History

Tuesday, March 10, 2009

I'm sharing your story today Reese. I hope I make you proud. BTW.. thanks for sending me the ladybug the other day - you must have known how badly I needed that.

I love you and miss you..

I hope my hugs and kisses get to you soon..

Love, Mom
~~~~~~~~~~~~~~~~~~~~~~~~~~

I can’t believe 6 years have passed
since I held you in my arms
I only wanted to protect you
and keep you safe from harm

we tried our best to save you
we never left your side
but God had different plans for you
in Heaven, you should reside

the doctors said there’s nothing
more that we can do
so hold your child and tell him bye
for his life on earth is through

we all held our breath quietly
while trying not to grieve
silently praying to ourselves..
come on, baby, breathe

but it was not meant to be
a breath you could not take
your eyes were closed forever now
as our hearts began to break

you slipped away so quietly
as I kissed upon your face
go ahead, baby, it’s OK
and feel our Father’s grace

as your soul soared up to heaven
the emotions were very strong
this can’t be real, please tell me
that the doctors are all wrong

my tears they fell upon you
as I kissed your little nose
I sang you are my sunshine
then I had to let you go

I thank you, Reese, for all the days
you brought sunshine to my life
I look back and have to smile
at the joys and not the strife

for I am at peace now,
because I know that you’re ok
you watch over us from above
you protect and keep us safe

not too many people on this earth
can say what I can say
I have truly been touched by an angel
and he’s with me every day!!!

as the years go by I don’t expect
to be completely healed
my love for you is way too strong
the pain is way too real

but I know I’ll be with you again
up in that promised land
and we’ll talk and run and jump and play
FOREVER HAND-IN-HAND

Shawn Samuelson
proud mother of angel ^^REESE^^
January 29, 2002 to March 10, 2003

Happy “Heavenly” Birthday Reese… Mommy loves you!!!

Tuesday, January 29, 2008

Reese's birthday is here... He would have been 6 years old today...
The emotions inside me are overwhelming - and confusing. On one hand, I count the joys of his living in the presence of our Holy Father day after day.. never enduring the pain that's on this earth.. never having to feel "different" - only "perfect"... he's free, alive, happy, and content...
On the other hand.. well, there's my selfish side - my HUMAN side, that misses him with so much of my heart that its difficult to hold any other emotion than that longing to hold his hand one more time... There's the questioning.. "WHY??? why MY son??? why ME???" There's the emptiness, and the guilt, and the longing, and the pain - oh the pain.. so unbearable at times....
For some who know me, they also know that I suffer from depression. I take medication and I'm not ashamed of it. I would say I now have more good days than bad. The meds help, but there are times when it seems nothing can pull me out of the funk. Reese's birthday was to be a day to celebrate... the labor, the cramping, the tears, the pushing.. all that was to be endured for a small amount of time compared to the LIFE I was giving this child. Yet, it isn't so... there's no celebration of life, another year gone by.. wishing you many more's.. none of that!!! It only serves as a reminder of what I don't have - what I failed at - what was taken from me. My son only got to have one birthday and that just isn't fair... Depression has a way to taking it's dark hold on me on that day and gripping with all it's might...
Now, when his birthday rolls around, it's counted in how many years old 'he would have been'. It really sucks when people ask if I have other children when they see me with Alina or Taylor. I want to tell them I have 3 children.. which leads to the usual "oh, how old are they?".. which leads to "and I had a son, Reese, who WOULD HAVE been 6 this January". I know it can put those around me in an awkward position but what else can I say? That I only have 2? Like Reese never existed?
Some people even tell me that I'm an inspiration. Sometimes I think it's because they don't know what else to say, or they are trying to help me feel better about my loss. I don't feel very inspiring! I'm sad... I'm mad... I'm confused... I'm guilt ridden... and Yes - sometimes even mad at God for playing such a cruel joke on me.. I thought I WAS special when Reese was diagnosed with Hurler.. I thought God must think I was really something else to have entrusted this wonderful, special, rare gift to me.. and then what does He do? He jerks him right out from under me.. how am I supposed to feel now? HOLY SMOKES!!!!
Like I said, somedays... I reach for and embrace the God that gave me that special little boy. I thank Him for letting me be part of a moment in time so incredibly special. Reese brought my sister and I together in a way that will never be erased. He opened the eyes to non-Christians and led the way to Him. He helped people [he'd never even met] forgive themselves and be free from their bindings. He was such an awesome kid stealing the hearts of everyone that knew him. He had a smile that would light up a room - even through the grueling days of chemo prior to his transplant. I remember shaving his head and he was giggling as it tickled him. He was the best little patient and the nurses would fight to get him! He would even let us change his dressing and give him his meds like a little champ.
My sister once said that the memories were fading.. you know the ones - the real ones.. the ones that come to you when you close your eyes and you see him with that paci in his mouth clinging his little taggie blanket? I see those but only in still picture. Like the ones in the slide show and adorning my computer desk. That's all I have.
I used to pray to God to make me insane.. I wanted to have illusions of Reese, like I could feel and see him. That's never happened (and probably for the best) and I've only had a small amount of dreams of my little man - each one I cherish with all that I have. I guess I'll just 'hang in there', and this too shall pass. Once his birthday passes, I can return to my 'normal' self... Until that happens, I'll just continue on this emotional roller coaster of a mourning mother.
I asked for prayer Sunday at church. It seemed a little awkward at first, asking for prayer for myself, but I knew I was going to need a little extra Grace on Tuesday. I'm thankful that's a day that PWOC meets - so atleast I'll be busy for 3 or 4 hours! I guess in a way, I'm asking YOU for prayer, too. I can use ANYTHING you can toss His way...

Tuesday, December 5, 2007

Today is December 5, 2007. Five years ago today my second-born son received his 'new lease on life' by way of a Stem Cell Transplant. I remember being sad that he was in the hospital for his first Christmas (and Thanksgiving, and New Year's, and Birthday) but thankful at the same time that it was securing him for future holidays. Of course, that dream was cut off by his untimely death at the age of 13 months. Never will his eyes sparkling at the twinkling lights on the Christmas tree or gaze at the wonder of what's inside that neatly wrapped box. No birthday candles to blow out. No searching for that perfect green shirt to wear on St. Patty's Day. But you know what? Its OK now. Instead of the Christmas tree lights he gets to gaze at the wonder that is GOD! He celebrates his birthday every day and his garments are of pure silver and gold accented with his very own wings! How cool is that? I miss my little Reesie Cup but I'd never wish him back.. not in a million years.

Monday, January 29, 2007

Happy Birthday Reese!

Are there birthdays in Heaven?
Does the angel blow his horn?
Announcing to everybody
That this is the day you were born?
Can the stars be your balloons
And angel food your cake?
Presents wrapped in moonbeams
All the angels helped to make.
I'll whisper a little prayer today
Asking everyone up above
To sing you a Happy Birthday song
And give you all my love.
~ Author Unknown

WOW baby! You're FIVE today! I bet you've grown leaps and bounds by now. Do they have T-ball in Heaven cause you're just the right age for it now. I bet you already know your ABC's and can write your name now. Are you left handed? or right handed? Can you tie your shoes yet? What about a bike? Can you ride without training wheels or are you still a little unsteady? One thing I DO know is that you are happy! That's what really matters. And healthy!

I've heard that a year on earth is only like a minute in Heaven... That brings me joy - for you - but a year here without you seems like forever.

Reese, I hope that today brings you even more joy knowing that we on earth have not forgotten you and continue to love you beyond measure. Please join us for cake this afternoon as we celebrate your birthday!

We love you Big boy!!!

Mommy, Taylor and Alina

Monday, September 25, 2006

I can't believe nearly 6 months has passed since my last posting. I've been busy - a good busy - but busy none-the-less. Steve was deployed when Alina was only 9 weeks old. He'll be gone for 12 months (4 down, 8 to go). It has been hard and emotionally draining. I keep telling myself that I've survived worse.. that's what gets me through.

October is quickly approaching and it saddens me to know that it will come and go without a Run for Reese this year. This is the first year since his passing that there has not been an MPS Run in his memory. It would have been next to impossible for me to plan it from Germany. Yes, alot could be done via the internet but its just not as easy as that would seem. I hate to think that there may never be another Run for Reese... Who knows....

Alina and Taylor keep me very busy but I always find time to reflect on Reese and talk about him whenever the chance presents itself. I'm now a mother of THREE - two boys and one girl. The hard part is when I say that, folks want to know how old they are.. which leads to "and I had a son, Reese, who would've been 4 in January..." That's so hard... To think about who he'd be today.. He was with us for such a short time. I look at Alina and realize that she is the same age Reese was when he was diagnosed. It amazes me. It seems so long ago I have to wonder if that day ever really existed. It's still a fog.. But, I know that it DID exist.. They told us Reese had Hurler Syndrome. We got gorry detail after gorry detail of what this disease would do to him and his chances of living past the age of 10 was very unlikely. Then, just 7 months later, he was placed in my arms to take his last breath. That was a lifetime ago yet some of those moments are still with me. There are smells that take me back to that PICU room. I'd rather not go back to that place but it's instilled into my memory forever. I'd rather remember him as the happy baby with the smile that melted your heart.. and the way he'd clap his hands to say "more"... I also miss the way he'd jerk that paci out of his mouth and toss it across the room when he saw us coming his way with his oral meds! I'll never get over how he loved taking his medicine! He was so precious. I miss him soooo much but I am thankful that he was mine for but a while.

I don't know how many folks still check in but I'm thankful for those that still do and still keep us in their prayers. Thank YOU for looking in and thinking of us. Be sure to check out the photos.. there'll be one of Alina!

Monday, March 27, 2006

I know it's a little late.. but Reese's little sister Alina was finally born a little over 2 weeks ago. Yes, she made her appearance on March 11, 2006 at 5:00 pm in Ansbach Germany! She weighed 8 pounds 10 ounces and so far is in very good health! I have no complaints!!!

As I said in an earlier entry, I knew that Alina and Reese had some spectacular event up their little sleeves.. well.. Alina came with just one hour of labor and a couple pushes! I was sitting on the side of the bed trying to get my epidural when she decided to COME! Needless to say, I did not get the epidural - just the cathetar - and ended up with natural delivery. Atleast it was quick - NOT PAINLESS - but quick.

She's an absolute doll baby. At times when I look at her she reminds me so much of Reese with her little expressions and dark hair. She sleeps and eats well and is adjusting to life outside the womb like a champ.

I'm posting a picture of her.. and of Reese's Easter flowers my mom put together for him. The red stuff on the marker is from a red balloon that someone left and it melted on the stone. I believe she said Doug agreed to see that it was taken care of. Thanks, Nana, for those beautiful flowers. I wish I could have taken them myself... :o(

I miss my friends and I miss the States, but I'm happy here. My husband is awesome, very helpful, and I've made some really good friends. Now I also have Alina to keep me busy!

Thanks for looking in on us and don't forget to check out the new pictures.

Thursday, March 9, 2006

I can't believe that tomorrow marks 3 years since my baby boy was placed in my arms... finally free of all the tubes and wires of dialysis and life support... It was 2:45 pm and even though they called his time of death at that time, he still took a few shallow breaths there in my arms. I remember looking up to Heaven and crying "WHY? WHY? WHY?" He was so heavy, so lifeless, and there was no magic in the room. There was no 'gentle breeze' or a 'heavenly light'.. no rainbows shining through the windows. He was there... and then... he was gone. I remember feeling complete numbness. I know, now, that it was God's protection. He knows what it's like to see your son die and He was protecting me from that pain. Yet... I'm no longer numb to that pain. As I feel the new life inside of me kicking and squirming, I should feel complete happiness and overjoyness. Don't get me wrong, I LOVE my new baby girl. But, no matter how much love I have for my other children or how much love I receive from them, it will NEVER replace what I feel for Reese.

