . Sammy-Joe wasnt too sure about them .
We also had James come over yesterday to play with Christian , he is Christians best friend and his family has just told us they will be moving to Salt Lake City for good , I want to try and see them when we go there in June as they will be moving around May . they want to show me the big Temple and introduce me to some of their family and friends , they said that they want to do special healing prayers for Sammy-Joe ,they will put us up for the week and we dont have to worry about accomadation , just the flight , I have to see if we can somehow manage to get there also , it would be good for Christian to be able to see his friend while we are there , we are only going to be in the USA for Six to eight weeks , I hope I can work that out also .I havent been to Utah and I have heard the hospital there is fantastic also .

Well I am signing off now , I will add some Photos of Sammy-Joe and his big red car , he looks so funny sitting in it !! he makes me laugh , he loves the Wiggles !!









Maria



Monday the 16th of Jan 2006

Awareness and Awakeness leads to a natural progression of new choices and ways of being .


Have you ever had people get angry at you and start saying things to you that were so off base you wondered where they were coming from and if they had mistaken you for someone else ?
Well I have had that happen to me several times in my life and wasnt sure where it was coming from , or the person they were talking about was even me ? I received an email today from someone that refused to identify them selves ,some of the things they were saying was so cruel and awful about children with TTD and about me and what I am trying to achieve , it was so horrid , I deleted it , but it has given me a sense of intrusion , I am not sure why people would want to say horrible things to families that have children with an illness .
If I can learn to separate the attack and the hurt , then I can learn that maybe this person who has sent me this is actually hurting themself and using this attack as some kind of defense system to protect what they are really trying to hide about themselves .
So I have chosen to ignore the hurt and just keep doing what I have to do to help raise awareness for the children of this illness .

I ask also , if you ever do receive hurtful emails , just delete them and know that sometimes people have nothing better to do , if they keep coming , then report them to authorities .
Life is really a series of choices , everyday , we are confronted by choices and decisions , large , small , life threatening , or life enhancing . Each of us is where we are because of our choices ,with children with an illness , they do not have a choice , it just is , sometimes we feel powerless because of this , so imagine what it must feel like to a child , that doesnt have a choice . this is what gave me the power to ignore the email and just keep going with my life .

I remember one of my friends saying to me that the hardest thing a person has to do in life is Change , Change is always difficult , but when we do it then we realise we are on the right track , I believe the moment I deleted the email I was on the right track , because in the past I would ve gotten upset and probably emailed back or maybe done something worse I guess , but this morning I chose to delete and move on .

Yesterday afternoon we went for a drive , a very long drive to Knox City , Sammy-Joe and christian enjoyed it , we also got to have a look at the big shopping complex there , Sammy-Joe wanted to get out for about twenty minutes , he sat in the wheelchair and enjoyed looking at all the stores , once he got tired he said he wanted to go back in the car , the Uv in the shopping centre was on 6 , I measured it with my UV monitor , so I am guessing that Sammy-Joe was feeling the UV through his many clothes , although he did have his solar protective gear on , he still complained a little about it . The UV reading outside was on 11 which is pretty high for him considering he can only tolerate 0 or 1 .I thought he was very brave and couragious to want to try anyway .
The weekend was pretty productive for us , as Sammy-Joe tried to venture outside both days in the afternoon , I thought this was a bonus for him as he is really trying these days as the weather really wasnt too bad , but the UV was still quite high , he has some blisters on his legs and a couple on his hands as he didnt want to wear the gloves today .I guess he knows his own body and he will want to try at times , its awfully hard being stuck inside all summer long . He said he even wants to try and go to school oneday , we will see , because I am not sure how he will cope a whole day in an enviroment where the UV will be high , he may cope with one day and then be sick for weeks on end .


Sammy-Joe is amazing , he has the most amazing smile , I see a smile as a beautiful light shining through a person s face , when Sammy-Joe smiles , he looks beautiful regardless of anything , I believe a smile attracts Angels , but when an Angels smiles he attracts Love .
Maria



Friday, January 13, 2006 later tonight


We are better together than we are alone ,Both Character and confidence are neccessary to aspire Trust .If we know how to listen to our own heart then we know how to listen to others , self awareness empowers us to have awareness on all things . I am aware at the moment that everyone around me is a little edgy , not sure why and where its coming from , someone once told me that the moon affects the moods of people as it affects the tides of the sea , well then , that must be it , the moon is so full tonight , I know because Sammy-Joe and sat in the car and we looked at it for a while , he wanted to make a wish on the stars and he wished he could go to Disneyland , how cute , he also wished that he is better , I think he means cured , or at least well .
Maria


Hello everyone ,
Thanks for stopping by , Yesterday evening we decided to go to the movies with the kids to see Chicken Little , it was a good movie , Sammy-Joe watched it to the end , until there was a large banging sound and then he screamed that he wanted to go home , but at least he coped with watching the whole movie , before the movie he even had a chance to play some computer games , and he watched his brother play some as well .
In the movie theatre Sammy-Joe even chose where he wanted to sit , Christian is such a teenager now and said he was only coming to watch this movie because he wanted a family outing , otherwise he wouldnt be caught dead any where near this type of movie .

Well , at least we went out , I was just grateful to get out , I was starting to get depressed again , I feel a little swollen and unwell , not sure whats happening to me lately , even my mum said I dont look well at all . I am starting to be down on myself again on my appearance and I feel like its too much effort sometime to get out of bed , but I do believe its because I am tired and exhausted and not well , otherwise I am usually the most bubbly one out of my family , sometimes I guess I can sound like a hallmark card , all soppy and peaceful and positive , at times I can hear myself and I want to stop myself from being too spiritual .but my authentic self is that I love to be happy , peaceful , kind to others and care in general .This morning I spoke to Brooke and then in the evening I spoke to Daniel , both are doing ok , they are such inspirational people , I admire their courage and strength .
Its the end of the week and boy how time flys , I was meant to be taking Sammy-Joe to the hospital today , but all got changed at the last minute , I dont mind really as I think he really needs a good break from Hospital .

We will start all our appointments again in Feb , today was the first time in two weeks that my mum has come over to play and sit with Sammy-Joe , I miss her a lot , but understand as she gets older its been harder for her to cope with alot of things , she gets tired very easily and lets face it Sammy-joe can be a handful at times , sometimes his behaviour is so out of character it throws us all off .
Today he is in a throwing frenzy , he is in his room throwing all his toys around the place , he gets bored very easily now and needs to find ways to entertain himself , at times he can be as quite as a mouse , just sitting there reading books , or playing on the computer , or playing with blocks , legos and toy animals . he goes from one extreme to the other at times , I dont blame him though , the summer is the hardest time for him , he doesnt get to do much at all during the day ., he waits patiently for he sun to go down and then he goes outside playing in the darkness, sometimes he even wants me to take him for walks at night , around in our street , I must admit its a little scarey , I venture outside with him and then encourage him to go out the back , where I believe its safer anyway .

Well I just wanted to update , I hope you are all well , I will keep intouch and thank you for all your kind messages I really appreciate it .
Maria

Thursday 12 th of Jan 2006 1.49 pm

This morning I felt so ill , it was so bad the feeling of being sick , it made me start to think about how many small children and young adults start their days feeling like that , I feel for them and I wish somehow there was a way to heal all of their illnesses , I wish A Miracle Pill could happen for all of my friends that have sick kids , there is not much I can do , but offer support , love , understanding and listen to them when they call me , I know that they often will call me , just to know that I understand what they are going through because I do .

I heard from my precious Brooke today , we had a beautiful chat on the phone as we always do and she cheered me up , her beautiful perspective on life is incredible , she is an amazing soul , please go and visit Brooke and leave a message in her guestbook , she loves making new friends , just like Sammy-Joe does .
Brooke Parsons



I often hear from Daniel Frezza and his mum , Daniel is doing better these days also and has setup a MSN site , he would love to hear from people also all over the world , usually we are always at home , or in and out of hospitals , so the computer and the internet , the phone , snail mail seems to be our life lines , I am sure you all know what I mean .Please visit Daniel and let him know that you are thinking of him

href="http://spaces.msn.com/members/danielfrezza/">Daniel Freza

I will update later , when I have something to write about , at the moment , life in the Liistro home seems boring , I am always busy with things and do not have time to get bored , but lately I guess I really havent had much to write about , Sammy-Joe has gone back to bed as he wants to sleep the sun away and Christian is just laying on his bed reading a book , soon life will be hectic again .
Last night everyone was in such a crazy mood , except me , being in a houshold full of boys , showed me that they too go through hormonal stages and take things out on each other , last night , Christian , Joe and Sammy-Joe were at each other all night long , it felt like I was in the Looney bin for while and all I wanted to do was scream at them to shut up , instead I just went to bed and tried to drown out what they were doing , I wasnt feeling well and so I thought it best for me to sleep it off . This morning all seemed back to normal , thank Goodness , I guess everyone has their days .
Well I am signing off now , I will update later , thank you for stopping by and please do sign our guest book , its a great way of showing me you have been here .
love
Maria

Thursday the 12 th of Jan 2006 11 .01 am

I havent been feeling too well for about two days , I have had the shakes and feeling all achey all over , it kind of felt like I had the flu , but with no runny nose , cough or fever , just feeling realy tired , drained , and just want to sleep , it feel like I could have a 24 hour virus , but its lasting for a long time , I also have a bad headache .
The boys have been fine , just a little bored I guess , I havent been able to take them out anywhere the last week , hopefully on Saturday we will go to the movies , or maybe to the zoo at night , we still havent decided because of money reasons , where ever we can afford I guess .



Tuesday 10th of Jan 2006 1.14 am

In light of all that I have to say in my heart today , I believe this may be one of my longest journal entries ever , I want to start off my journal this morning by saying that my days consist of so much , I dont really have time for boredom , and for this I am grateful . Well once I get up which I suspect may be a little later in the morning for me today as I think we may be up until at least four a.m this morning .