I shared my story with my new circle of friends here in Germany. I go to a bible study each Tuesday and as National MPS Day approached, I gathered up some strength, some pictures of Reese, some purple ribbons, and my knowledge of MPS and stood there in front of my new friends and told my story. I cried, they cried. It's never my intention to make anyone feel sorry for me when I speak of Reese, I just want them to know he exists! Now that I'm pregnant, people ask is this my first child. No, this is my 3rd... Oh, how old are your other children? I tell them Taylor will be 8 in May and my other son would have been 4 in January. It's at that time that I feel the urge to tell them about Reese, how sweet he was, how he was my angel, how he brought so many people together - hoping and praying.. how he could light up a room with his smile and how he much he loved his big brother. But, who wants all those details from a simple question?

Reese's little sister is past her due date. I imagine her spirit up in heaven with Reese right now. She just doesn't want to leave him just yet. She knows she won't see him again until she returns to heaven. I don't blame her - not one second... But I am eager to meet her. Maybe they are planning, together, to bring her into the world tomorrow... on March 10... the day I call "d-day". Though Reese was healed and relieved of all the trials and pains of this earth, it was a huge loss for us here left to live without him. It's a hard day to "celebrate" and maybe the two of them want to help me "celebrate"...

I don't know.. I have no idea when his little sister, Alina, will show up. I'm eager to hold her in my arms, kiss her, hug her, smell her, and tell her about Reese. Of course, she probably knows all that... She's just waiting for the right moment.

Dear Reese,
I miss you today as much as I did when you left my arms and flew to heaven. I probably love you even more... IF that's possible. I think about you every single day and long to see you again. I know you're with me... in my heart... and I know that I'll see you again. That's what keeps me going. I know you're up there with your little sister planning something spectacular and I can't wait to meet her. It's ok, baby... send her tomorrow, send her next week.. you know that I'll love her with all that I have and I won't let her forget you. I'd love to see you in a dream soon. I haven't seen you there in a while. Can you come tonight? I love you so much!!!
Sending millions of hugs and kisses to heaven..
Mommy
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

Friday, February 3, 2006

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Friday, January 27, 2006

Hello my sweet, precious, beautiful baby boy. In two days you'll be celebrating your earthly birthday number FOUR. I wish you were here to celebrate! We'd have cake, candles, ice cream, and all your little buddies. But what I wish I could give you the most are hugs and kisses. I want to hold your little hand, touch your soft skin, and look into those big brown eyes. I miss you soooooo much.

Nana and Taylor took you some pretty blue and yellow flowers for your birthday and Taylor even got you a card. I hope you can enjoy them and know they come from love. Tomorrow I'll go look for some balloons to send to you on Sunday. Oh, Reesie Cup... we miss you.

Mommy is also sending hugs and kisses up to Heaven. I hope they get there in time for your birthday.

Happy Birthday my sweet Reese! Mommy loves you!!!

Saturday, December 24, 2005

Dear Reese,

Mommy just wants to say Merry Christmas!!! I hope all you angels are having a blast celebrating Jesus' birthday! That's what it's all about!!!

Hope to see you in my dreams tonight.... may all your Christmas wishes come true!!!

Lots of love,
Mommy
XOXOXOXOXOXO

Tuesday, December 6, 2005

Dear Reese,

Three years ago yesterday, you were given your new lease on life... the life-saving cord blood transplant! Ironic, huh? We took you there to save your life - not shorten it.. but God had other plans. I have to remind myself ALL the time that you are in a better place.. It's hard, tho, baby.. I miss you so much. I can't believe you've been gone for so long. Every day is a challenge for me to 'keep it together'. I know you understand because you send me signs... I know you're there, you're here in my heart, and a part of you is also in my belly. Your baby sister, Alina Danielle, will ALWAYS know you. She'll know why her room is decorated in Ladybugs and who that angelboy is on her walls and in her photo albums. She'll learn that her middle name is in honor of a great, wonderful big brother who watches her from above and tickles her cheeks with butterfly kisses.

We have alot of 'anniversaries' coming up. I remember the week of Thanksgiving when cried my eyes out.. missing you. Remembering that was the week you were admitted into the hospital for your transplant.. and yesterday - the anniversary of that transplant. January 2 will be the anniversary of your 'release' from 5200, then Janyuary 29 would have been your 4th birthday. Then, there's the most dreaded anniversary of all, March 10... a day that will always be the one that haunts my every move.. the day you took your last breath in my arms as I cried "WHY?".. that's the day I had to leave you in that bed in ICU, all alone, knowing that I'd never get to hold you again. The pain is just as real today as it was that day... I miss you baby.. that's all I can say! I love you, I miss you, and I think of you every single day.

Reese, if you would, could you give mommy a little extra boost of support for the next several months? Send me a breeze to remind me you're there, visit me in a dream and let me see how well you are again. I love seeing you there, playing peek-a-boo with you. You're my special boy!!

Sending you hugs and kisses from earth... Love always, MOMMY

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

Saturday, October 15, 2005

Wow... has it really been THAT long since I've updated? Sorry guys!

We did have the Run for Reese / Jog for Jordan last Saturday. We did have a pretty good turn out DESPITE the pouring rain!!! Again, it was one of those bittersweet moments when the balloons when flying up into the air (even in the rain) and we thought of our angels who have passed and those still fighting this horrid disease. We had a newly diagnosed MPSII child to come all the way from Banner Elk. His name is Nathan and he's 9 years old. The most amazing thing to find out about him is that he was only diagnosed 4 months ago!!! They contacted one of my fellow coordinators having found us on the MPS Society page and drove several hours to be there. It was nice meeting them and assuring them that they aren't alone in this journey.

I just returned from another MPS walk for Maddy Wigglesworth. I drove to Raleigh last night and stayed with Carrie (^^JORDAN^^'s mom) and we went together. There were quite a few MPS families there, along with Dr. K, Dr. Muenzer, and his assistant Amy Fisher. It was nice to see them all again. Seeing these MPS kids and how they are doing - some well, some just making it by - is so hard on me at times. One one hand, I'm so happy they are doing well and the other, I can't help but feel a twinge of jealousy in wondering why my baby didn't even survive the transplant. It's suge a double-edge sword.

For other news, Libby is finally doing better after dealing with food allergies which was causing excrucitating stomach pains. I felt so bad for her - and Toni - but I'm glad they have her on a more allergy-friendly formula now. When I went to see them I had the hardest time putting her down. She is just the cutest little thing and every time I looked at her she just got cuter and cuter!!

Steve and I found out on October 4 that we are also having a girl! I can't believe I'm going to have a DAUGHTER.. I'm kindof in freak-mode because I've always thought boys were much easier. You want to know the thing I dread the most? You're gonna laugh at this, but it's BARBIE... I can't stand all those little parts that get strewn all over the place! See? Told ya you were gonna laugh! Most of all I'm happy to report that during the level 2 ultrasound everything looked really, really good. No signs of birth defects, downs syndrome, or hurler. Of course, we really won't know for sure until she's born. But I did feel much better after that ultrasound.

Steve and I will be leaving for Germany on the 27th of this month. Taylor will join us after he's finished his 2nd grade of school and spent some summer with his dad. In July next year, he'll come to live with us in Germany. He'll still get to come home to visit his dad, grandma, and other relatives during his Christmas and Spring breaks from school, and the summers. He's looking forward to living with his dad for a while. Even though I don't know how I'm gonna live without him for nearly nine months, I'm looking forward to the alone time with Steve - well, atleast until March! LOL....

I guess that's it for now. Thanks for checking in and hopefully, I'll be able to continue updates once in Germany.

Love,
Shawn

Friday, August 26, 2005

Reese Daniel Coble finally has a new cousin!!! YES... Elizabeth Reese Stedman (Libby) was born today weighing in at 6 pounds 13 ounces. She's very healthy, bald and beautiful (well, we haven't seen her yet but I'm sure she's beautiful!). Proud mom and dad are probably stepping onto the plane at this very moment to fly to meet her. They will be arriving at 6:15 tonight and once they get the rental car, they're heading straight for the hospital.

This moment has been a long time coming. I'm thrilled to pieces for my little sister and her husband. They've longed for a child for so long and it's finally happening! Plus - she is named after our little Reesie Cup! What a tribute!!!

Once I receive a photo or two, I'll post them. I'll be heading to visit them as soon as I can to help out - yeah right! All I'll want to do is hold her and feed her but I'm sure I'll have to fight Toni for her!!! Hey - it's ALL good... and we're all relieved that Libby has arrived!

I ask that you say an extra prayer for the birth parents tonight, as they are some very courageous, loving, wonderful parents. I can't imagine being in their shoes. But they want what's best for their daughter and know they just can't provide that right now. I mourn for their loss just as I rejoice for our gain.

Happy Birthday Libby! Aunt Shawn loves you VERY VERY VERY much!!!!

Monday, July 25, 2005

Hello everyone! I think it's time to do an update, don't you?

Alot has conspired since my last entry and I think I'm ready to share it now.

As you know, my husband is in the military. The U S Army has decided that he's been at Fort Bragg long enough and has given him a new assignment. So, as of 1 October, he will be stationed in Ansbach, Germany for 2 to 3 years. There are still MANY details to work out with the MAJOR one including Taylor! Doug wants him to stay with him here in the states. I want him to go with me, to Germany. As you can see, this poses a problem. I don't expect this to be an easy journey. I know that Doug and I will not see eye to eye on this so it looks as though the court will have to decide. It is an extremely stressful situation. It's hard to get excited about all the opportunities and adventures we're going to experience with this weighing so heavy on us. I only want what's best for Taylor.

But wait! There's more...

Steve and I are expecting! Yep.. this one is due March 9, 2006. I'm only about 8 weeks and scared to death for a number of reasons. This is about the time that the heart has stopped beating in two previous pregnancies (before Reese). Also, this pregnancy came as somewhat of a surprise and we have not had Steve tested. I have to pray that the odds are on my side. The chances of meeting someone with that carries that same mutation is like 1 in a million.. but it has happened before. I'm sure that an amnio will be involved if we make it that far. I'm due for an appointment on August 10. If I hear a heartbeat, we're halfway there. Then, we will have the baby tested for Hurler in-utero. The due date also makes me nervous as it's so close to Reese's heaven day. So far, the pregancy has been pretty much text-book. I'm tired all the time, have NO energy, and feel sick to my stomach on an hourly basis. My 'morning sickness' last all day! LOL I hope all this is a good sign of a good, healthy pregnancy!

So.. there's much to be excited about yet the possibilities of it all coming crashing down is there... Only a matter of time will tell.

Other news:

Toni and Andy's little one's due date is a short 4 weeks away. I'm so excited and PRAY, whole-heartedly, that the birth mother and father don't change their minds at the last minute.

Mom had her surgery. BUT, it didn't fix the problem. She still cannot talk very well. Now they will try some botox injections and see if that works.

The Run for Reese / Jog for Jordan is still in the planning stages. There are several of us working to make this thing happen. I plan on staying in the states until the Run is complete.

I appreciate all of you checking in on us. Any prayers you can muster up are also appreciated. I'll try not to keep you all in the dark for so long next time.

Thanks again...
Shawn, Steve, Taylor, ^^REESE^^, and BabySam (the nickname for now)

Thursday, June 9, 2005

Hi everyone! Sorry for the lag in updates. There's been so much going on lately that I haven't had much time to sit at the computer.