Usually I get up and my days are full on , my day consists of housework , laundry , cooking , cleaning , and helping my kids with some of their tasks , changing nappies at least six times a day , toilet training , and being a good supportative mum , I am also a good supportative friend to many families that have children with illnes and special needs . I am also busy helping Sammy-Joe with his needs , self care needs , like dressing , eating , bathing , and just being a good carer for him as well as a mum .
I love speaking to many families that have children with TTD and also offering them much needed support , I write letters to sick kids and also send cards , postcards , happy mail , my day also consists of writing my journal emailing doctors and writing letters to try and raise awareness .I am also involved in running the support group for TTD and also am involved in many prayer groups online and on the phone .

When I offer support to friends that have children with illness or special needs I do with love in my heart and my intentions are to help them in anyway I know how .I look forward to hearing from them , hearing their stories , often with Sad curiosity ,

I will always try and offer help and ways to help excel their lives in any way , Wouldnt it be wonderful what families with children with illness and disability offer to each other , be offered in and actually set out in a program , we sometimes talk about how wonderful it could be and how great it would be , if some of our children could play ball , or run , skip and jump with ease like so called regular kids , my child included ,

Key words that others use easily in their vocab when talking about and use so easily to describe their regular kids , such as , successful , independent , confident often elude us , Even holiday programs make me smile sadly , wouldnt it be great and nice for our kids to be able to attend them with ease , confidence , or even attend them at all .

My SONS illness and developement delay is classified as Global , which means it affects all areas of his life , from head to toe , the source of the delay is from his illness and is poor muscle tone , physically he can be at times , very tired and quite floppy , the low muscle tone also affects his speech , A more current assessment has listed his ability to that of a four or five year old .

I would love nothing more than to have Sammy-Joes developement improve , so that he can read , make art and crafts and attend learning programs with ease , I pray that one day , he is totally toilet trained and totally able to play out in the sun in the day time .

My son Sammy-Joe can count to 20 and sometimes 30 but for some reason 18 and 27 are never mentioned , Sammy-Joe learned to walk at three and half years old , at the age of 16 he still stumbles over his own feet and can only jump one inch off the ground , I dont want sympathy and I think I speak for many other parents that have children with an illness or disability ,

I dont want sympathy , I want a miracle Pill , a miracle pill that will make Sammy-Joe one hundred percent healthy and one hundred percent better .

The next best thing I want , would be an education program to help people understand what its like to have a child with an illness or disability , I dont think any of these Miracles will happen , All I can hope for is that people will try to understand what its like to have a child who will probably never be classified as normal .
My son Sammy-Joe is now 16 years old and is struggling with everyday things that we take for granted , which are easy for us , he has several learning difficulties , The term"normal" in my opinion , is really just a nuisance in the english language and I tend to avoid it or disregard it these days , I tend to cringe when I hear it because the achievements of children with a disability or illness are truelly exceptional and amazing , my sons achievements should be issued an award of courage and merit ,

I remember a very insensitve person at the program he attended when he was about six , she was a mum that was just visiting the children and she said to me I should feel happy that he wasnt walking properly because her child walked at one and he was into everything , this remark was like a knife to my soul ,
it was callous and hurtful and Ihave never forgotten it , but I have learnt from it , there are also other remarks that probably need to be left untold that I have had to hear through the years , I have experienced so much sadness , hurt and grief because of the ignorance , cruelness , insensitivity of others , because of some doctors , therapists , hurtful remarks , because of some peoples lack of understanding and also just from the knowledge of knowing that there are some milestones that my son will never reach .

I have cried buckets of tears even rivers for my son , for the fact that he may never play , experience life like his peers , I have cried tears for the grief that my family feels everyday knowing that this year or the next could be the last .

As you can imagine , the burden of watching your childs confusion and pain is intolerable , As I try and dilute this through honest communication , plenty of physical and emotional love , and sometimes tough love , where it is recquired , I become lost and exhausted .

Considering we were told that Sammy-Joe would never be able to walk , talk , or live past a certain age , we are overwhelmed at his progress in everything he does , but sometimes his achievements seem a pale comparrison and insignificant when compared to a regular four year old , that finds reading easy , or counting backwards easy , and who can recite a nursery story or song with ease .

Although I would nt wish a child with an illness or disabilty on anyone , part of me wishes that it could be an experience shared and understood by everyone .Only by having a child with an illness or disability can you begin to understand the sorrow , the grief , the pain and frustration that families , parents experience , its experienced by many families whose children do not meet societys expectations .

Children with an illness and disability have such a long hard journey between achievements that they are the real cause for celebration , so with this I ask you , when a parent of a child with an illness or disability asks you to share in their life and Values your friendship enough to share it with you ,

please have enough time and patience to Understand and listen to them ,

and wish and hope that much enlightment , compassion , understanding and kindness comes their way .

please take the time to truelly hear what their aching heart has to say .
thank you again for stopping by and taking the time to read this , for this I am grateful .
Maria

Monday Jan 9th 2006 1 pm

The weekend has been and gone , it has been a difficult time for Sammy-Joe , he isnt feeling well and basically slept most of the days out , he was up only for about 5 hours each night and then complained of pain in his legs and body ,he just wanted to sleep it off , Christian and I watched some dvds to get us through the boredom , and then Joe and he went to watch an NBL game on Saturday night that the Melbourne Tigers were playing . Christian loves basketball and I was happy that Joe and he had some father son time , I passed the time cleaning wardrobes out and clearing clothes that are of no longer use to us because they are so outdated and worn , I never realised how much stuff had accumulated over time , it helps me to breathe easier now knowing that I have cleared them out and given the good ones to someone that will use them .
Sammy-Joe has grown so much that some of the clothes were still brand new with tags on them . he has tripled in size in two years , amazing stuff especially for someone with his condition .pretty much a miracle I say .
On Sunday while Sammy-Joe slept , I got to cook a roast and some stuffed capsicums so that we could have a good family dinner together , I enjoyed doing it and added passion in everything I did on Sunday , it felt like we were becoming a family again , and sometimes in our disfunctional world a bit of normality doesnt go to stray , Sammy-Joe sat with us at the dinner table and enjoyed having the four of us together for a change , usually we are all doing things seperately , not because we want to , but just because of our circumstances .Family life in the Liistro home isnt always easy , so Sunday was like a breath of fresh air for us . Joe and Christian went and shot some hoops later on at the local Basketball stadium Sammy-Joe and I spent time reading books .
I am still on a cleaning frenzy , and will start up with my bathroom now , clearing the clutter has been a good thing for me to do , its kept me busy and stopped me from annoying all of my friends lately , I have heard from some of them , I have heard from my closest friends We support each other endlessly and we try and keep intouch every other day , I love them dearly and am so happy that they know me inside out , without them the hard days would be harder . Thank you also to everyone that emails me , calls me , writes letters to me , your support is something that helps me to see things in perspective , without you all I would feel lost , so please do keep writing to us , we love hearing from you all .
The next step in cleaning now will also be my desk area , where basically I keep all of Sammy-Joes files and information , I have so many papers that I need to file , I am going to have to get myself a good filing cabinet or set of them to store all of these things , the documents are too important , they need to be stored in something other than just boxes ,, well I guess intime ,,all good things come to those who wait , I have been told , I just have to be patient , it just seems that the more time passes the more papers I add to the piles ,,lol ,, please also say a special prayer for my Friend Daniel Frezza and My Little Collin Presley .

Thursday 5th of January 2006 4.54 pm

I believe that all of our experiences , good and bad , are presented to us as an opportunity to develope a deeper understanding of who we are .Having Sammy-Joe has taught me to be strong and has taught me to learn to survive in the hardest of situations at times .

I am and have always been a survivor in the way I choose to see my life , the storm has passed and so has the heavy rains and now I can see the sun shining through the clouds , I see hope for us , the Lions club and the beautiful people in it have given me this hope , they have given us new found friendship , love , hope and comfort and much needed support and for this I am eternally grateful .

Having a child with an illness, the experience of the knowledge of the future can be painful at times , and there are moments , hours and even full days where Sammy-Joes diagnoses of TTD is my sole focus in life , for me saving grace has been having to focus on Christians life and trying to make it less restrictive for him .
Sammy-Joe and Christian have brought to us , each gifts that no one could ever buy you in the store , their perspective and outlook on life , each different , has brought to me a new way of living .
however , sometimes I have lost myself and who I am being ,,the carer , mother , nurse , daughter , mother and responsible friend , I had lost myself in being a mother and to be a nurturing mother.
I know I must nurture myself also , it is that time again when I must reestablish my relationship with myself , until my operation it had been a very long time since I spent time with myself , but having the experience of being in hospital on my own taught me to start to know who I am again.
in the last four months I have experienced so many beautiful and profound life changing experiences ,it has taught me , also to get to know myself , Today I am getting to get to know myself again , I know now , that by caring for myself , I can give my family the best of who I am , I look forward now to waking up in the mornings and looking forward to new opportunites , new ventures , I have also learnt to trust that there are good people in the world wanting to help , helping any way they know how ,helping with healing prayers , their gift and knowledge of science , their friendship , I have also learnt that things not only happen for a reason they are constantly changing to suit the needs of our situation , I have also learnt to Trust, Trust is the message I have been given time and time again , in my dreams , thoughts and through my friends words and through my heart , it has been given to me in many different ways , but this is really the first time that I am listening , Trust is an instinct that is prevalent in us all , although over time for me it had become clouded and pushed down into the depths of my heart and soul .I am and know now that I am completely at ease with all that is happening around me , I am completely at ease with understanding of how these events in my life have occurred and hold everyone that has helped us get to where we are today, in upmost respect , I am eternally grateful to you all , I am especially grateful for all the help you have been giving us for Sammy-Joe , he is what is important through all of this , he is what matters , him and Christian want to go through life sharing more time together .
Christian spent the last two hours playing with Sammy-Joe and reading books for to him , it was so sweet to see them bonding , Sammy-Joe was a little teary all day today and a bit emotional about being inside , he misses having someone to play with and considers his carers that come in for nine hours a week his friends .
Today I spoke with my good friend Robyne ,we had a good conversation about life and how difficult it truelly has been for us , she would know because she has watched us go through things , she has been my true friend and someone that has constantly inspired me to carry on , to keep going , to not give up , her encouraging and heart felt words are words that Ihave listened to always and will continue to for the rest of my life ..
Every day is a miracle and a gift for us to share .
Thank you
Maria .