I'm finally moved... Steve and I moved all of mine and Taylor's things to the Sanford house. I never knew I had so much strength... moving TV's, dressers, monster mattresses!! I'm FAR from being settled in as alot of stuff is hanging out in the garage, but I'm sure within the next year or so, we'll have everything in it's place (LOL!).

Taylor has been with his dad since his last day of school. I haven't seen him in almost 2 weeks and I'm missing him SO much. I can't wait to see him on Saturday and take him in my arms and smooch all over his his cheeks. I also can't wait for him to see his new room with the comforter set he picked out. We even bought some Hotwheels wall border but haven't had the chance to hang it yet. Taylor's excited about having his PlayStation2 and Satellite TV in his room. At our other house, it was in his playroom. We also have a pool and lakes here that he will be able to enjoy this summer. He LOVES to swim and I am excited about getting him into the water.

Right now, Noah and Katherine are with us for a month. They are pretty self-entertaining so I can get alot of things done during the day while Steve is at work. Katherine is SUCH the little princess. Her favorite color is PINK and today she picked out a sundress to wear. Noah has quite the imagination and can create a town from boxes (which there are plenty of around here!). The name of the town is "Boxville". I've enjoyed their company and have even handled the 'trantrums' fairly well. It's absolute that these children are TOTALLY their own person and are very different from Taylor. I'm truly realizing the 'adjustments' to step-parenting. BUT, I have NO complaints.

Toni and Andy are getting closer and closer to being parents. I can't wait to see that precious baby in her mother's arms! Toni sent me photos of the nursery and it looks like it came straight out of a magazine! I'll keep you guys up-to-date the best I can in her adventures.

The Run for Reese / Jog for Jordan now has a date! Mark your calendars for Ocotber 8, 2005. As in previous years, it will be held at Tanglewood. This year's event will be run by the Twin City Track Club so times will be "official". Prayfully, we'll have a huge turnout of runners. In the past, we've only had about 20 runners but we have managed to raise just over $5000 each year. The run is costly to coordinate so if you know of anyone willing to sponsor, please direct them to me and I will coordinate with the team. Our team this year consists of, of course, Bob Goldstein and Robin Boger, Carrie Horton (Angle Jordan's mom), myself, and our newest member, Leslie Phillips. I think she's an angel sent from ^^REESE^^ and ^^JORDAN^^ as she just recently contacted me to help out. I'm looking forward to meeting her and getting to know her.

Remember in my last entry I was wondering when the sky was going to fall? Well, there are bits and pieces of it bopping me in the head now. I won't elaborate at the moment, but there are some things going on in my life right now that I can only say "I need your prayers on". God will know what you mean...

Thanks for checking in... I'll update on the run as I know more things...

Love,
Shawn, Steve, Noah, Taylor, Katherine, and ^^REESE^^

Friday, April 22, 2005

OK... this is scary and I don’t know if I need to be tempting fate by posting all the GREAT things that have been happening. But, I’ll take my chances. The last post was rather depressing and I need you to know that it’s not always like that. I’m going to save the best for last though, so don’t go anywhere!

First of all, my husband is finally home from Kuwait. Prayfully, he’s home for a long time. He came home on April 8. On the 7th, I decided on the way to my car after work, how cool it would be to meet Steve as soon as he set foot on American soil. I went online, bought a round-trip ticket to Atlanta, with my trip home, to Greensboro, on the same flight as his. I had this great fantasy of watching him get off the plane, stepping up, tapping him on the shoulder, and surprising him. WELL.. it didn’t quite work the way I planned but it was a great surprise to him – once I FINALLY found him in the airport! It was a great reunion! All at once it seemed he’d never even been away. He’s home… and I’m happy!!!

Although 100 miles currently separate us during the week, I’m a short 5 weeks away from moving from Winston to Fayetteville. My house is currently on the market, my resignation has been submitted and soon, we’ll be together full-time. Taylor will be spending as much time with Doug this summer as he will with us. We’ll also have Noah and Katherine for the entire month of June. I know Steve misses his children something terrible and a chance to spend a month with them is a great opportunity. They live 6 hours away and it’s difficult to see them on a regular, every-other-weekend basis. We do what we can, though.

This weekend Taylor, Steve, and I will be joining Taylor’s cub scout pack on a camping trip. From what I heard, there’ll be lots of fishing and playing on this trip. This is the last trip Taylor will have with Pack 712 and I want to make some great memories for him.

Next weekend, Steve and I will travel to Georgia for Katherine’s 4th birthday and Noah’s first communion.

OK. Now let’s talk a little about Nana Julia. Nana is doing GREAT. She has a new friend whose company she enjoys immensely. She has a great job with the school system here, she’s a Nanny times two for two very lucky families, and she also picks up odd jobs at the ball field. She’s loving her independence and is staying very busy. For any of those of you who’ve met my mother, you know she has a voice disorder. She was diagnosed with it over 10 years ago. She looses her voice all the time and has to whisper most of the time. WELL… she finally has an appointment with a throat specialist next Tuesday! It’s most likely possible that she’ll qualify for the botox injections so she will have her voice back!!! She was so excited when she called to tell me that she was on the verge of tears!!

Now.. the BEST.. I’ve saved if for last. Many of you know Toni and Andy have struggled with infertility and 2 failed attempts at in-vitro. They’ve decided to adopt and have been through all the paperwork and classes required. Within three weeks of submitting their profile to the adoption agency, a birth mother and father quickly chose Toni and Andy to be the adoptive parents of their child!!! Toni and Andy are finally going to be a mommy and daddy!!! The baby is due in August and they are meeting the birth parents this weekend. Needless to say our nerves are all over the place. We are so close but August seems SO FAR AWAY! I couldn’t be any happier for them. I’m going to be an AUNT!!

With all the great things going on, the scary part is wondering when the sky is going to fall. Mom made the comment the other day that God must have either decided He does like us after all or He figures we’ve paid our dues. I don’t know, I just pray that good things continue to happen… that mom gets her voice back, that Toni and Andy have a healthy baby, and Steve and I continue on this road of happiness with our marriage and our children.

Thanks for checking in and please leave a message that you were here.

God bless!!!

Sunday, April 3, 2005

yesterday was very trying for me.. as i was sitting at taylor's soccer game, a set of grandmothers sat beside me.. sharing their tiny grandson. he looked to be about 9 or 10 months old. he had fuzzy blonde hair and big round blue eyes. his little hands were so chubby there were little indentions where his knuckles would be. they called him toby and i couldn't seem to take my eyes off of him. every time the crowd would cheer he'd clap his little hands and bounce up and down in grandma's lap. he was cheering for his big brother. that's when it hit me.. a huge wall of grief. i was completely overwhelmed with it. it was very hard to hide. i kept imagining reese.. with his short little body, fat fingers, his little hearing aids and possibly glasses... cheering for HIS big brother.. wanting so badly to be out of that gym floor with him, kicking his own little ball around. he has jet black hair, big brown eyes and perfectly arched eyebrows.. a smile as wide as his face that absolutely melts my heart. each little thing he accomplishes gets a big cheer from mommy and he comes running to me, his arms wide open and i pick him up to give him a big hug and kiss his fat cheeks.

at this point, with no tissues around, and trapped on the top bench behind butt-to-butt moms and a wall behind me, i was wiping away the tears with the sleeves of my jacket. my stomach became one big knot and my body heat seemed to rise very quickly. this is how it is.. when stricken with grief... you never know when, where, what, or who will set it off. i was all alone, in a crowded gym. i felt lost. i wanted to run out of the gym and find a bathroom, lock myself in a stall and just cry as hard as i needed to. trying to compose yourself when you feel like this is just as tiring as just letting it out.

by the end of the game, it was obvious that i was smittin with this tiny little boy beside me. i told his grandparents that it made me miss my little one. they said they miss their's being little, too. then i told them that i had a 13 month old that passed away two years ago. the tears were in the crocodile range at this point and for the first time in my life, i couldn't tell these ladies 'what happened to him'. i had no intentions of making them feel bad.. or even sorry for me.. you know me - i want everyone to know about reese - but the rock in my throat wouldn't allow me to share my story.

the rest of the day found me totally exhausted. my stomach hurt and i wanted to throw up. every time i sat still, i just wanted to curl up and sleep. i did catch a few z's but there were things to be done, and taylor needed my attention. i was so happy to go to bed last night - i went to bed missing reese - and woke up missing him.

today is going to be different.. instead of dwelling on my little blessing that i lost, i will relish in all the other blessings that surround me. taylor has a scout outing today and steve will be home from kuwait on friday. it will be nice to have my husband home again. even though we'll be living 2 hours from each other for the next 2 months, atleast he'll only be a phone call away - instead of 6000 miles!

Reese Daniel, mommy misses you so much.

Tuesday, March 15, 2005

Grief is laughing with your children and wishing for the absent one to make the circle complete.

Grief is crying in your car at stoplights.

Some days grief makes you brutally honest; other days,grief muzzles you.

Grief reconstructs your heart.

Grief is sadness, hope, smiles and tears - rolled tightly like a snowball.

Grief makes you search past the stars and the moon for Heaven.

Grief strips you of everything you were pretending to be.

Grief gives you new priorities.

Grief opens hidden treasures from deep within your soul.

Grief allows you to empathize more deeply with others who ache.

Grief makes you unapologetically bold.

Grief is a daily companion, best dealt with by admitting you do walk with it, even after all these years.

Grief is the price of love; grief is a gift.

Wednesday, February 16, 2005

NEW PHOTOS

I just ran across an article and on the MPS Society webpage that brought more IF ONLY’s into my head… Little did I know that Hurler children going through transplant have a higher rate of lung and airway complications. Now, the University of Minnesota has determined that treating Hurler children with ERT 12 weeks prior and 8 weeks post, reduced the possibility of complications. Can you see where I’m going here? IF ONLY ERT had been approved be then… IF ONLY Duke followed the same protocol… IF ONLY I had waited for ERT… IF ONLY.. IF ONLY.. IF ONLY….

The 2-year ‘sad-iversay’ is quickly approaching. March 10 signifies the worst day of my life and no matter how many years go by, that day will ALWAYS cause my pain and sorrow, that I worked so hard burying, resurface and rear it’s ugly head. Of course, in my experience, the anticipation of D-Day is usually much worse than the actual. So, getting there hurts the most.

I know my precious son was released from the pains and trials of the world, that he now lives in peace and harmony, that he can walk and talk and hear and see clearly, that he sends me little signs that he’s with me, and he has sent many blessings my way since he was born just over 3 years ago. But my heart hurts, my pain is indescribable, and my longing to hold him just ONE MORE DAY will never go away.

Most days, I have peace… but then the grief and sorrow over shadow that peace and I feel lonely and helpless. At times, I feel like a failure as a grieving mother having moved on with my life. I have found happiness but sometimes knowing the price that had to be paid kills me. I look at my son’s photos pasted all over my cube and fall in love with his eyes and that smile all over again… but knowing that’s the only way I’ll see them this side of heaven is a heartache too painful to deal with.

So, here I am, almost 2 years since my son took his last breath in my arms, and the pain is still just as raw as it was that day. It’s funny how a person can be so happy yet so sad at the same time. They are different levels… different reasons… and different emotions but they all reside in my heart.

Reese, I hope you like your butterfly that I got you for your birthday. And I hope you enjoyed your balloons. Taylor and I miss you soooooo much and we talk about you everyday. You will forever be in our hearts and our minds – never far from us. I’d love to see you in my dreams again.. to hold you and give you a big fat mommy kiss on those sweet cheeks. Come see me sometime, OK? I love you so much! Here’s some hugs and kisses from earth! XOXOXOXOXOXO There’s plenty for you and Noah, Jordan, Brittney, McKenzie, Max, Carter, Bella, Christopher, Tommy and all your other sweet friends who’ve joined you in heaven. It’s ok to share with them!

Article from MPS Society:

Scientific protocol for treating children with severe MPS I with a combination of Stem Cell Transplantation and Enzyme Replacement Therapy at the University of Minnesota

The University of Minnesota has been a pioneer in the treatment of children with severe MPS I, also called Hurler syndrome, and other storage disorders using stem cell transplantation (i.e., bone marrow or cord blood transplantation). To date, approximately 100 transplants have been performed at the University of Minnesota for Hurler syndrome alone. We are committed to the comprehensive and long-term care of these children, including evaluation and treatment of issues unique to these children before and after transplantation. Our team has extensive and long-standing experience in the assessment and treatment of complications of Hurler syndrome, including problems of the eyes, ears, lungs, heart, bones and joints, as well as neurological difficulties. The University of Minnesota constantly strives to improve results and outcomes following stem cell transplantation. The most recent such innovation at Minnesota (for children with Hurler syndrome) is the development of a scientific protocol for the combined use of enzyme replacement therapy and stem cell transplantation. The basis of this combination therapy is as follows:

Hurler syndrome is the most severe form of Mucopolysaccharidosis I, and is characterized by progressive mental regression, heart and airway disease as well as bony deformities; death typically results in the first 10
years of life.

Laronidase (trade name Aldurazyme) is the commercial preparation of the enzyme that is deficient in Hurler syndrome. Laronidase enzyme replacement therapy (ERT) does not directly benefit the brain in children with Hurler syndrome, and hence does not represent a satisfactory therapy in itself. However, Laronidase can provide other valuable benefits: in particular, it clears airway obstruction and improves lung function.

Stem cell transplantation is the only proven therapy that can prevent the progressive mental retardation and give hope for long-term survival. However, stem cell transplantation is not free of risks and complications. Children with Hurler syndrome are particularly prone to get lung and airway related complications during transplantation. Based on these observations, we believe that treating with (ERT) for 12 weeks before and 8 weeks after stem cell transplantation will decrease complications associated with stem cell transplantation, thereby improve outcomes and survival in children with Hurler syndrome undergoing transplantation. The University of Minnesota has developed a protocol (the first of its kind) to systematically administer this therapy in a uniform manner as well as to study the results of this combination therapy as compared to stem cell transplantation alone.

Thursday, February 10, 2005

The following journal entry was actually copied and pasted from another MPS child’s website. You may remember my mentioning Lindsey Efird (MPS-III) in the past. Her mother is working to raise awareness of National MPS Day on February 25. Please feel free to contact her, OR, contact myself regarding the items listed below. THANK YOU!!

February 25 is National MPS Day. The Society is proposing a resolution in Congress to officially designate this day and the color purple. It will help us to bring awareness nationally. Hopefully it will get approval soon. In the meantime, there are several items The National MPS Society has created to help bring awareness to the public. The items were made available at the Family Conference in December.

There are purple ribbon lapel pins, purple “Courage” bands (bracelets), purple ribbon car magnets, tote bags with self drawn portraits of MPS kids (Hannah drew Lindsey’s portrait…it looks like a Mr. Potato Head with a trach and g-tube and it’s a treasure to me). All of these items were created for fundraising efforts and for MPS families to have. I love them all and have each one!

The Society will also be ringing the NASDAQ opening bell on February 25. Several MPS officials and family members will be present to “ring the bell”. The market opening can be viewed on the NASDAQ web cam at http:/www.nasdaq.com/reference/marketsite_about.stm. Scroll to the bottom of the page and click MarketSite Webcam. Download about 9:15-20a.m. for the Market Opening at 9:30a.m.

Now on to why I’m writing this…

What I want to do in Lindsey’s honor – and for the Courage she has shown for almost three years in this journey – is to have a fundraiser for National MPS Day, February 25. If you would like to contribute, please contact me via telephone (704/982-1102) or eMail (efirds4mps@ctc.net). I’ve listed the items below with a "suggested" donation amount. Please make checks out to me, Karen Efird and mail to our home address, 1104 Mountain Creek Road, Albemarle NC 28001. I will mail a personal check to the Society for all items combined. Let me know which you are interested in having…in Lindsey’s honor:

Purple Ribbon Lapel Pin $2.00 donation
Purple Rubber Courage Band (bracelet) $5.00 donation
Purple and White MPS Car Magnet $10.00 donation
MPS Portrait Tote Bag $10.00 donation

If you would like to become a member of The National MPS Society, please contact me (I have forms) or visit the Society website (www.mpssociety.org) to download a form. The annual due is $50 and you will receive the quarterly publication, Courage. This “magazine” is filled with family stories, pictures, events, efforts being made in research and legislature, etc. Being a member and/or contributing to fundraisers benefit all MPS children and families, current and future.

Again let me know if you would like to contribute to the Feb 25 Fundraiser and/or join the Society. Thank you again for your kindness, love and support during our journey with Lindsey…

Karen Efird

Saturday, January 29, 2005

Dear Reesie Cup,

Happy 3rd Birthday my sweet baby boy...

Mommy loves you so very much and she misses you a whole bunch - especially here lately.

Taylor and I will be sending you some bright orange balloons soon. I hope the cold weather doesn't keep them from reaching you in Heaven.

I'm sorry I won't be able to visit the cemetary today but I'll get there a soon as I can. I love you so much and think of you every single day and night.

I hope you and all your buddies are celebrating with cake and ice cream. Don't worry about the balloons.. I'll make sure they get there in time!

Taylor misses you very much - but I'm not telling you anything you don't know. He loves you and is looking forward to being with you again. Please keep an eye on him when I can't.

Sending you hugs and kisses from earth...
Mommy and Tator Tot...

XOXOXOXOXOXOXOXOXOXO

Wednesday, January 19, 2005

Wow…. Almost six weeks have past since my last update. I don’t ever recall letting it go that far before. Sorry guys!

A lot has happened since the last update. Of course, Christmas came and went and it seemed a little easier until I went to the cemetery. Steve stood there with me as I shed my tears. As much as I want to say I’ve accepted Reese’s death, I’ll never be over it.

Taylor had a great Christmas getting some news PS2 games, a kettcar, and even a TV for his room at his dad’s house. Steve’s children, Noah and Katherine, got to spend some time with us, too. It was nice having Steve home, even if only for a short month, from his military duties in Kuwait. One of our trips with all the kids included a tour of the holiday lights at Tanglewood. We all enjoyed them but the kids were really fascinated with them.

My how things change… Two years ago, on New Year’s Eve, I was in Reese’s hospital room, unable to sleep, and totally unaware it was even a holiday. This year, I watched fireworks from the back porch of our honeymoon cabin in Gatlinburg TN with my new husband. Yes, Steve and I were married on 12/31/04 in a chapel in Gatlinburg!!! It was a kind of last-minute decision we made on Thanksgiving. We just couldn’t wait until June. So, with only my best friend and her husband by our sides, we took the vows of marriage at 2:00 pm that afternoon. Just think – a party every year on our anniversary! I believe Reese sent us his blessings when we found a couple ladybugs in the cabin! Thanks baby – mommy loves you sooooooo much!!

That’s not the only wonderful thing that happened that day. Taylor called me at 11pm that night to announce he’d just lost his first tooth. I hate I wasn’t there but he was really excited and he was with Doug. The next morning he told me the tooth fairy had left him dollar for his tooth. He purchased himself (what else?) a Hotwheels car! I believe, if we total up all of his cars, be probably has over 400!!!

Taylor and I have talked a lot about Reese lately. He has so much running around in his head. The other day as I was praising him for his perfect report card he asked if he keeps doing well in school if I thought he could go to Duke. Ever since Reese’s treatment there, one of Taylor’s dreams is to be a doctor to help kids like Reese. Hey – I’m all for it and will support him no matter what he wants to be. Later, the conversation came up again. Honestly, he told me he wished he were already in Heaven with Reese. I said he had to stay here, go to Duke, and be a doctor for the children. Then he voiced his true concern: “But what if the kids are really sick and I have to turn off the machine and they die?”. Boy – talk about a knife in the heart. I answered him the best I could fighting back the tears. No 6-year old should have thoughts like that in his sweet little head. But it’s reality for us… and Taylor has to live the rest of his life knowing he has a little brother who’ll he’ll never know until he, himself, reaches Heaven. He’s also asking a lot of questions like now that Steve and I are married, are we going to have another baby. He really wants a baby brother or sister but we really don’t know at this point if we’re heading in that direction. We really need to get Steve tested to see if he’s a Hurler carrier. If he is – it’s an automatic NONO. If not, we’ll look more into the decision.

Other news to report: Christy is also getting married! She got a ring from her boyfriend, Brian, the week of Christmas and they are planning a wedding for September. She even asked me to be her matron of honor! I gladly accepted and I’m honored to be by her side during one of the most wonderful days of life. We had dinner with them this past weekend and it is was so good to see Christy with that smile on her face. Brian is a sweetheart and I can tell he loves her very much. China has also taken to him – I could tell by the way she walked into the restaurant holding his hand. Christy’s also back in school working on a business degree. Christy, like the rest of the grieving parents in the world, still has bad days and misses Brittney beyond belief. But, she has realized that life must go on and happiness is a possibility. I think that, like me, Christy is ready to be happy and she has finally allowed herself that happiness.

Reese’s birthday is in less than 2 weeks. I can’t believe he came into this world almost 3 years ago. To honor his birthday, and him, I’m getting a ladybug tattoo that day. Nana is also getting an angel tattoo in his memory. Back in November, Doug got a tattoo of Reese’s face on his shoulder. I wish I had a picture to show you as it turned out quite well. I’m sure I’ll also visit with him at the cemetery and take him some balloons. Maybe 3 big, bright orange balloons will do this year!!

We have a lot going on in the next 6 months or so. I’ll be putting my house on the market and hopefully selling by June. That’s when Taylor gets out of school and we’ll make our move to Sanford, NC (about 2 hours from here) to be with Steve. Taylor will still get regular visits with Doug, we’ll just be a little farther away.

I know that Reese is with us every day and blessing us all the time. He’s still a huge influence on so many people. Next month, Bannertown Baptist Church is having a Sweetheart Supper to raise money for the MPS Society in the name of Run for Reese. I’ll be visiting with the church on 06 Feb to talk a little about Reese and the society. Reese – I’ll surely need you by my side that day!!

Well, I guess that’s it for now. Thank you for continuing to check in on us. I check the guestbook on a daily basis, so if you stop by, just say hello!

Love you all….
Shawn

Monday, December 6, 2004

Whoa.. am I healing or just being a bad mom? I was just sitting here, at my desk, trying to remember what was going on two years ago. DUH! Yesterday was the 2-year anniversary of Reese's transplant. I know I thought of Reese yesterday but the big event escaped my mind until just now.

Is this good? That I no longer dwell on December 5 anymore? Or that sometimes the 10th of the month can come and go without reminding me how much I miss my son? Is it OK that I finally feel enough peace to give away some of his toys? My trips to the cemetary are even getting fewer and further between.

Sometimes I feel like if I accept Reese's death that people will think I don't love him anymore. That the only way to remember your lost child is to mourn. How can someone be happy after going through such trauma as that? People told me it would get better - or atleast easier - to live with the pain and yes, the pain is still there.. however, it's much easier to deal with these days.