Wednesday 4th Of January 2006 11.39 am

I am beginning this Journal entry with a pray , its a beautiful pray and I usually say this at least once a week , it was emailed to me recently and it reminded me of how alot of us , although different ,are on the same journey through life . we all have something and sometimes in our lives when the only person that hears us is GOD .

Just for today, Lord
I will live through the next 12 hours
and not try to tackle all of life's problems at once.

I will improve my mind. I will learn something useful.

I will learn something that requires effort, thought, and concentration.

I will be agreeable. I will look my best,
speak in well-modulated voice, be courteous and considerate.

I will not find fault with friend, relative or colleague.
I will not try to change or improve anyone other than myself.

I will have a program. I might not follow it exactly, but I will have it.

I will save myself from two enemies, hurry and indecision.

I will do a good deed and keep it secret.
If anyone finds out, it won't count.
I will do two things I don't want to do, just for exercise.

I will believe in myself. I will give my best to the world
and feel confident that the world will give its best to me.

Yesterday , Sammy-Joe seemed so happy , this cooler weather is what he really loves and he feels comfortable with it , its so hard when it is overbearingly too hot , life is so hard for him , but he goes through it all like a trooper and always wirh a big smile on his face .

Christian had his friend over yesterday and after watching dvds to 5 am , he slept most of the day ,thank goodness for holidays , teenagers , where do they find the energy to do things , I know I cant speak , because usually I dont sleep much either , because of Sammy-Joe being a moonchild , he loves to party all night long , I guess he is being a teenager also , but in a toddlerish way ,,lol,,.
Last night , I got to watch Ghost Whisperer , I love that series and have been hooked on watching it every week , I want to try and get it on DVD when and if it comes out , Brooke and I love watching it . I love speaking to Brooke every morning , she is gorgeous , we have so much in common although I am 14 years older than her , I love when she calls me MUM , it make s me feel like she is the daughter I havent had . she is so kind , gentle but yet strong because of everything she has gone through , we acquire tough skin after a while , thats what happens when you have suffered alot .

Joe has had a couple of bad days with his moods and him feeling down ,we are working at it all the time and sometimes its exhausting to keep reminding him how much he is loved , but I know its hard for him also having to accept that life isnt like everyone else s and that we have to live a life in darkness or live by night ,and I guess its harder for a dad to try accept things , I am not sure , but I think its been hard for Joe , I feel for him , but at the same time I feel for all of us , because when Joe is sad and down it affects us all .

This morning I got some good news from our case manager about something we applied for recently and I am hoping that things in 2006 will be fantastic for us , I am usually a person that wakes up happy and starts the day with a positive note , but I am also human so we do have down days , and sometimes the down days are that bad that you cannot see any light coming through .

Sammy-Joe is such an angel I love him with all my heart , when I look at him and see in his eyes , I see Jesus ., I look in his soul .

Tuesday January 3rd of January 2006 12 midday

Just something to reflect on ,


1) THE GIFT OF LISTENING...
But you must REALLY listen. No interrupting, no daydreaming, no planning
your response. Just listening.

2) THE GIFT OF AFFECTION...
Be generous with appropriate hugs, kisses, pats on the back and handholds.
Let these small actions demonstrate the love you have for family and friends.

3) THE GIFT OF LAUGHTER...
Clip cartoons. Share articles and funny stories. Your gift will say, "I love
to laugh with you."

4) THE GIFT OF A WRITTEN NOTE...
It can be a simple "Thanks for the help" note or a full sonnet. A brief,
handwritten note may be remembered for a lifetime, and may even change a life.

5) THE GIFT OF A COMPLIMENT...
A simple and sincere, "You look great in red," "You did a super job" or
"That was a wonderful meal" can make someone's day.

6) THE GIFT OF A FAVOUR...
Every day, go out of your way to do something kind.

7) THE GIFT OF SOLITUDE...
There are times when we want nothing better than to be left alone. Be
sensitive to those times and give the gift of solitude to others.

8) THE GIFT OF A CHEERFUL DISPOSITION...
The easiest way to feel good is to extend a kind word to someone, really
it's not that hard to say, "Hello" or "Thank you."







"Be kind and merciful.
Let no one ever come to you
without coming away better and happier."
-- Mother Theresa

I always try and live by this because its important to be kind , generous , and loving .






My favorite Picture of Christian , I call it ""feeling Blue ""




As far as I can tell us Human beings seem to be divided into two groups or two types of characters , the resigned , who live in quiet or in desperation , the ones that say nothing and just keep going everyday the same , day in day out , and then there are the exhausted , who exist in a restless agitation , the quiet resigned believe that we have a destiny to live and that the cosmic roll of the dice is what determines what is meant to happen to us , or that God controls all that we do , I am partly a bit of both , then their are the restless agitators or exhausted ones , which is also me , I sense there is something more , more to why there is what there is and why things are happening , more to why we are here on this earth , something more to the meaning of life , a picture is not just worth a thousand words , it is worth more than that , it is a piece to your life and when you look back at it it will give you a clue to where you are goin . hope this makes sense to you , cos its something i have been thinking about all day long.
Godbless
Maria

Picture of Joe and Sammy-Joe this evening around 6.30 pm



Carol and I on New years eve




Monday the 2nd of Jan 2006



Simone , Brooke and Me before my operation .




Happy New Year , I wish you all had a great start to 2006

already here in Australia people in NSW are being affected by Bush
fires , I hope everyone in our group from NSW s are doing ok , I
have been praying .
There are still 27 fires accross the state still burning , we have
also had record breaking tempretures here in Australia , across each
state , we finally got some cool relief here in Victoria yesterday
and today , but the week looks like we are going to have some more
warm weather coming up.

I am so happy the other day I got to speak to Kelly on the phone ,
it was so wonderful to hear her voice and I wish somehow I could
meet up with her when I go to America in June or July .

Julie and I often get to speak on the phone and I have also chatted
with Amy , I wish I could get to visit everyone when I am in the
United States , I would love to meet everyone in the TTD group and XP group , I wish there was someway of us all meeting .

Sammy-Joe has been well , the only thing that has been happening
with him lately is , he is having trouble chewing and swallowing
food now , I have noticed also he has a slight limp while walking ,
I have been trying to get him a MRI , but havent had much luck with
all public waiting system here. Sammy-Joe is still like an oversized
toddler and is trying to enjoy his life and make the best of it
living without light .

Christian is growing up fast and is now a teenager , life seems to
have changed for us with our baby , he is more moody now and
approaching teenage hood head on , he has many mood swings and some
anxieties about high school , but other than that he is still trying
to be a kid .

Joe and I are doing well , we have also hit some issues financially
and have some fears about our future , Joe seems to be a little down about it all and I have been trying to make him see the positive side of things all day , I have reminded him of how lucky we have been and grateful we should really be about how the divine intervention of beautiful people from the Lions Club has really changed our lives .
we are grateful to the Lions
Club for helping us to raise the money to get to America and for all the help they are giving us this year , without them we would not be here

cant wait to meet up with Julie and Jason .

Sammy-Joe hopefully will have a better school year this year and my
new years resolution is to try and make the best of our situation
and to be happy .

I am doing much better now and am hoping that I can get through this
year without being sick again , I have to remind myself that I am
equally as important to the dynamics of this family as everyone else
is , and that mothers do so much to keep the family together , when
we are sick the whole family suffers , so please to all the mums in
the group and to all mums that read this journal , please look after your selves
Last night we went for a drive to the city to show Sammy-Joe the city lights , he liked them , we left home around 11 pm and came home around 2 am , he loved looking at the city from the car .We also visited the Galatic Circus at the Casino which is a big games centre for kids to play video games and the claw game , Christian won some toys for his brother , Sammy-Joe sat in his wheelchair and seemed to enjoy all the noise and even some of the people , he tried to socialise with some young boys that were probably around 12 or 11 in age , it was good to see him wanting to talk to the crowd .
today he just wanted to sleep and woke up around 10 .30 am only to fall asleep after breakfast , he is wide awake right now , its 7.25 pm and he is on his room playing with his grandmother and reading some books .
God Bless and have a great New year

Maria and Family









Happy New Year to everyone , We have had a quiet start to the year , Sammy-Joe and Christian saw the sun set on 2005 and we stayed up till 4 am on the first on Jan 2006 , we then woke up around 11 am and had a bit of a clean up from the night before , the night before my mum and dad were over and so was my cousin Carol .
Everyone seemed calm and quiet , it was a scorcher of a day , the heat was so bad , I think we were pretty frustrated about the heat , actually .
Sammy-Joe tried to cope , but in the end just wanted me to wash his face , arms and neck to cool down .
Christian said he wanted to stop the heat somehow , kept turning up the evaporated cooling system , which was struggling the whole day .

As I reflect on 2005 , I think about all the new people that I have met and all the wonderful friends I have made .
I also reflect on all the friends that no longer are in our lives , I understand that all our journey through this year has been a tough one , but I also know that alot of positive and good things have come out of 2005 .
I am happy to wish everyone a million smiles and lots of happy wishes for 2006 , I hope this journal entry finds you all well ?
please say a pray for Brooke Parsons and Daniel Frezza as they are not feeling well right now.



Friday 30 th of December 2005 11.00 am ,

We had a fun night , we went to see a movie ,and we had dinner at Ceconnies in the Casino Complex , we sat outside on the southgate side ,it was so nice and peaceful , it was so nice and the city of Melbourne is so beautiful ,the lights and the city is so alive at night .