I have to look back and contribute my 'peace' to the fact that I've moved on.. without forgetting my son. I still check on many Hurler babies and other MPS children... I still keep in contact with them and visit when I can... I will always have the Run For Reese... and I will always have his portrait hanging over the mantel, his taggie by my side, and will see to it that Taylor and I speak of him often... And, if I'm lucky enough to have another child, they will always know about their big brother "Reesie Cup". I'm ready for happiness, therefore, I can accept it. Bring it on!!!

2005 is going to be a much better year. I know it this time!!!

Here's wishing everyone a Merry Christmas, a Happy New Year, and GOOD HEALTH!!!!

Monday, November 15, 2004

RUN FOR REESE UPDATE: Current funds raised are $3,909.00!! Thank you everyone!!!

Why do I have to start another entry like this? Yes, we lost another child to Hurler Syndrome last Friday. Fifteen month old Evline died in her father’s arms at Duke Hospital on November 12. WHY??? WHY??? WHY??? She had been doing well, but was on the vent for some lung bleeds. I had no idea when I went to Durham yesterday that her family was not going to be in the PICU waiting room so I could meet them. Instead, they are in KY, preparing funeral services.

I did, however, have the honor of visiting with little Laney Biggs. She’s in Durham for her 2-year post transplant studies. She’s an absolute doll and was quite taken by Taylor. Carrie Horton met us there as well. Of course, our conversations always turn to transplant life. We talk about how UNEDUCATED you are going into transplant. When your child is diagnosed, it’s do or die. You don’t have time to put all your energy into research. BUT, then again, no one goes in with the attitude that their child will not make it. I remember speaking with Dr. Muenzer right after Reese’s diagnosis. He told us, and I quote “If you absolutely, positively, cannot live without your child, DO NOT have a transplant”… We knew it was ‘serious’ but we also KNEW that our child was going to be just fine. Reese was young and healthy – a prime candidate for a successful transplant. So why should we have believed any differently?

In reality, the survival rate of a transplant of this magnitude is only about 31 They don’t tell you that going into transplant. I have to look at children like Laney Biggs and Cameron Nicolls to have any faith in this treatment. That’s why it is SO important to me to keep up the awareness of this hellish disease and raise research funds. We’ve GOT to find a cure people!! There’s just no denying it!!!

So, if you have a few dollars to spare, please, donate to the National MPS Society… It only takes a small amount to make a HUGE difference. You can go to our Run For Reese website or The National MPS Society webpage and donate online – no need to write a check or use a stamp! It’s simple, easy, and could save the life of a child that YOU know!!

Friday was a very emotional day for me. I talked to Doug on the phone and he said he needs me to go through the things out of Reese’s room that he’s packed up. His toys have still been in there and clothes still in the closet and his dresser. Although I hadn’t ‘seen’ them in over a year, I always felt his things were safe in his old bedroom. However, I can’t expect Doug to keep it some kind of ‘Reese Shrine’. But just hearing that Reese’s things were all packed up hit me like a brick wall. After talking with Doug, I sat at my desk at work and just cried like a baby. I was crying so hard, I was sobbing. It felt like I was back in that moment when I had to leave that PICU room with my son’s body lying on that big bed, all alone. The pain was just as horrifically raw as it was the day he died. Thankfully, Friday was not busy at work and a lot of people were out. I’m just not ready to give away Reese’s things. I’ve agreed to donate his crib and changing table to the church that he attended and have even gotten rid of SOME of his clothes. But going through it ALL, giving it away, selling it, whatever... just seems SO final… I just don’t think I’m ready for it. BUT, I guess it has to be done.

So, Reese has been gone for 20 months and some days the pain is just as new and raw as ever. Some days, its not so bad… But will the pain ever just GO AWAY??? NO… It’ll always be there... and it can be brought back up to the surface at any given moment. The hardest part is not seeing it coming, and having no control over your emotions at the time. You just have to go with the flow and try to be an inspiration to others. It’s not always easy – well, it’s NEVER easy, but it’s our duty as the mothers and fathers of these beautiful angels to see that they are not forgotten and that’s what I plan on doing!

I ask that you please visit Evline’s website (see below) and offer your condolences. I know how much I, and all the other parents of angels, appreciate your kind words, thoughts, and prayers.

Thank you, again, for visiting us! We appreciate it very much!!

Thursday, November 4, 2004

My apologies for not updating sooner. I know alot of you are eager to hear how the Run went.

When planning an event like this, you pour your heart and soul into it. My biggest fears were (1) that it would rain and (2) that no one would show up. Well, the weather was PERFECT but we only had about 100 people show up. We have managed, however, to raise almost $3000 to date and there is still money trickling in.

***Needless to say, we have tons of t-shirts left. If anyone is interested, please contact me and let me know. We're offering them for a $10 donation. We have adult L and XL and youth M.***

We had a wonderful group of volunteers - some 'old faithfuls' from last year, and the Key Club from Parkland High School. The kids were great and were a HUGE help. They did face painting, temporary tattoos, ran the moon bounce, worked water stations and the finish line, and so much more. I can't tell them how much I appreciate all they did!!

And, ofcourse, I always count on Robin Boger and Bob Goldstein to help me plan and coordinate the event! Thanks guys!! I love you both!!

Our special guests were Carrie, Connie, and Mike Horton, as well as Sylvia Brown and two of her daughters with their children.

October 29 was baby Jordan's birthday. I know it had to be hard for Carrie to come but she did anyway. (Jordan, you need to watch over mommie, OK? She looks too skinny...) After the event we all had lunch together and talked about joining forces next year to have a Run for Reese / Jog for Jordan!!

Karen, one of Sylvia's daughters, has a little boy who is 6 and was just diagnosed with Sanfilippo. She contacted me several weeks ago because she saw my name on a board at UNC-CH when they spoke with Dr. Muenzer there. They live in Salisbury and had to get up bright and early to get there. I'm glad my MPS families were there so we could share our stories with each other and show others that MPS can happen to ANYONE!

I'd be lying if I said I wasn't disappointed with the turnout but, as Steve keeps reminding me, I have to remain focused on the fact that, other than raising money, I also wanted to raise awareness. And that I did, to the best of my ability. I have to keep my head high, keep moving on, and keep telling people about Reese and his MPS. I will not give up - Reese is counting on me. So with loved ones beside me, and Reese in my heart, I will continue Reese's mission through heartache and pain, victory and loss, and be proud of myself, for I know I'm doing all I can!!

We will soon have run results and pictures on the Run for Reese website. I'll let you all know when they are posted.

Thank you, everyone, for you continuous support, your prayers, your love, and understanding.

Wednesday, October 13, 2004

I recently had another dream of Reese... here's what I can remember.

I was in heaven - there were no fluffy clouds or streets of gold, but I was told it was heaven. I was greeted by family members passed and I asked, "Is Reese here?"... then he jumped out from behind a couch with this big smile and huge brown eyes... he had tons of hair and he looked to be about 2 1/2 years old (which is almost his exact age)... He jumped out with his arms wide open and I picked him up... hugged him... and kissed on him. For the first time, he was in clothes - normal, little boy clothes! Normally in my dreams he's been in nothing but a diaper.

Another part of my dream, I saw myself, in a hospital bed, hooked up to life support. I sat beside this person (me) and was told, just hug her, let her know you're here... It was like in my dream, I was trying to figure out how I ended up in heaven - I didn't remember dying.

I also saw my pawpaw Yountz, pawpaw Baker, and even my dad (I thought - oh, he must have died and no one told me)..

Weird, huh? But the most amazing part was being with Reese... My dreams of him, however few and very far between, are getting better...

My first dream of him, he was in a diaper.. asleep, under a bed. When I pulled him out he was on his belly, I could see the scars on his back from his heart surgery - that's how I knew it was him. He was asleep because he was drugged. A doctor came in with a big needle of more paralytic drugs. I fought the doctor with all I had - I was NOT going to let him stick my baby again. Eventually, he did wake up and look at me. I remember being on my knees, looking up to heaven and thanking God for this dream.. I was holding my child again.

The next dream, he was wide awake.. still in a diaper, and still had scars from the surgeries and his central lines. But he was happy, smiley, and playing peek-a-boo with me. That was another brief one.

The next dream, was very short, very brief, but there he was... IN A DIAPER but all the scars were gone.. He was happy...

This dream, He's so normal.. in normal clothes, doing mischievous things like jumping out from behind the couch to scare me! What a wonderful illusion.. Reese living life like a normal little 2 year old boy should... My dream come true!

I've been questioning alot of things lately.. what DOES happen when you die? Some say if you're saved you're immediately in the presence of the Lord. That was my comfort, that Reese didn't have to wander around looking, seeking, trying to figure out where he was, being scared. I was told he went straight from me to Jesus. Then some say, that only when the Rapture arrives do the dead arise to Heaven.. So does that mean that Reese's soul / spirit are just out there.. looking, searching??? I hope my dreams are an indication that, where ever Reese is, he's well, he's happy, he's playing, and he hasn't forgotten me.

There are so many questions... so much to learn... about Christianity.. I love the Lord, I believe God sent Jesus to live on earth in perfectness to be crucified for my sins. I have Jesus in my heart, yet I don't live as I should.. I don't study the bible... my prayer life leaves much to be desired. I'm not afraid of going to hell... I'm not afraid Jesus doesn't love me.. I just don't understand alot of things...

Sunday, September 26, 2004

Today's entry is in honor of Jordan Robert Horton. Jordan took his last breath this morning and flew from the loving arms of his parents into the arms of Jesus. We love you Jordan and will miss you terribly. You have forever impactd our hearts with your sweet face and incredible strength.

This year's Run for Reese will also be dedicated to Jordan and his family.. along with the other MPS children who've flown away from us and into Heaven... I pray with our efforts that parents with an MPS child will have hope for the future of their children.

Please stop to see Jordan's parents and family offering words of encouragement..

Love, Shawn

Friday, September 10, 2004

I had every intention of updating today with good news… “I saw Jordan Monday night and he looks better than I thought he would… Carrie and Patrick are holding their own... and we finally have some answers….”

BUT, we all know Jordan... and the latest update is not good. Again, he is taking another turn for the worse. He’s requiring more oxygen, he has fluid in his lungs… man – you name it. Please go to his site and let them know you’re praying for them.

Another bit of sad news, strictly on my part, is that I had to see Steve off to Kuwait. I don’t know if I’d mentioned this before, but he’s in the Army. In 2009, he’ll have 20 years in and will be retiring. But for now, he’s still deployable and he’ll be gone for atleast 90 days, possibly 180. Needless to say, I’m going to miss him terribly.

So, along with our prayers for Jordan, I also ask that we keep Steve in our prayers. Let’s pray the BOTH make it HOME safe and sound!! Happy and Healthy!!!

Baby Jordan, your Aunt Shawn is glad she got to kiss your sweet face and hold your precious hand. You’ve got to get better, now – so you can come to the Run for Reese – we can also dub it Jog for Jordan if you want! You also have a very important wedding to attend next June. It won’t be the same without you.

Friday, September 3, 2004

Latest news on Jordan (1:35pm)

I just talked to Carrie and she sounds great! They are very optimistic.

First good news: They found an infection! FINALLY!! It's (ofcourse) a very rare bacteria but it was found at his old port site. The ONLY treatment for this type of bacteria is Septra. If we look back we can remember that there was a [possible] allergic reaction to that antibiotic several months ago. They are leaning more towards battling a little rash and itching to get rid of this infection. That is ONE main issue right now.