There are so many people walking around at night in the city and also going to bars , restaurants and to the Casino , its a whole new life out there .
I have been thinking alot about caring for our souls , the emotional complaints in society of our time ,complaints I hear of everyday when speaking to people ,or just even over hearing some of the conversations from being out last night or just some people that I met in the lobby while waiting for the movie ,they were so nice , but yet seemed so unhappy ,and even said they werent happy had lost their spirit this Christmas , it makes me sad a little to think that our world is being split by materialism and spiritualism , why cant we combine the two ?, people were talking about , emptiness , meaninglessness , a loss of oneself ,not knowing who they really are , a hunger to know the soul .
A soulful personality is complicated , multifaceted , outstanding , and someone that is geniune to him, or herself and to others , and shaped both in pain and pleasure ,success and failure , life lived soulfully is not without its moments of darkness and periods of feeling foolish or awkward , so I have come to the conclusion that I am a Soulful person , because I am deep,intense and think alot and have gone through alot in a short time , have survived surficed , sacrificed and am still alive ,enjoying moment to moment what my life brings to me , I enjoy the company of strangers and also enjoy good food , geniune friends and good conversation, infact I even talk in my sleep , so I would say I am deeply affected by my soul and see passion in everything that I do , therefore , I am a person with soul , and so are my friends and my family we are people with souls , we are not walking this earth in deadland or nowhere land , each day brings new beginings and new horizons , zometimes presented to us as challenges , its how we face them that makes us who we truelly are .

I want to dedicate this journal entry to all the people that I love , I love your soul and I love who you are , please keep being You , and keep helping me to build fond memories , Sammy-Joe and I and my family would not be here today if it werent for you all .
thank you
ps the movie I watched last night was outstanding and helped me to think alot about my life, it also helped me to reflect on this Journal entry what I Want to say ,, see I am a deep thinker !!!
The Movie was called ""Just Like Heaven "", Its definately a chick flick but a great one .

love ya
Maria xxxx

Thursday the 29th of December 2005 11.05 a.m


I have woken up this morning with a big headache and the shakes , I think my blood pressure is low , we are going out to dinner tonight and going to see a movie , Joe and I , we havent been on our own in a long time , my mum and my cousin are going to look after the kids for me , and hopefully Joe and I will remember how to be on our own again ,,lol ,, its funny isnt it ?,,parenting is such a great big part of us , now that the kids are growing up , we have to find ways to rediscover who we are , I am sure we will have some fun tonight .
I remember a few years back ,(yes that long ago , going out is something we dont do )
Joe and I went out for our Anniversary to Witches and Britches thearte restaurant , that was a while back , but I remember we had a good night , I hope tonight will be the same .How sad we are that we dont really live a ""normal life ""but then again what does the word ""Normal"" mean ?
I tend to use regular more than normal in my vocab , this morning I have also woken up a little sad about certain people and certain friends that have come and gone , I somehow wish I could help them to understand our situation more and so rather than leave us , they wouldve chosen to stay . I have been thinking alot about my working life friends and how different their paths are to ours , but I guess our path is very different to alot of people , living by night is pretty hard sometimes , you find yourself socially very alone .
I guess thats why I am such a deep thinker usually I am the one up with Sammy-Joe through the night , we tend to play lots of kiddy games , read books , but often he will like to just sit by me holding my hand and not talking , just thinking about things ,
Human beings were not born to be perfect , we were born to grow , to expand , to love , to create , to enjoy and to see the beauty in all things ,, including ourselves ,, our striving for perfection is a futile endeavour , a waste of time .
Even the most enlightened of us regularly trip and fall, No one is perfect , even the people that appear like they live in a perfect world have their days , I guess today is my day to be feeling far from perfect and a little sad about things .

If we learn and grow from our mistakes then they arent mistakes , if you havent made any mistakes lately, you must be doing something wrong , its human to make errors.We are told that first we sow the seeds and later we harvest , in reality , we dont usually have to wait for later , when we focus on the beauty of the present and now , each moment you spend with someone you love is beautiful , we are usually filled with a sense of gratitude , and if we focus on the now we are harvesting while we are sowing .Peace comes from knowing we have so much right now , ,, family , friends that care ,,a life ,, and opportunities for contribution to personal growth and much more , with all this knowledge , I realise that I am not a machine trying to reach a certain goal , I am a heart and I am a soul vibrantly connected to everyone and everything around me each moment of the day , if my heart aches , so does yours ,if your heart aches ,so does mine .

Life is Huge ,, Life is to be embraced ,Embrace the journey ,,,Embrace who you are ,,embrace all there is ....


Wednesday the 28TH of December 2005 , our anniversary 19 years of marriage .

We have been married 19 years today , it hasnt been all roses , but which marriage is and especially because all didnt go according to plan I guess , Once Sammy-Joe was born alot had to change in our lives and alot of our years haven been pretty much a struggle , but we have made it through and we are still together , so there must be something alive and well inside our love to keep us going .
Alot of people will look at Joe and I and see that there is something there , but others will look at us and think we arent going to make it , the truth is , yes everyday is tough , and every day is getting a little harder , but we are still trying at it and trying to make something of our lives , when we are as a family , the love that is between us is incredible , we laugh , we joke , we have so much fun , there are also the tough days , when we argue , we cry , we bicker , but hey who doesnt , the people that continue to believe their lives are perfect and try and convince of it , well my theory is that Life isnt perfect , there has to be times when you fight argue , or are unhappy , because those are the times you really reflect and see what needs to be worked at , and remember if soemthing is easy it never lasts , you need to constantly work at improving your lives and encourage each other through each and every day .

Also remember that the person that makes the first move for the kiss is the most couragious one , the person who admits he is wrong or done wrong is also the couragious one , the person who shows his feelings regardless of what the others think of him , is the most couragious one , I am proud of who we are as a family and how far we have come along the hard way . God Bless you all and Happy Birthday Connie , my sisterinlaw is turning 39 today , she is also Sammy-Joes godmother .




Happy Birthday Connie and Happy Anniversary to Us !!!








We have been Married for 19 years , we have had our rough times and even our times apart , but we have survived them and come through , Sammy-Joe is 16 years old so you can imagine how hard our times have been , but all we want to is to be a family and be happy together , we thats basically what I have always wanted , and I also wish that Sammy-Joe could be cured , and be healthy , but I know that that isnt a reality , he is surviving and is trying everything to stay here with us, he has beaten odds and shown us that you can live and survive by night .

Joe sent me ten beautiful Roses today , they are beautiful .

Yesterday we went to the beach in the afternoon , it was so hot , we needed to get out of the house , so around 6 pm we sat on Eastern Beach sands and tried to enjoy the rest of the day , it was so difficult for Sammy-Joe , he had his solar protective clothes on and he had his solar hat and sunglasses and gloves on , suncream and was pretty much covered up , but still managed to get some blisters on his skin . the UV was lower at that timeof the day , but the northerly wind made the day a little unbearable .We were happy when we got home in the airconditioning and slept with it on most of the night , today Sammy-Joe is just happy to sit in his Pyjamas and laze around , he said he doesnt want to go outside for a long time ,,lol I think he has over done it the last few days , well at least he is trying to live a normal life , well as normal as it can get for him .
Thank you to everyone that stops by and visits us , we appreciate everything that you do for us and God Bless you all
love Maria




Tuesday the 27th of December 2005
here are some of the photos of Christmas eve


opening presents



opening the presents





tuesday the 27th of December 2005 1.19 am

we had a great day yesterday , we decided to take the boys to the movies for the afternoon , Sammy-Joe hasnt been to the movies for about a year and it was great to see him excited about it , at least in the movie theatre its nice and dark and its comfortable for him , its a place he really doesnt mind being in when he is well . He isnt too great because I am sure he has an ear infection , but he is coping just with panadol at the moment every four hours , in the movie he sat so quietly and he was very involved in it , Cheaper By the Dozen 2 , he really loved it and was caught up in the whole emotion of the movie , he cried at the appropiate time and laughed at alot of the scenes , he ate popcorn and an icecream and drank his drink , he loved interacting with his brother also , he asked him some questions about the movie , it was good to see him bonding again , it was so good to see him enjoying himself . Once the movie finished we went down stairs by lift , the lights were out in the lift so we went down in total darkness , as if by chance , it was funny , anyway , he then played the Claw game with his brother in intensity for an hour , he enjoyed himself and only complained once about the bright lights , once he started to feel a bit too much light exposure we headed home , he was so good and so brave , we are all very proud of him , we got to go out as a family and everyone came home happier , Sammy-Joe was exhausted after all that and fell asleep around 9.30 pm and he is still asleep , I hope he gets to sleep all night for a change , I am looking forward to getting some sleep. Joe , Christian and I watched four episodes of Everybody Loves Raymond and also four episodes of MAD ABOUT YOU , we have had a good night laughing at how similar we are to some of the characters , its funny , our family could probably make a sitcom and it would get a lot of laughs , sometimes we are so dysfunctional its funny , Christian had a good laugh and it was great to see him laughing .
Well I am off to bed now , I have had a good couple of days with my family and have had a lot to think about , its good to reflect on our choices in life and where we are heading , but its very important to focus on the present and what we have now in the moment .
God Bless you all
I will update tomorrow , its going to be 37 degrees ,a hot one for us in Melbourne , looks like tomorrow night may be a good night to take Sammy-Joe for a walk near the ocean , probably around St Kilda way , last year we did a similar thing where we sat on the sand in the dark and just listened to the waves , he really enjoyed it .
Good night .
Maria

Monday Boxing day 26th of December 2005 11 am

Well its already over , I cant believe how quickly Christmas comes around and then disappears again , we are all full with our bellys and filled with Christmas cheer , I am a little drained and tired , the kids are still asleep , last night after going for a drive to see all the lights around Melbourne , Sammy-Joe wanted to play some more with all his new toys , yesterday we took him out around 1 pm for the first time in a long time , he coped not too bad at my Mother Inlaws , he wanted to see his new Cousin Alysha Rose that was born on the 22nd of December , my sister inlaw came out of Hospital and was at my inlaws for Lunch , so we convinced Sammy-Joe that he would be safe , we closed all the curtains and he was in his solar protective gear , and all suncreamed up , glasses on and two hats on and a jacket over the top , I feel sorry for him when its too hot cos he sweats alot now with all that gear on .
Alysha Rose is the sweetest little thing , he feel inlove with her .
After about two hours , which is a long time for Sammy-Joe ,he decided he had had too much light exposure and we set off home again , he fell asleep in my bed for about four hours and then around 10 pm we went out to drive around and look at all the Christmas lights , all the houses lit up , we were sad about our house not having the lights that we wanted , but enjoyed seeing all the lights and decorations on the other homes.

we got home around midnight , after eating chocolates ,and looking at all the lights we were exhausted.



Saturday the 24 th December Christmas EVE 8.59 am morning

Good Morning to everyone , its Christmas Eve here in Australia , its a nice warm Saturday morning and Sammy-Joe woke up this morning at the crack of dawn at 5 am , he didnt sleep all day yesterday as Santa came early this year and brought him his presents early ,, he was very excited , he is playing with his toys now as we speak.
I am a little sad today because Sammy-Joe had another tempreture yesterday and lost more hair , all his beautiful hair has broken off , this is one of the Trichothiodystrophy characteristics , most children with TTD have no hair or brittle hair that breaks off with a fever or when they are exposed to light .
You will see his hair in the photo that I took this morning, he was playing the wiggles game on the computer , usually these days we have to have a roster who is going to be on the computer , because the kids now seem to be on it most of the time .

I have been looking through some school photos of Sammy-Joe which I will scan and put on the here once i HAVE time to scan them , next year I am hoping that Sammy-Joe will get to attend more school , he hasnt attended school for six months .
He really needs to socialise a bit more and even if he gets to go once a week , at least that is more than what he is doing now .




Sammy-Joe on the computer this morning , you can really see how sparse his hair is now .

I will add more photos through out the day .but incase I dont have a chance , please remember we are thinking of you and please do have a merry Christmas from all of us here in the Liistro House , especially from Sammy-Joe , he loves Christmas , its his favorite time of year , he loves all the houses that he sees from the car window at night when we drive around , we wish that our house would ve been lit up also on the outside , Joe is still working on it , it might be done by New Years eve , well I guess its better late than never .




Merry Christmas everyone !!

I hope everyone is doing well , thank you for stopping by .
Maria


Thursday 22nd of December 2005 6 .18 pm
Hello everyone ,
My beautiful Brooke has been a constant friend , a beautiful source of energy and light , an inspiration to me , she gives me so much strength , love and hope , I have so much love for her , she is just like a daughter to me . she speaks to me and understand s me totally , she knows how I feel and what I am thinking . I just wanted to thank her for being here for me and being my strength ., thank you beautiful Brooke , I wish I could change the world for you and make all your wishes come true .

Vital to quality of life is the ability to work together as one You can want to do the right things in life and have all the right intentions and do it even for all the right reasons , but if you dont apply the right principles to what you intend to do , you can still hit a brick wall , and sometimes its mainly who you know and not what you know , life is like this for many people , but the main ingredient is to have faith .Time can also be a limited resource , but we arent , we are all here to give to one another , somehow and someway , if people do not take the time to do things for each other then what hope have we got in this world ?There is no way we can escape accountability , we all do make a difference ,, one way or another , we all make a difference in this world , we are all responsible for the impact on our lives , Personel responsibilty is a valid and powerful principle in our lives , we all must take responsibilty of our own lives , but we also need to allow the outstretched hands of the warmth of a friend , giving you a hand , allow this today and for the rest of the year as the spirit of Christmas needs to live on .
And please remember that Quality of life depends on what happens in the space and time between stimulas and response .Listening to others advice warms your heart and puts things into perspective and living by conscience becomes the fundamental way of the heart .
I promised Sammy-Joe and Christian today that no matter how hard it gets for us I will never give up , I will keep going I will move forward to help them achieve their potentials in what ever they decide to do for their lives and to wherever they want to reach The reality is that what ever they choose to be , the same person who gets up , showers and eats breakfast in the morning is also the person who interacts with people all day at the office , , makes presentations to the board ,coaches little athletics , or under fourteen basketsball teams , cleans out garage and goes to church , whatever we are in this life we all of us bring to something to this world and make a difference .The important thing is to keep trying in life and putting first things first is an issue at the very heart of life , so please live in the moment and enjoy and be happy .



Wednesday, December 21, 2005


Dear Friends,

Christmas, ‘tis the season to be jolly’. Really? I have never understood this saying because I find Christmas the season to show your true emotions. I spend Christmas asking a lot of questions and find it a time when you seen people hurt over torn families and torn friendships. Often a time that is suppose to happy and memorable is full of tears and hurt. I personally spend Christmas reflecting on the year, what I have achieved and what I could have done better. Although I smile on the outside, I often cry on the inside, mourning for loss of my limb (right arm). I have overcome many obstacles and I do my best to not let my lifeless right arm stand in the way of all I want to achieve however their will always be apart of me that’s sadden for the loss of my arm etc. I spoke to my Mum (Maria) this morning and we spoke about relatives showing up after a period of time and this is our conclusion:

You think they’re just tears I am crying, but they’re not. My tears are the pieces of me that I shed; they’re pieces that I lose along the way, I cry them for you – because of you. I cry because it is the only way I know how to say what I need to. It is impossible to have words when one cannot speak, let alone know what to say in order to express one’s feelings and have them understood.

Do you hear the pain in my tears? Do you even listen anymore? The pain has become so frequent that I am not sure if you hear it but then just close your ears instead. You think that maybe if you aren’t listening I will stop screaming through my silence. You think I am quiet? Really? Because I have more to say than time can allow for. I say what I know and what I know you will understand. But it is through the quiet that I tell you my true thoughts – expose the most inner core of my being. It is through the silent sobs of my mourning soul that I give you a hint as to the sadness inside of me. Do I not share enough with you already that you think there is more? You think there are things I keep from you? No. It is all there. It lies before your eyes, deep in my own, and it lingers in the slow, methodical breaths that I breathe when that is all I can do – just breathe and nothing more.

I keep nothing from you. It is you who chooses to hear what you do, and it is you who refuses to understand what you don’t. Who am I in this moment? You can’t expect me to give you all of me when I don’t even know what that means. I am a young women. In my head I am a child. I often see things in ways others don’t and I am amused by things that others have ceased to take pleasure in. I am a frail girl, insecure and immature in the ways that many outgrow. All I can do is speak through silence and through tears and hope those listening will recognise and understand what each cry or unspoken word means. Sadly not many people do, and if they get close, I confuse them by speaking words that



can alter the true meaning of the cry in my heart. So no, it’s not just tears that I cry, I am crying me and it’s all over you.

So, here is to 2006. For success, happiness, love and friendship

All our love Brooke and Maria xxx

Wednesday the 21 st of December 2005

Hello Everyone ,
Sammy-Joe is asleep again and its 10 42 am , he went to sleep at five am last night and woke up around 8.30 am , so he is all over the place again , his days are all mixed up .

I had visitors all day and caught up with cousins and friends that I havent seen for over ten years . I am amazed that really personalities and characters dont change that much we just get older , our spirits are still young and maybe a little less vulnerable , but essentially the person inside is still the same .
Sammy-Joe and Christian enjoyed their company and Joe was overwhelmed by the amount of people that we have had visit us lately .
I havent had time at all to buy presents yet and am a little saddened that I havent done the Chrissy Shopping yet , boy how slack have I been this year .
Anyway , I will take photos of everything soon and add them to here so there will be lots of pictures to look at .
I am always thinking up ideas to improve the website also , seeing as we have all summer to spend indoors , I am hoping I can buy some solar protective clothing for Sammy-Joe this week as I would like him to try and venture outside in the early evening when the sun is starting to go down .this is the time the UV is low , early morning and late afternoon around 7 pm , I would like him to see a little more of the day than he does and he also needs to get his body moving around more , life has been tough for all of us the last month seeing as I have been so sick , life stopped for a while , I am looking forward to starting life again .

Just a thought for the day
...........
Guide me , perfect Angel , to the place where my spirit can soar free from all earthly limitations
No evil will overcome you when you walk with your guardian Angel .

have a great day
Maria

Tuesday the 20th of December 2005

Wow hasnt the time flown and gotten away from us all , I cannot believe how quickly time flies when you are older , maybe because I am forty years old now , I am sooo old ,,lol ,, it feels like it is escaping me always .
There are still so many things I want to achieve when it comes to raising awareness on this illness , so many times I would love to just write to every hospital again around the world to see if they have come up with any advancements , I am in constant contact with many doctors overseas and am pretty much to date with most of the current research , am extremely happy that I have made so many achievements and progresses since Sammmy-Joes diagnoses , but still feel that I need to do more , I am thinking of ways constantly to try and raise awareness and am always coming up with ideas , I need help though to put them into action , so after Christmas and into the New Year , I will start on something which I thought was important to do before Jan 2006 ENDS ,I would also like to get this done before we fly over to America to see Doctors for Sammy-Joe , I believe it is important that I raise awareness in everything that I do .
I am so grateful this year for all the help , love and support I have recieved from everyone , everyone that has prayed , written to me , emailed , sent happy mail and any kind of care you have shown me , has really helped me through all of my days , especially all the guest book entries , and prayers , please continue to visit us , and please do also write to us , Sammy-Joe loves receiving Happy Mail .
I would like to wish you all a wonderful Christmas and a fantastic New year , I LOOK forward to keeping in touch with you all and hearing about your holiday season , one thing Sammy-Joe remembers about December in America is the Snow , he loved it !! , he loved Playing in it and seeing it fall from the sky , he loved making Christmas Angels and snow men , please make some for him whenever you can , and think of him and his happy face .
love and kisses
Maria


Monday the 19th of December at 10 .30 am

I have had a pretty stressful couple of days at home , trying to clean up and get things ready for Christmas , because I havent been well I have done No Christmas present shopping , I have been pretty emotional also , I am not sure why , it could be because at times I feel so misunderstood by people around me , I am so deep and intense I guess I can scare people away from me ,my intentions are always good and for the good of others , but I guess in this day and age there really isnt that much left in the world , there is only a hand full of us that think the same as me .
Life in the Liistro House has been hard ,it isnt always about Love in our House , sometimes there are other emotions involved , like anger , frustrations , stress , anxiety ,and sometimes loneliness, each of us experiencing our own.
Joe and Christian went to see King Kong last night , we always have to do things on our own seperately ,its so hard , Sammy-Joe and we were on our own .