The other is the fact that he seems to have 2 immune systems that aren't getting along at all (major GVHD). It seems his blood still has his old cells and his organs have the new cells. This is the only thing they can figure to be the MAIN issue. So, they have made the decision to proceed with the Campath treatment for 4 - 5 days. The Campath will completely destroy all current immune systems. Once that is complete, he'll get a brand new transplant with new cells. They will continue him on the regular vent throughout this procedure just to be on the safe side. If he has a severe reaction he'll already be intubated. They plan to start the Campath either Saturday or Sunday. Also, his bilirubin numbers continue to go up and the Campath should help that, too. One doctor is even hopeful that after his transplant, we should begin to see signs of a NORMAL immune system within a month with a very low dosage of steroids. But remember, we are talking about JORDAN... who seems to do everything his own way! But, again, hopeful is a great word these days.

Carrie will be updating their journal sometime today and will probably have alot more details than me. Again.. thanks for all your prayers and concerns...

Have a great weekend!

-Shawn

www.caringbridge.org/il/jordan

Thursday, September 2, 2004

Update on Jordan (4:45pm)

OK.. I just talked to Carrie and her mother, Sheila... Jordan has just been switched back to a regular vent (yeah). But the fluid it still a HUGE issue. She says he very very swollen. They cannot figure out what's keeping all the fluid on his body. They finally cath'd him so they can measure more of what goes out...

The only thing the doc's can figure is that his immune system is the main problem. Carrie and the rest of the family will be meeting with several of the doctors tonight at 6pm to discuss an alternate procedure. They will talk about Campath..... a drug that will be given to Jordan for about 4 - 5 days to completely destroy his current immune system and then give him new donor cells.... This would kind of be like another transplant but no chemotherapy. However, there are possible EXTREME side effects so they don't want to give him any the first couple of days without the assistance of the ventilator. The purpose for the meeting tonight is to get ALL the pro's and con's before they make that decision. They say if they do nothing, they will lose him... but this procedure could also be fatal.

I'm going to visit them some time this weekend. Carrie told me she has a wonderful support system there and Jordan has the PICU waiting room full of people who love him. I was pleased to hear her voice over the phone.. she sounded much better than the last time I talked to her. Please continue to pray for this precious baby boy and all those who love him dearly... they need all they can get!!!!

Jordan.. listen to me... We want you here with us... heaven has enough angels!!! You rest, get strong, and when you're old enough I expect an apology for all this racket!!! We are on our knees, sweet boy, that you will fight this and get better.. that God will cover you with His healing hand and let you grow up happy, healthy, and strong... love, "Aunt Shawn"

Wednesday, September 1, 2004

Update on Jordan Horton

I just called the PICU Waiting room and spoke with Connie - Patrick's mom. She said the doctor has never seen a child get so sick so quickly AND recover so quickly. Now, he's NOT recovered, but he is stable. They've been able to lower the settings on the oscillator and are hopefully going
to step down to the regular vent within 24 hours.

I wish I had the capability to drop everything and go to Duke. But, I can't. Connie was there at Duke with Jordan when Reese passed away. She understands my wanting to be there but also understands I'm limited. I couldn't help but break down and tell her to how badly I wanted to be there and to tell Carrie I'm praying....

I know you guys are, too. And I wanted to let you know there is a little bit of light there.. we're still hopeful!

I'll keep you updated as I know more.....

www.caringbridge.org/il/jordan

Wednesday, September 1, 2004

Monday, August 23, 2004

Yes, I’m finally updating! I’ll try to make this brief, though!

Taylor and I had a blast at the beach. We swam in the various pools, played in the water park, jumped the waves in the ocean, played putt-putt, went to the pavilion, and just had a grand time! Once, while we were floating down the lazy river, Taylor, with his legs crossed and his head resting on his hands let out a big sigh and stated, “This is the life!” There were times, though, when I missed Reese terribly. Taylor and I were on the balcony one afternoon just looking at the ocean and we started talking about Reese. He said, in a very adult manner… “Remember when you told me Reese was going to die? I didn’t really know what you meant. I was just too young….” Remind you – he’s only 6 now! He was 4 when Reese passed away. I asked him if he understood now and he said he did. We both miss him every day. Taylor will never forget his little brother. I’m glad he was old enough to remember him.

Now he’s in the first grade and so far is a star student. He has spelling, reading, and math homework each night. He amazes me every day and I tell him all the time how proud I am of him. We’re not playing T-ball this fall, karate, or any extra curricular activities. When I asked him if he wanted to play he asked, “do I have to play a sport?”. So, we’re just hanging out at the house in the evenings. It’s rather nice not having to rush here or go there. He really enjoys being home and riding his bike and playing with Blake, his buddy down the street. As long as he’s happy, that’s what counts!

Since my last update, there has been some not-so-happy news. Jordan is BACK in the hospital and Kaitlynn lost her 13 year struggle to Hurler Syndrome. Also, Aunt Toni was cancelled for InVitro. She did not respond to the fertility drugs and they basically told her that her only option to carry a child would be via egg donor. Please keep Toni and Andy in your prayers as they start procedures for adoption. Somewhere out there is a baby meant for those two.

Right now, there are two other Hurler children being transplanted at Duke. Please visit Caterina and Evline and let them know you’re there!

I’m currently debating on whether or not to go to the MPS Conference this year. Can I handle it? Will I benefit from it? Will it just conjure up old, sad, regretful feelings? I don’t know… what do you think I should do?

Dear Reese, Hi, it’s me – mommy! I know you’re having a wonderful time in heaven. I hope you met Kaitlynn and showed her all the fun cool places to hang out. I’m asking you to watch over Jordan, Caterina, Evline, your Aunt Toni and Uncle Andy, Nanna, Taylor, and myself…. Keep us safe and keep sending us sunshine, breezes, rainbows and ladybugs. We love you and miss you. I hope you come to see me soon and show me again how happy you are. That’s what being a mom is all about… happy children! I’m sending kisses to heaven; I hope you get them soon! Love, mommy…..

Friday, July 30, 2004

Hi! Long time no update, huh? Sorry about that!

WOW… 194,000+ hits! You guys are awesome! Thank you so much for continuing to check in on us and see how we’re doing.

We’re doing great! Taylor and I going to the beach soon and its just going to be the two of us. Am I ready for this? Who knows.. but I trust we’ll have fun finding out.

Last weekend, my boyfriend and I made a special trip. (I couldn’t NOT mention it because if it had not been for Reese, that trip would have never been made.) Some of you may remember when I was asking prayer requests for a friend of mine named Sarah. She’s the one who contacted me upon running into Reese’s website after he’d already earned his angel wings. She’s been working on a scrapbook ever since! We talk quite often but never managed to meet due to her being in IOWA… but we knew one day we’d meet! Steve made that possible for us. I told him about Sarah the day we met… A week later, he suggested we fly to Iowa to meet her. He’s originally from Iowa and that’s where his dad still lives... so we met his dad for lunch while we there!

Meeting Sarah, Brent (her husband), Nash and Reid (her kids) was just another experience that Reese made possible. The second I saw them at the airport, she was like a new best friend. Her kids were so excited! They ran up and hugged me, grabbed my hand, and just made us feel like part of the family. Over the weekend, we learned more about each other – plus I got to see the scrapbook – and just hung out… We went to her mother’s house for a barbeque (that’s what they call ‘cook-outs’ up there) and we chowed down on some burgers and sweet corn. It was a busy weekend with early flights but it was so much fun. Thanks Reese – for bringing Sarah into my life…. Thanks Sarah – for being such a great and supportive friend to a stranger… and Thank you, Steve – for making that trip possible… I love you all and I thank God for each of you every day!

Yesterday, Reese would’ve been officially 2 ½ years old… A stubborn little boy chasing his big brother around…. We’d be potty- training, learning our colors and ABC’s, watching Dora and Teletubbies over and over and over…. We’d be building tents in the livingroom and making music videos… He’d be walking around the house in his little baseball glove begging Taylor to play catch with him…. The two of them would play for hours with all those Hotwheels and Thomas the Tank Engine trains…. Reese would be begging to sleep with his big brother in the big boy bed… All the would have’s and should’ve been’s can drive you crazy if you let it. I try not to think about all these things but it’s inevitable. You ALWAYS wonder where you’d be, what your child would be doing, what they could have become….

Dear Reese,
I know I’m right where I’m supposed to be… I know you’re having a grand time in Heaven... and I know you became exactly what God intended you to become. You know I miss you every single day... I know you see me staring at your pictures and stroking your cheeks... I know you hear Taylor and me talk about you... and I know you see the pride in my face when I tell others about you. I know you’re with me baby… and I love you soooooooo much. I haven’t seen you in a dream for quite a while.. I think tonight would be good…

Friday, July 9, 2004

Well… tomorrow makes 16 months since Reese went to heaven.. Some days the pain is as raw as it was the day he died… making it seem just yesterday. Some days, it seems it’s been an entire lifetime…. Then, some days, I feel almost (do I dare say it?) ‘normal’.

This morning I found myself reading up on ALL my Hurler kids. (there are 34 of them) and I find myself almost angry… I have nothing against the families of those whose children are still with them… but I just want to scream WHY NOT REESE? I read of these kids doing normal 2-year-old things… talking, playing, running, going to pre-school... and it just seems so unfair. Taylor and I miss Reese beyond words. Every time we see a small child with dark hair, we just smile at each other… we know what the other one is thinking.

Taylor and I, though, are moving along. Taylor has spent most of the summer in the water. He’s becoming such a good swimmer! I’m so proud of him. He and I are going to the beach the first of August. I’m pretty sure he’s gonna wear me out and I’ll need a vacation to recover from vacation! He’ll start 1st grade the week after we get back. He’s so smart, and he reads everything. He’s also enjoying the neighborhood, having so many kids to play with. He rides his bike with them, plays ball, playstation, in the sprinkler… I’m so grateful for him!

As for me, I started seeing someone a while back and we are getting along so great! He makes me very happy. He is an awesome father, too, so he and Taylor get along like peas and carrots! I’m not as busy in my photography as I’d like to be but I hope to get real busy soon.

I’ve also been busy planning the 2nd Annual Run for Reese. As noted above, it will be October 30 this year, and again, it will be at Tanglewood. We’re still working on getting some sponsors. So far, we have RBC Centura Bank, N. Davidson Barber Shop, Runner’s World, and Road ID. I can’t thank my co-coordinators, Robin Boger and Bob Goldstein, enough! The Run for Reese website will soon house more information about the event and I will definitely keep you all updated as we move forward.

I also hope to soon be an 'expecting' aunt… Toni and Andy will start their second (and hopefully successful) round of IVF next month. Please keep them in your thoughts and prayers as she travels from Connecticut to DC for the treatments and procedures.

Anyone who’s read this site or any caringbridge sites have heard the term “roller coaster ride”… the life of transplant always has its ups and downs. Upon reading a very descriptive story by Paige, Christopher’s mom, I really felt the need to share. Please go check it out… you’ll learn a lot… CHRISTOPHER JOSEPH

God Bless…
Shawn, Taylor, & ^^REESE^^

Monday, June 14, 2004

Another earth angel has gone to join our Lord...

My heart is heavy as I have to, once again, pass on the news that we lost another child to Hurler Syndrome. CHRISTOPHER went to meet Jesus on Friday.. June 11, 2004 at 4:00 pm. I never met this little one but he has a special place in my heart.. now, again, my heart is aching and has another missing piece. Christopher, like Reese, was only 13 months old. His life on this earth lasted only 410 days... 5 more than Reese's. I know how his mommy feels....

When Reese died, I had so much support from all of you... will you please send a small message to Paige and Joe.. tell them you're thinking about them... I thank you..

God Bless...

Wednesday, June 2, 2004

Well, I'm back from DC.. It was fun hanging out with my little sister again.. but as usual, it didn't last long enough. Toni seems to be holding up pretty good, considering the hell she's been through lately. But like I said, the two of us, we just wipe away the tears and dust, and get up to go at it again. Please, like I said before, keep her in your prayers... Pray they make it safely to Connecticut (they leave June 12) and that the next round of IVF is a success!