I am grateful for everything in my life , because I have learnt from it all , I have no regrets in my life .

Maria



Saturday, December 17, 2005


Hello everyone , I hope this journal entry finds you all well ?
I am up and about again and today was the first time in a long time that I have felt a little better since my surgery , its been a long three weeks for everyone and everyone has done a great job at keeping things going in the Liistro household .

Christian had an outstanding day at basketball , what a star he scored 16 points in less than thirty minutes , I watched him enjoy himself today , he hasnt been happy lately , but today was the first time he actually held his head up high and played with passion again , he loves his basketball and wants to go far , this is what he wants to do and we as his parents will support him with everything he wants to do .

Sammy-Joe has been awake all day long today , the first time in a long time , he has played on the computer , sang songs , destroyed his room , by throwing his toys around and all his books ,he has only limited activities and we are started to feel deeply sad about this , because he is very housebound and really doesnt get much to do during the day .
We have so many dreams for him , we wished we could fulfill his dream of having a indoor playground , he really needs to be doing more activities , like any other child does , he cant get to run , or jump in a large area , only sometimes at nighttime ,lately he has only been outside once at night this week. Joe is getting very depressed about all of this and it is putting a strain on our relationship .He doesnt mean to be , but at times he is very frustrated , about our situation . He said that everymorning when he wakes up , he wishes that his boy could have a normal life and all the things that Sammy-Joe is missing out on could come real to him , but when the day begins it is always hard and strenuous , he is pretty down right now .

I am also finding the beginning of summer hard and difficult and the fact that I have been so unwell has made me sad also , the last couple of months have been an emotional rollercoaster ride , with Joys , saddness , frustrations and anxiety at its peak , I know that families with children with an illness will be reading this and relating to me and understanding exactly what I am saying .
I wish and pray that understanding will come our way from all of our friends and families , please pray for us as we struggle through every hard day , and survive everything that comes our way .

please do sign our guest book and please remember , even though I dont often get to sign or email back , I am always praying for you all .

We are grateful for everything that every caring friend does for us , for every thought, pray ,good advice ,and all the help that is given to us , I understand that Happiness cannot just happen over night , it is a process of change in your thought pattern and events that can lead you to be and feel happy .Lets not Dwell or hold on to the past , lets use it only to demonstrate or illustrate an example or to make a point , then leave it behind you , nothing really matters except what happens in the here and now and what you do in this instant time ,from this moment on wards you can be an entirely different person , with a changed thought pattern, filled with love , understanding , ready with out stretched hands uplifted and positive , welcoming to new ideas and changes , accepting what has happened and positive towards every action ,thought or deed . I know that happiness can sometimes come at a price , but I also know it is completely free to all of us if we only looked at things differently.

love and hugs
Maria

Thursday, December 15, 2005 7:45 PM CST

Hi all,

Its Brooke here! Mum (Maria) is feeling much better however didn't get around to updating her journal last night. I spoke to her late yesterday afternoon and told her if she didn't get around to it, I would update it this morning. I spoke to Mum who reassures me and all of you that she is feeling better.

Mum saw the surgeon who was happy with Mum's progress. Her left arm is still a little swallon but she is on the mend. Mum has been advised though by the surgeon to not over do it and she still feel a bit average for two more weeks or so.

As we all know, Mum can't really keep still for too long so last night Mum and Dad (Joe) put up their Christmas tree which is a sign that Christmas is comming for them. When I rang Mum this morning Sammy Joe was so very excited he got on the phone and told me that they have their christmas tree up. I was so excited to just hear his beautiful voice. Mum said "I will put photoes of Sammy Joe and the Christmas tress on the page very soon.)

Mum also told me that she received mail from Julie and Colin. Both, Sammy Joe and Christian received gifts. Thanks so much for your kind thoughts and gifts, the boys love them. Sammy Joe received Nemo pillow case which is already on his pillow and a book... You sure know what Sammy Joe likes! Christian received a Lakers Jersy, even though its a little small he loves it so on behalf of Mum and the boys Thank you so very much.

Well, thats about all I have for now...

Talk soon,

Brooke and Maria xxx

Wednesday December 14th 2005 6.30 pm

Graduation is here , Christian is gone and we will be there at 7 pm



James , Harley Christian all snazzy in there suit .

Christian has been so excited for tonight , I cant wait to see them all I will add more photos tonight , I am so proud of my young man ,he looks beautiful !!
Brooke has done such an amazing Job on all my updates , today is the first day I am up and about and doing things , life is hard when you are flat on your back , at least now I can walk around , I had the occassional throw up today , I think its all the tablets , I am going to the doctors tomorrow , I will update later on
God Bless you


Tuesday, December 13, 2005 4:24 AM CST


Good evening one and all,

How are you? I hope this finds you well and happy. Its Brooke here again writing this journal entry on behalf of Mum (Maria). Mum is feeling better slowly however I have told her that it is important that she rests so I will continue to update for the next couple of entries at least.

Mum had a fever, this morning it was at 37.8 so its slowly comming down which is good and it finally means that the antibiotics are working. Mum was ment to see the surgeon today, however they changed the appointment to Thursday as Mum's fever is comming down. Mum is still in pain but is feeling better every day. You know what surprises me, regardless of how Mum is feeling she is always laughing on the phone at me.

Sammy Joe is behaving and copeing very well with Mum being not to well at the moment. Today Sammy Joe slept from 10 am - 2pm so he is doing ok. Still cheeky as Mum reminds him that when she is well she will not let him get away with as much as he has been. I personally always get a big smile on my face when I hear him laugh or being him. Wilst Mum is sick Sammy Joe has had his Nonna looking after him, she is so caring, so loving and so very supportive.

Christian is graduating from Primary school tomorrow night so that is very exciting and he looks "beautiful" in his suit. Well done, Christian on getting this far in your schooling. Mum and Joe, congratulations on bringing up two beautiful children.

When I spoke to Mum today, I read her journal entry from yesterday and her guestbook entries. Mum said her entries were beautiful so from the bottom of our hearts, thank you and keep them comming at this very important time of year. I also want to say thank you for the notes of encouragement regarding the work I am doing on Mum's journal. Mum and I spoke about our journals the other day, I am currently experiencing problems writing mine, I hope to update it from work tomorrow. However, Mum says, "I do a beautiful job on her journal entries" and I explained I find it easy to write her journal entries than to write my own... I think its easier when your looking on rather than living it. Well, I hope Mum is not biased and I hope her journal entry is easy and a pleasure to read. Keep those much needed messages comming.

Finally, Mum spoke to me today about feeling sad. I personally know that its easy to became sad when you don't feel well, Mum said "I am sad because I have no christmas tree up and no lights on the house yet". Mum and I always catch up for a picnic on the front lawn of her house in front of the lights and I promise you Mum we will still do that before Christmas.

So Christian have a fantastic time tomorrow, enjoy every moment of it and be proud... because I know we are all very proud of you!

Newsflash: Just spoke to Mum, , its 9:55pm and she asked me to put the following in from her so here goes, "My heart won't let me turn my back on anyone that needs me and everytime I help someone like Daniel, Dylan, Brooke, Anthony and all the families with sick kids I do it in honour of my son Sammy Joe. My Aunty Franca, the one in the wheelchair before she died made me promise that I would never turn my back on the sick because i am special, but I know I can't do it alone, you know all my secrets. I don't feel i'll ever feel like this ever again. I need you to help me make all this happen in this life time and believe in me, because you are the first person that has believed in me regardless of how intense I am. I love all my friends and will always support my friends and families in sickness and in health. I love MY BROOKE and consider her family, I love all my families and everyone of my kids..."

Take Care,

Maria and Brooke xoxoxo

Monday, December 12, 2005 3:11 AM CST

Hello, its Brooke here again, reporting on behalf of Mum for the day. If you have been reading here journal you would be aware that she has been feeling average at the moment and I have steped in her place to attempt her journal entries. I spoke to Mum this morning who says "I feel I am getting better, my left arm is swallon. I am still on my antibiotics!" I can reassure everyone that Mum is slowly feeling better, she is remaining calm and relaxed. Mum's Mum has been there every minute to help care for Mum (Maria) and Sammy Joe. She is outstanding, never complains and means the world to her daughter! I can simply understand why as an outsider looking in.

Joes went shopping with Christian yesterday and brought Christian his graduation suit. Joe came home exhuasted, it was his first time shopping for clothes with Christian and I get the feeling that although it was tireing it would have been extremely rewarding. Christian is growing so fast, turning into a young man and on Wednesday he will graduate from Primary School. Christian, I know I and your parents ain't the only ones, so many people are extremely proud of you. I admire you for all your achievements and successes! Its your admiration, courage and friendship that has turned you into the beautiful young man that you are. So buddy, hold your head high on wednesday night and know that you have done us all proud-

This morning when I rang Mum we spoke about Sammy Joe, as per usual however today we spoke about how is behaviour has changed whilst his Mum has been sick. Mum described Sammy Joe at the moment as " Sammy Joe is being cheeky. Last night I laid down with him in bed and told him when I was better he wouldn't get away with the behaviourshe is at the moment". Sammy Joe loves his Mum and Nonna however realises that he can get away with a bit more when Nonna is looking after him. I think Sammy Joe is smart and like all children knows how to play people.