Another one of my Hurler babies is again in danger... WHY??? WHY??? WHY??? Little CHRISTOPHER is on the oscillator and they have no idea why he 'crashed' the other day. This is a very young couple and I pray that they do not have to live their life without their precious baby boy. I check on him every day and it breaks my heart to read their updates... I feel like I'm reading about my own little Reese...

BUT.. one day our Hurler babies will no longer suffer! We're on our way to a CURE!!! We hope to help make that possible... Last year's Run For Reese raised just over $5000 and we hope to top that this year. The date and place is set. The SECOND ANNUAL RUN FOR REESE will be held on October 23, 2004 at Tanglewood Park in Clemmons, NC. Now, we have to work to find sponsors, volunteers, walkers, and runners. Our biggest challenge will be finding someone to represent us and get the people out there! Keep us in your prayers as we begin the many challenges to make this a successful event!!

Thanks for all your support to Aunt Toni and still keeping an eye on us. Taylor and I are hanging in there and one day, all our troubles and sorrows we've suffered through are going to bring us to the most spectacular place!!! Love to all of you!!

Shawn, Taylor, and ^^REESE^^

Wednesday, May 26, 2004

It is with a heavy heart that I have to tell you all that Aunt Toni and Uncle Andy did not receive good news today. Her pregnancy test was negative. This is so dis-heartening. I hate if for her so bad. She wants children and has so much to offer. This is the kind of crap that makes it so hard to look at these teenagers putting babies in trash cans, or even the one's who keep their babies knowing they'll never be able to provide and care for that baby... So many children out there suffering, just wanting to be loved, and so many deserveing 'parents' who can't even conceive... It's just not fair!!! Toni and I have had many conversations when we wonder "when will it get easy for us?"... It seems everything that is just suppposed to 'happen' doesn't.. we have to work extra hard and pay such a price for the simple things... But, we always get right back up, wipe off the dust, and keep going... We're stubborn that way, I guess!

Please continue to keep Toni and Andy in your prayers. We do hope one day that she will be pregnant and be able to enjoy the bonding of a mother and child...

I love you sis! I can't wait to see you this weekend... Oh yeah - for all of you - I'm going to visit her this weekend. I hope my visit helps to cheer her up a bit...

Monday, May 17, 2004

Toni called me Saturday with good news! The two fertilized eggs were healthy enough to place back where they belong!!! They rate each egg from 1 to 5 (1 being the best) and one egg was a 2, the other a 4. She will have a pregnancy test on 5/26/04 so we all need to help out with our prayers!! Toni - Taylor told me last night that he's been praying for you!! We love you!!!

Thursday, May 13, 2004

Toni goes under, 8 follicles come out
3 mature eggs without a doubt!
Put in a dish with Andy's special men,
wait over night for a call and then...
The telephone ring brings good news to here
2 eggs were fertilized, can I get a big CHEER!?!?!
Let's pray this works and we get our twins
So we can enjoy them and not go thru this again!!!

YEAH!!! Aunt Toni will go back Saturday morning, considering the eggs are still doing well, and they will place them back where they belong. We can't take a pregnancy test until May 26th.. so we've got plenty of time to get down and pray. I do sincerely hope that this is God's will... to give Toni and Andy a very beautiful, healty baby or babies!!! THANKS FOR CHECKING IN!!

Wednesday, May 12, 2004
OK.. Aunt Toni went for her sonogram on Sunday and they found 6 follicles! With a 'good' three, they are retrieving her eggs this morning and will fertilize them today. We'll know very soon if they are good enough for implantation! Please pray that atleast ONE takes. At this point, we're not picky, we just want a baby!!! THANKS

Later today... My mom called and said Toni's egg retrieval was a good one. They found 8 eggs, 3 or 4 of which look really good!!! We'll find out tomorrow how many fertilized successfully!! Keep your knees bent and hands together! THANK YOU!!!!

Monday, May 10, 2004

Well, it’s been a while, I admit, AND I apologize.. There’s a lot to share so be prepared.

First of all, the Rainbow walk, despite the rain and chilly weather, was a success. There was over $64,000 raised for the Family Support Program and over $500 of that was in memory of Reese. It was a bittersweet event. I was fine until we did the balloon release and they played “Somewhere Over the Rainbow”… That’s when I lost it. But, I got it all out and managed to perk back up somewhat. We met Christy, China, and Brian there (Christy’s boyfriend) and we also ran into the Horton’s, the Bingham’s, the Schwab’s, the East’s, the Ramsey’s and most of our favorite nurses. I was wearing my Reeses Cup bright orange tshirt so everyone who ever heard of Reese knew I was his mom! I met Marian, ^^Princess MADI^^’s mother. Ofcourse, she recognized me from my tshirt… we hugged each other and cried for each other… Like I said, bittersweet.

It seems I can barely get on here for an update without having to send out a prayer request of some sort… Aunt Toni, as we all know, is eager to become a mother. She wants to enjoy the experience of pregnancy, delivery, and raising a child(ren) of her own. She and Uncle Andy are now in the process of InVitro (sp?). Unfortunately, she’s been having problems responding to the medication and she’s not producing very many healthy follicles. Without a good number of follicles and certain levels of hormone and other numbers, they will most likely cancel her. She’s wanting to go ahead and proceed with it anyway… hoping for the best. We will find out something this morning as to whether or not they will let her continue. The next cycle begins in July but they feel she may respond the same way with no success. She and Andy have to be in Connecticut by June 15 and there is not even a clinic up there... she’d have to come back down to DC to carry through the procedure. Please, pray for her, they pretty much said it would take a miracle…

Yesterday was Mother’s Day… Taylor and I went to breakfast, church, cleaned house, and met a few friends in Kernersville for the Spring Folly. It was hot, but Taylor had a good time! Church was especially hard for me yesterday… with all the dedications to mothers and everything. Don’t get me wrong, I feel so blessed to have Taylor, but missing Reese yesterday seemed to take front stage. I’m still new in the church, don’t know many people, and at one point I couldn’t keep the tears away… I felt all alone in a great big church… Some days are just like that… I can’t make the tears stop…

My Mother’s Day, however, was much better than Denna’s. She’s the mother of Niki, the little girl I mentioned in the last update. Niki passed away the morning of Mother’s Day at 5:41 am. Please, visit her page, and let them know how many of us care. What a terrible day to lose your child…

CHRISTOPHER JOSEPH is doing better, I’m happy to report, but he’s still not out of the woods yet. He’s still intubated and on dialysis but it seems to be helping. Please also let them know we’re pulling for them.

I just read Jordan’s update and it seems he’s running into more difficulties.

These people are my family. I hate to see any of them with an ounce of pain.

I guess that’s it for now… Thanks for checking in and as soon as I hear more news about Aunt Toni, I’ll let you know!

God bless!!

All our love,
Shawn, Taylor, & ^^REESE^^

Thursday, April 29, 2004

!!URGENT!!
!!URGENT!!
!!URGENT!!

Please pray for NIKI and CHRISTOPHER JOSEPH

!!URGENT!!
!!URGENT!!
!!URGENT!!

As all of you are aware, Reese was treated at Duke Children's Hospital from November 2002 until his passing in March of 2003. Because we lived in a 10x10 hospital room for most of that time, it was hard to feel any type of 'normalcy'. It was hard enough to get out to eat a decent meal, much less run errands, go to the grocery store, or get that much-needed haircut. Although the nursing staff was phenomenal, to say the least, they could not be at your child's bedside 24/7 - there were 15 other patients on 5200 they were responsible for as well.

The Duke PBMT Family Support Program tries to bring a sense of 'normalcy' in that they provide programs such as: The Best Buddy program, CellMates, ArtMates, Crisis Team, Salon Day, Community Meals, Pagers & Phone Cards, and many other activities for the children and their care givers. The FSP is totally self supporting and receives no funds from Duke University Medical Center. It's up to folks like you and me to help these families - and having been there, I know how much it is appreciated.

As an attempt to raise funds for these wonderful programs, an annual Rainbow of Heroes walk will be held on May 1, 2003. We will walk 5200 yards in honor, and in memory, of the children that have been heroes to all of us by living part of their young lives on the 5200 unit of the hospital. Everyone walking will hold a balloon with the name of a child that was transplanted and then the balloons will be released, revealing a rainbow in the sky! Each year, the walk also includes Tshirts, complete with the names of all the children transplanted from April to March. Last year, Reese had his own spot on the Tshirt.

I have contacted the Wachovia Matching Gift program to verify if it qualifies for the matching program. YES, it does... so any Wachovian contributing $25 or more to the Duke PBMT can have their contributions matched. As an added bonus, credit card donations are also accepted. Go to www.giftrecords.duke.edu. The screen is self-explanatory, but make sure you mark "Cancer Center" and under comments write "Rainbow of Heroes Walk" and your name, or Reese Coble's name. All checks should be make payable to Duke PBMT-04RH. All donations are tax-deductible.

To learn more about the FPS at Duke, you can go to www.cancer.duke.edu/PBMT/.

Thank you for taking this into consideration. I have personally set a goal of $500 and hope to top that!

Please contact me if you are interested in donating to this very worthy cause.

God bless....

Monday, April 12, 2004

There Is A Special Angel

There is a special Angel in Heaven
that is a part of me.
It is not where I wanted him
but where God wanted him to be.
He was here but just a moment
like a night time shooting star.
And though he is in Heaven
he isn't very far.
He touched the heart of many
like only an Angel can do.
I would've held him every minute
if the end I only knew.
So I send this special message
to the Heaven up above.
Please take care of my Angel
and send him all my love.

Author Unknown

Monday, March 22, 2004

URGENT PRAYER REQUESTS:

Many of Reese’s loyal readers have become prayer warriors for several other children… constantly checking on their wehpages and offering continued support. I have two very special children who are need of some serious prayers:

Baby Jordan’s website

Jordan Horton is a 16-month-old little boy who was diagnosed inutero with Hunter’s Syndrome. He was born October 29, 2002 and transplanted on December 13, 2002 – eight days after Reese. Of course, having our similarities I’ve become quite attached to this little fella. I check on him every day and yesterday I read some devastating news. Jordan has been home in Illinois since last October. He was flown to Duke Saturday via LifeFlight due to an infection in his vertebrae. I talked with Carrie this morning and it seems this infection has been going on for several months. He has an abscess on and around his spinal cord as well as one in his chest. They are not allowed to pick him up right now for fear of causing serious, irreversible damage to his spine. Currently, they are awaiting a full body CT and bone scan to determine the severity of it and 8 Duke Specialists are all conversing to figure out the best way to surgically remove the abscesses without causing any more serious damage. They have a room in PICU waiting for him incase he has to have emergency surgery. Thankfully, there has been no damage to his brain. Carrie and Patrick have been struggling emotionally and financially for over a year. They both lived in Durham, away from their home, for an entire year while they were here for his transplant. Now, they feel they will make a permanent move to Durham simply because the doctors and hospitals in Illinois are not equipped for a child as sick as Jordan. Please, please pray they get this infection in control and Carrie and Patrick find the strength and stamina to hold on to yet another roller coaster ride they never intended to take.