Whilst talking to Mum this morning we spoke about Christmas and what it means to us. We agreed that christmas is important, it's the birth of Jesus and its the gift of love and friendship. Christmas isn't about Gifts and being spoilt its all about sharing time with your loved ones and your friends over a meal and drink! So, what does Christmas mean to you?

Thanks for all your messages, prayers and kind thoughts whilst Mum isn't feeling to great. Every day I read them to her and I know they mean everything to her so please keep them comming for both Mum and Sammy Joe.

Sweet Dreams,

Brooke xoxoxo

Sunday, December 11, 2005 2:19 AM CST

To all our wonderful family and friends,

Its Brooke here again! Mum is feeling ok, rather tired from all thte pain killers and antibiotics so I thought I would update Sammy Joes journal for Mum.

Now, down to some news... Mum is feeling average at the moment as we all now but she never ceases to amaze me with her kind will and her abundance of love for everyone. Mum is currently on medication to help heal the infection and to bring down her fever hopefully in a day or two she will be feeling heaps better. Mum puts her whole heart and soul into everything she does and I feel a huge part of that come from her upbringing as a child. The two outstanding people who brought her into this world... her parents have shaped Mum to be the loveable and admirable person that she is. Mum messaged me this morning and asked me to put the following in her journal
" My Mum and Dad have been wonderful, supportive, every minute at my bec 'n' call and not once have they complained" Mum and the family truley appreciate everything that they have done for them.

As we all know, Mum lives for her boys and I know they live for her. Sammy Joe was not that long ago able to cope with many people all at once in the house of love however whilst Mum has been recovering from her surgery he has been a true "hero" and has coped well with numerous people at the house of love at once. Like Mum, Sammy Joe always holds his head up high and faces each challenge with his head held high. So congratulations Sammy Joe on being a real trooper, you are one of a very special group with only a few recipients! Christian has been worried about Mum too and as he faces adolescents he has said a worrying comment to Mum, "Your not allowed to die!" When Mum told me this on the phone today I told her the same thing but I say to Christian not to be so worried, there are so many people who are helping your Mum. God has her hear on earth as an astonishing angel helping so many, this earth wouldn't be a glorious place without her. I personally know Mum isn't going anywhere because we have made a promise to each other that in years to come, when we have grey hairs and need Nanna naps we will be sitting in the recliners laughing and recalling the good old times. So buddy, don't stress about Mum and remember you can call me anytime as you and me are friends for life so keep your chin up and smile as the family and I have many more fun times ahead.

Now, I wanted to write personally about our "super trooper". I know I have told you this before, Mum is a real trooper but I need to give you the latest update on even a real trooper. "A real trooper" is a person who soldiers on but even a real trooper can be emotional, often people forget that Mum is a human as she copes so well in her amazing life. However I am here to tell you, that even Mum is not a machine and that Mum can and has been emotional. Often people can't understand or cope with the emotions of other so well but I believe it is healthy for even super troopers to cry and be emotional. I feel those times that we cry helps us realise how good it is too laugh. I know from personal experiences not everyone can stand a person being emotional but I say if you ca't stand being emotional who can you stand being emotional?. A real friend is someone who accept you for the whole you, the emotional you, the hilarious you, the unsure you and the comedian you. That is another reason why Mum and I have an unbreakable bond, we can be honest with each other, very open and emotional with each other comfortably knowing that at the end of the day we will still be there for each other. So I guess I wanted to say, that even the most toughest people who may seem like a machine with a really strong exterior could still be an emotional person on the inside. Mum can work herself like a machine but I feel its Mums compassion, love and gentle care that makes Mum the person that she is. Mum if your reading this, "I am glad your not a machine! I love you and our friendship for everything that it is."

Sleep well and talk tomorrow,

Brooke xoxoxo

Saturday, December 10, 2005 6:37 AM CST

Hello everyone,

This is Brooke Parsons here. I am writing this journal entry for Maria (who I so so very fondly call Mum) as she is not feeling the best at the moment.

As you may be aware Mum had surgery under two weeks ago and whilst she spent time in Bellbird Private Hospital I kept everyone informed via Sammy Joes journal. Mum has been back home, int he house of love for a week now however she is not feeling the best, she has an infection and is running a fever so tonight when I messaged her sweet dreams I told her I would update her journal to let everyone know. So there you go, I know Mum will be back writing her journal in no time but until then you will hear from me.

Can I let you in on a secret? Anyone who knows Mum and the family will understand Mum just like I do but Mum can't slow down, she works tirelessly and hard for her loved ones. I recall recently when she was in hospital I would call her daily and even whilst she was in hospital she was thinking about everyone else but herself. When it came to myself, well she had thought many wonderful and glorious plans. I love Mum dearly however sometimes I think she just needs to look out for her because if she doesn't look out for herself how is she going to look after everyone, including people like me who call her Mum! Even though I have said this I really do understand how hard it is to slow down and like Mum every opportunity I get I am always overwhelming her with questions about everybody and everyone. Mum has said many wise, wonderful and encourageing comments to me however one that I will never forget is the one she told me on the phone recently, "Your a trooper who just keeps soldiering on!" So as Mum prepared for surgery I told her exactly the same thing!

Mum truley is an amazing person, who truley goes about daily life without a hesitation, without complaining, cops every hurdle on the chin, holds her head up high and gets through every day. Mum has had an outstanding amount of love, care, support and friendship extended to her by her immediate family, Melbourne Markets Lions Club and friends. I know she couldn't have got through this procedure without any of it however I do feel it has been a true eye opener to everyone around her as they try to cope with the busy, hectic yet rewarding life Mum leads. There are not enough words to describe Mum and what she means to so many! Mum and I have such a strong friendship for so many reasons and I have been lucky enough to have them in my life... The friendship we share will be with us for life, its unbreakable and its like a ring. It has no start, nor no end, the ring of friendship brings a special thing, an unbreakable bond till the very end!

Please remember to stop by Sammy Joes Guestbook and leave Sammy Joe and Mum a message so they know you have stopped by, I know personally that would put a huge smile on both their faces.

Big hugs,

Brooke xoxoxo

Thursday the 8th of December 2005

Today I spent the morning in an important meeting , meetings are sometimes long and will go on for a long time and sometimes the outcomes are not always exactly how we imagined it to be .

I also spent the afternoon in the doctors surgery , I have an infection and am now on antibiotics for it , I have been told I must REST , but I m not sure I know the proper meaning of the word , I have nt rested in 16 years , my body and mind doesnt know how to , the other thing I do quite naturally is GIVE and also I Worry , so if I could change slightly in some of these maybe the Rest part will happen , but I know I am stubborn and somehow I think its going to take some time .
I am also a person who analyses everything , anything that is happening around me or concerning me and my family or friends I will think and think continiously about until I can come up with a solution , I guess this is the part of me which has helped come up with solutions for Sammy-Joe all these years , so I guess that it can be a good part of me , the other thing I think that I continiously do is read , I love to read and absorb words , I am a person that loves the english language and I absolutely have passion in words , so what people say and how they say it is very important to me .The expression of words is a big part of my life and days , The written word and verbal word can sometimes vary , but the intention behind the words is what counts .
I also love to be surrounded by books , if I were to live in the library I know I would be in my element .

Sammy-Joe , I know if he wasnt affected so much by his illness would be the same as me , at times I see him looking at his books endlessly and he loves for you to read everything to him , he also loves looking at people and really thinking about what they have said , if you say something a certain way and he gets affected by it , he wont speak to you for days , he is very sensitive , he will demonstrate his feelings through his actions , I am similar , if someone says something to me in a nasty or condascending way I will firstly ask , why? was that said and what was meant by it ?, and also try and work out the intention behind it , at times I guess this can be annoying or frustrating to my friends and family , but those who truelly love me know what I am like , and accept me for ME .

I know also I am not a person who gives up easily , inside I may be hurting , but I know that when I had finally reached a point of where I thought I might quit , I found myself changed all at once , In my soul , until I reach that moment its in distress . and then I suddenly feel like a profound inner peace comes over me because Ihave finally worked up a solution to a problem and then I apply myself diligently to do whatever it takes to bring the solution forward and try and make things change , but I also know that things or people cannot change unless they want to themselves .

Todays Journal entry may not make much sense to you but to some of you it may , I just want to let you all know and remind you , no matter how hard it gets in life there is always some kind of answer or solution , it may not be what you expected it to be , but there is always a way to change things . please also remember anything that is big enough to occupy your heart and mind is also big enough to hang a prayer on , so please do not forget to include God into your plans and ask him also to give you some answers .

Thank you to you all that take the time everyday to read my journal and to those of you that prayer endlessly for my family and my Sammy-Joe , I love to hear from you all so please leave a message in the guest book so that Iknow you have been here .

Sammy-Joe isnt too well still , and his hair is all broken off now , Christian has been growing so tall lately , he is a giant these days , I will have to take some new photos to add to the webpage soon , so you can see what I am talking about .
My beautiful Brooke is doing Ok , but please do visit her and pray for her everyday , I love her dearly and she is a big part of my life .
Thank you for visiting .
Maria

Wednesday the 7th of December 2005


Thank you to everyone that has left messages , called and sent cards to us , and thank you for all your prayers , thank you for checking in on us daily , we appreciate everything you have done and also we are very grateful for all your kindness .

Sammy-Joe slept most of the day today and wanted to play at night , there isnt enough darkness in the world to extinguish a bright shining candle like Sammy-Joe , he wants to play at night and is still very much awake now .
I am meant to be resting as I am not well , I think I have an infection , today I went to see the surgeon , my good friend Thomas drove me there , and Nancy was there to greet us , but the surgeon wasnt around he had gone to do some other hospital visits and so his nurses had a look at what was happening , I am quite swollen and sore and have a slight temp , so I am guessing I have an infection , I need to rest , but that is a word I have never really understood in my vocabulary , AND I am positive that I am not alone in this , most mums I know are like me , I ,anyway have always been a little stubborn when it comes to trying to rest , I know I have to because it isnt going to do me any good if I dont ,I dont want to end up in hospital again .

Christian had basketball training tonight and when he got home he was talking to me about voilence and things that are happening in the world today , he has been particularly concerned for people that live or have lived in war zone countries , he has constantly asked me about Moira Kelly s kids and has asked if we could visit them oneday , I have to try and arrange it I am sure that he would love to meet the kids , they are superb children with outstanding hearts and souls and if anything , Christian will gain alot by being their friend.
He will not only learn to be humble but he will see that life isnt always as perfect as some people make it , he already has first hand experience in this I know , because of our own situation , but I really think it would do him the world of good to learn from other children that are actually survivors of a tragedy them self.
Its easy to become disheartened by the constant stream of tragedy and violence that gets thrown into our lives by the six oclock news every night , but we must never lose sight of the fact that many dedicated people and organisations , such as the Melbourne Markets Lions Club are working constantly to take away suffering . so I must remind us all , next time it all seems too much to bear and every day seems a struggle , focus on the good being done by these wonderful people .I know that great opportunities come to us that make the most of small ones , but I believe this one wonderful opportunity I have had with the Lions club , is going to be something that will live inside me forever , today I told someone that inside all the hurt that lives inside me is now sitting a torch lit up with hope , I would always say to people how can you hurt something that is already hurting , but tonight I know that some of the hurt in my soul is disappearing and some of all the insecurities I have felt are starting to disappear also ,I am not saying they are completely gone ,but they are starting to go slowly.
I know we make our livings and our life by what we are handed out and the way we behave with what we are handed is also as important , but what we give out to the world is more important , I believe and know I am one person , but I will not refuse to give up , if I can give and do something to make a difference to another person , and there is no better exercise for our hearts than to reach down and lift a person up , a person that has lost all hope ,I have found that by being there for my friends has not only given me enormous rewards in the gift of love and friendship , but it has also helped me to smile .I would love to be able to change many situations that seem too despairing for my friends to cope with , but I know just by being there I have already changed something in their hearts ,I have added support courage and strength ,please pray for us tomorrow as we help a friend in need .
keep all my friends in your prayers and please say a prayer for each other and for yourself .
The greatest tools to keep in mind when trying to find happiness in life are you must remember you need something to do ,something to love and something to hope for .

Good night and sweet dreams my beautiful friends of Sammy-Joe .
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


Tuesday the 6th of December 2005


Dear everyone ,
Today has been a hectic day , firstly it was Christians orientation day and I went over to meet everyone at the school , Craigieburn Secondary College is a great school , what I have seen so far , and all the staff are all so friendly , I am sure Christian is going to enjoy high school , he is very happy today , Uncle Vince and Aunty Kathy helped us out to pay for his books and uniform so he is extremely happy .



Thank you Uncle Vince and Aunty Kathy you are the greatest !!



I am going to the surgeon again tomorrow as I think I may have an infection , I am in a little bit of pain right now , I am trying hard not to do too much and have had the help of my mum , dad , father inlaw and mother inlaw , so I am pretty lucky I have them to help me , I wish I could get to heal quicker as I am still trying not to do too much , but somehow its not working , I keep moving about too much .

I have heard from Daniel , the surgery went well and the doctor got most of the tumour on the left side , Daniel is already out of intensive care and in a ward bed , I will call tomorrow to see how he is going , His mum Lena is extremely happy , but also very tired the surgery was 8 hours and Lena was very worried , I love you Lena , Daniel and Patrick and I hope that Daniel will be home soon .
please continue to pray from my dear friends .
take care everyone and remember
The best and most beautiful things in this world cannot be seen or even touched , they must be felt with the heart .


Monday the 5th of December 2005


Hello everyone , I am still sore and little bruised , but today I thought I would give my beautiful Brooke a break, she hasnt been feeling well herself as she is trying to recover from a head cold and sore throut , I love you beautiful Brooke , you have done a wonderful job on my journal ,I am very proud of you and Iknow one day you will get to write your novel .
I have lots of faith in you
please everyone visit Brooke , just to get to know her and see how remarkable she is , she is truelly amazing !!

http://www.caringbridge.org/visit/brookeparsons

Today was an ok kind of day , after a pretty sore weekend of trying to recover , I went to see the surgeon to remove my stitches , I am not sure whats worse because I think now I have more soreness , I have bandages still on as it is still quite tender and needs another two weeks at least to heal .
I am so grateful to the Lions Club , Nancy and all the members ,because they have saved my life ,especially ,Pina and Tony , Ross and Sandra Thomas and Julie , Uncle Vince and Aunty Kathy and Nancy and Joe , and many others if it werent for them I would still be on the public waiting list at the hospital and by six months time I am sure that tiny cancer cell would have spread to be all over me , I am so happy and so grateful to them .

Today I have been feeling a little sad for all the families that go through watching their lives tumble and twist and turn because of illness , or lack of money or funds , I am also a little frustrated because Life for those of us that have to watch others go through struggle and pain everyday is hard , I know that life has had its many positives lately with the help of the Melbourne Markets Lions club , but I also know reality , and the reality is that families like ours struggle everyday , every morning when we wake up we have to face the day ahead and usually its pretty much the same , its hard and its enduring with lots of hardship , but we also need the encouragement , love , care and friendship of others to keep us moving forward , true friends are the ones that are with you through thick and through thin , the hard times are the ones that matter the most , in these recent weeks , I can see how much love and strength and suppport I have had from people all around me , I just wish ,pray and hope that these people will continue to be with us for a long time , we are afraid to be left on our own again , for many weeks and years we have been on our own and its been quite difficult and despairing to live in the dark and also feel completely on your own .
I now know I have many friends to support us through these very hard times .
kindness begets kindness and these beautiful kind hearted people have shown me the way to a new life , I would like them to know that in our days of watching Sammy-Joe struggle everyday to be happy in the same house the same room and the same walls , sometimes it gets too hard and all I want to do is cry , I know there is hope , I just pray that I have the strength to carry on and continue to see the hope in everything that is happening around us .
Sammy-Joe hasnt been well and suddenly has lost a whole lot of hair ,I am very sad about this situation as I am not sure whats happened? he hasnt had light exposure and he hasnt been outside ,so I am guessing its something to do with his blood , so amongst all of my happiness I still am surrounded by the doubt of the unknown future for my beautiful boy .

please pray for us and please pray for Daniel Frezza , he has had his surgery and is in intensive care right now , please pray for his mum Lena , please pray for her to have the strength and hope to carry on ,as a mother I know the pain she is going through watching her boy in recovery , it is the hardest thing to do is to watch your child suffer continiously , please pray that she and Daniel come home soon to be with Patrick and also pray for Patrick ,( cos I know what Christian goes through watching Sammy-Joe suffer at times )and he must go through the same emotions being the brother to Daniel .
please also pray for Dylan Hartung and for Brooke Parsons , please pray for Anthony , my friend Carmela s boy . Pray for Julie and Collin Presley
please please pray for everyone that you know that has to go through every day the hard way , pray for some peace in their hearts and in the hearts of their loved ones .

''An Optimist is the human personification of spring ''

The best bridge between despair and hope is a good nights sleep , so I am off to bed now , sweet dreams to everyone that I love and please remember that Love is the real gift you can give someone everyday .


Saturday, December 3, 2005 4:28 AM CST

This note is sent with love from Maria, aka Mum.

To everyone,

Hello, how are you? Today has been day 1 of recovery from Home and due to resting I have Brooke writing this for me. Today life has been hectic at home with loved ones surrounding me the whole time, doing almost everything for me and making sure I behave and don't do too much! The hardest challenge has probably been not being able to hug and wrestle Sammy Joe. Sammy Joe loves his cuddles but I need to be careful of the surgery I have had. I am fortunate to have so much love and care from everyone. That also includes phone calls from countless people who ring daily to make sure I am resting and behaving -

Also, can you please pray for our friend, Daniel Frezza who will undergoe surgery on Monday for his Brain Tumour. Daniel, you are courageous and in our thoughts and prayers always, especially on Monday. You are in our hearts always.

To finish this brief note I would like to finish with this thought,

" The heart is the vessel for which Angels pour Gods grace into human lifes."

Take Care,

Brooke and Maria xoxoxo

Friday, December 2, 2005 4:33 AM CST

THE HOUSE OF LOVE UPDATE...

Hi everyone, its Brooke Parsons again. I am here with good news! Maria, Mum as I affectionately call her is home safely. She was discharged from hospital this morning and has come home to the house of love where she is surrounded by all her loved ones. I must tell you everyone is very excited by the test results and the fact that Mum was discharged this morning. At 3am Sammy Joe woke up, wanted to have a party with Christian, Joe and his Nonna - Sammy Joe was very excited to have his Mummy comming home. For those that don't know, this was really the first time Sammy Joe and Maria have been apart so it was a very anxious and nervous time.

However, today when I spoke to Mum we spoke about how fortunate we are to be and have what we have in life. Mum has always put her self last and put her loved ones in front of her. Six weeks ago she had lumps and had no idea wether they were cancerous or not. However, along with the assistance of Angels ( especially, Thomas and the Melbourne Market Lions Club) Mum was able to get the help she required. Mum and the Liistro family are forever thank ful for everyones assistance.

Personally, I would like to say that Mum is an amazing person with a beautiful heart and soul. She is very caring, kind, compassionate and full of fun. I know her husband, Joe and her boys, Sammy Joe and Christian believe the same. Thank you to every single person who have touched their lives, no matter how little your contribution has been, everything means something special to Mum, her family, her extended family and friends.

To all of you who have left notes in the guestbook, for your constant love, care, support, friendship and prayers have all assistanted Mum and Sammy Joe over the last weeks. I personally thank you all for it and I know its a two way street as not a day has gone by where Mum has fulfilled me with questions about everything and everyone. Keep up the fantastic work as Mum makes a speedy recovery.

Keep in touch,

Brooke xoxoxo

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