Linsey Efirds MPS Journey

Lindsey Efird is a tiny, fragile little girl who has MPS III – Sanfilippo. She was never transplanted; as I don’t believe that was an option for them by the time she was diagnosed. On February 13, hours after playing in her high chair and eating her mom noticed that something just wasn’t right. Lindsey has now been in the hospital for almost 6 weeks. During this time, she’s been on and off the ventilator, had a trach placed in her neck to help her breath and she’s currently in some type of coma for some reason the doctors can not figure out. She’s “out of it” and they don’t know when or if she will ever recover. They don’t believe it has anything to do with Sanfilippo BUT her condition only adds to the already difficult situation in a diagnosis and treatment for what she’s currently suffering from. They’ve had this case two other times with HEALTHY children… One child eventually died from it and the other finally ‘came back around’ about 4 or 5 months later. Need I go further? On her website you can see some pictures of her great smile and her big sister. You will have to register but it only takes a moment and leaving a message on the message board to let them know you’re thinking of them is worth more than you think.

I’ve received several emails this morning from concerned about Jordan… It only goes to show just how great you all are and how I know I can count on you when special prayers are needed for ‘my little kids’.

Thank you so much for being such great friends, standing beside me during some of my most difficult days on this earth. I just told Carrie I can’t imagine going through what she is and she says – You’ve been through worse – Honestly, I don’t know… We all have our different levels of trials and struggles and we never know how we could do what we do without GOD and, of course, folks like YOU!!!

Monday, March 8, 2004

In honor of Reese's one year anniversary in heaven, I attempted to write a poem. I'm no poet but I know Reese will love it simply because it comes from my heart.

I can’t believe a year has passed
since I held you in my arms
I only wanted to protect you
and keep you safe from harm

we tried our best to save you
we never left your side
but God had different plans for you
in Heaven, you should reside

the doctors said there’s nothing
more that we can do
so hold your child and tell him bye
for his life on earth is through

we all held our breath quietly
while trying not to grieve
silently praying to ourselves..
come on, baby, breathe

but it was not meant to be
a breath you could not take
your eyes were closed forever now
as our hearts began to break

you slipped away so quietly
as I kissed upon your face
go ahead, baby, it’s OK
and feel our Father’s grace

as your soul soared up to heaven
the emotions were very strong
this can’t be real, please tell me
that the doctors are all wrong

my tears they fell upon you
as I kissed your little nose
I sang you are my sunshine
then I had to let you go

I thank you, Reese, for all the days
you brought sunshine to my life
I look back and have to smile
at the joys and not the strife

for I am at peace now,
because I know that you’re ok
you watch over us from above
you protect and keep us safe

not too many people on this earth
can say what I can say
I have truly been touched by an angel
and he’s with me every day!!!

as the years go by I don’t expect
to be completely healed
my love for you is way too strong
the pain is way too real

but I know I’ll be with you again
up in that promised land
and we’ll talk and run and jump and play
FOREVER HAND-IN-HAND

Shawn Coble
proud mother of angel ^^REESE^^
January 29, 2002 to March 10, 2003

Happy “Heavenly” Birthday Reese… Mommy loves you!!!

Tuesday, March 2, 2004

Here we go again… ONE YEAR AGO TODAY Reese was put on the ventilator. We all – mom, dad, doctors, aunts, and uncles – had high hopes he would make it off the vent. At times, there were no doubts in my mind he’d make if off... others, I was scared to death.

As you know, Reese didn’t make it off the vent… instead he gradually went on the oscillator, more medication, then dialysis. His poor little body took so much abuse and still I kept praying for him to come off the machines. My prayers were answered because on March10 he did come off the machines. It wasn’t the exact outcome I’d prayed for but my son was finally free… finally free to fly with the angels he deserved to be with. Now, one year later, he’s still with me… he’s in my heart… always in my thoughts… he’s in my laughter and my tears… my joys and my sorrows… He’s with his brother at school… with his dad on his fire calls… with his Nana as she drives her school bus… He’s everywhere… his body is gone but his heart lives on forever in all of us who love him so much.

There was a time I was convinced that Reese would live simply because his work on earth was not yet done. You know, even though he’s not with us physically anymore, he’s still doing God’s work. I still meet new people who have been touched by his story, I still meet new Hurler babies on the internet, I am now in an incredible GriefShare support group with people that have different, yet similar, experiences to share. Without Reese, I’d have none of these things. Thank you, baby – You’re the best!!!

Two very important people that Reese has brought into my life are Robin Boger and Robin Tucker. I’m sure you’ve seen their guestbook entries! Robin Boger and I actually graduated high school together but didn’t know each other. She did not learn of Reese until after his passing but she contacted me, sent me cards, and helped SO much with the Run for Reese. Robin Tucker, as an employee of Hendrick Foundation, sponsored Reese his one and only Christmas and has kept in touch faithfully since then. Although she never even met him, she spoke at his funeral about how much he meant to her. I’ve met Robin Boger and we’ve become very good friends… and as for Robin Tucker, well, she was at his funeral and the Run for Reese but I never really had a chance to TALK to her. My birthday was a couple weeks ago and, much to my surprise, Boger arranged for Tucker to join us for lunch for my birthday. It was one of the best gifts ever and I didn’t mind so much having to have ANOTHER birthday. Thank you Robin and Robin for being such great friends and being there for me!

Oh – I have MORE good news!!! Aunt Toni finally got her DNA results back and she IS NOT a Hurler carrier… YEAH!!! Now, she and Uncle Andy can continue the IVF procedures without the fear having a child affected with Hurler! Please keep Toni and Andy in your prayers as they work on getting pregnant!!!

Another prayer request goes out for little Lindsey Efird… She’s a sweet little 6 year old girl with Sanfilippo. Currently, she’s fighting something and has been in ICU since February 13. They fear they may have to do a trach… let’s pray they don’t. She does have a webpage, but it’s not one you can leave guestbook entries on… it’s http://www.lindseysmpsjourney.org/about.htm. You can atleast see her picture. If you’d like their email address, contact me and I’ll share it with you.

Thanks, everyone, for your continued support and friendship. Thanks Reese for bringing all these wonderful people into my life!!!

God bless,
Shawn

Tuesday, March 2, 2004

Tuesday, February 17, 2004

Exactly a year ago today (how many more times will me entries start like this?) Reese was admitted back into the hospital after being out for only 2 days from his last admittance. He was laboring hard to breathe and after several attempts with breathing treatments it was decided to place him back on the unit. I remember my entry… We’re here for observation; I pray it’s only one night… But Reese never made it out alive.

All these feelings came rushing back to me on Valentine’s Day. I went to the cemetery with a friend who was delivering flowers to his own little girl who died 11 years ago - - on Valentine’s Day… I didn’t know how it would affect me until we left… As much as I thought I was being there for him, to offer him support… I began crying like a baby… remembering how, a year ago, I bought Reese and Taylor some Valentine balloons from the Gift Shop at the hospital. I also bought each of them a stuffed animal… Reese’s was a little white poodle with angel wings… I remember taking them home to the apartment and putting Reese and Taylor in the recliner to have their picture made together with their Valentine goodies…. Wow.. I had no idea that would be the last photo taken of them together. You could always tell how crazy they were about each other… Reese was always happy when Taylor was around and the same went for Taylor.

I could go on for hours talking about my anger and my longing to hold Reese again… but what good would it do… How many of us pray for happy, healthy children during our pregnancy? Well, now Reese is healthy and he’s happy, too! I think Tracie said it perfectly in her last entry (thank you Tracie for helping me see the light) how she said Douglas doesn’t long to be with us in pain and suffering because he’s content… and he’s happy and healthy. I guess I’ve looked at it more as my loss than Reese’s gain.

I know Reese is happy, I know he’s healthy, I know he runs and skips and plays, I know he can see and hear clearly now, I know he walks upright with no pain. He doesn’t even have any scars anymore. How do I know this? He came to me the other night in my dream. It was brief but it was awesome. The two of us were playing peek-a-boo. He was smiling and laughing. Again, for some reason, he was in nothing but a diaper but I didn’t see the scars like before. It was his way to let me know he’s OK and he’s happy right where he is. Of course, I know I still have many days ahead of longing to hold him, smell him, and kiss him… and I’ll be angry that he’s not here… I am human after all, and it is human nature to be selfish at times… But at least there’s that part of me that now knows Reese IS ok.. he’s happy and healthy, that’s exactly what I prayed for!!!

Dear Reese,
Mommy’s OK… I still love you.. I think I love you more now than the day you were born. You gave me something very special that no one can ever take away. I miss your big brown eyes, your crooked smile, and those cute little faces you used to make… I miss the way you used to jerk that paci out when you saw food coming or the way you used to clap your hands to say “more”… I miss holding you and comforting you and singing to you… BUT, I’m also very thankful that you shared all these wonderful things with me and gave me such wonderful memories to look back on… I love you baby!!! And I’m proud of how well you turned out!!! Keep visiting me and letting me know you’re OK… I’m sending hugs and kisses from earth... I hope they get there soon!!!

Thursday, February 5, 2004

When the lights finally go down for the night, the television is off and all is quiet...we think of our children who have gone before us. We wonder why they have gone, and when we will see them, hold them, smell them and kiss them once more.

When the sun comes up, and the day is new...we think of our children who have gone before us. We wonder if it is them that makes the day so sweet, the sun so bright and the butterflies fly. We talk to them, remind them of our eternal love, and send them kisses, wishes and dreams up to their high home.

When the day gets long, and traffic is thick, that song comes on and we think of our children who have gone before us. Those memories come flooding back, of pumps that beep, monitors that alarm and big doors that close behind us. It is painful to remember, but more painful to forget.

What is most important through these days is NEVER to forget the love we felt when all those things happened. God handed us something more precious than those noises, pains and fears...he handed us life. He did not send a warranty package, a return policy or an owner's manual. They did not come with an expiration date....

If they would have, would we have taken them?

I know I would have. Reluctantly at first I am sure, but my son was worth one minute with him on earth.

Just remember when the days get long, and the nights longer...and you feel as though God has left you there to die...He is there, and so is Reese -- They will both hold you, love you, and lead you where you need to go.

Jennifer Naeger (jnw_jnn@hotmail.com)

Ok - who is this Jennifer? Well, she's a lady I just met online thru Noah Prichard's website. She left this message (I changed a name to reflect Reese's) in his guestbook. I contacted her to see if she would allow me to post these beautiful words on Reese's site. She wrote me back and said she would be honored. She also shared with me a little about herself - how she lost a son at 3 1/2 months, and how she began writing a book. Don't you agree with me that she should definitely continue? You think this is good? Read the poem she wrote to her son on his 2nd birthday in the guestbook.

Thank you, Jennifer, for allowing me to share your words with all our Reesie Cup fans and for the beautiful poem. It was just like Reese's birthday...

Wednesday, January 28, 2004

Two years ago today, while outside playing with Taylor and his RC car, I started having contractions…. Realizing after a while that they weren’t going away, I thought I’d time them… they were four minutes apart and getting stronger and closer. My mother-in-law had just arrived home from work and I called Doug at the fire station. Our pastor’s mother-in-law had just passed away and Doug was supposed to go to the funeral home… so I drove to the station to take him his long-sleeve dress shirt. But the pains were more consistent and getting closer so he packed his bags and met us back home. From there we were off to the hospital….

I think it was around 7:30 or 8:00 when we got there. My water hadn’t broken but they put me straight into the LDR. I guess because it was my second delivery and I was due on January 30. As soon as I put my gown on, I lost my mucous plug. Hmmmm.. I guess we’ll be here for a while! They checked me and I was dilated 6 cm! WOW… it took hours and hours to get that far with Taylor!!! They called the midwife who promptly arrived and asked if I wanted her to break my water. She did say that if we did, that meant this was it! DUH!!! I’m not going anywhere!!! So, she broke my water, which was contaminated with meconium. DANGIT! That means that once he’s born they have to work on him... not lay him on my chest. But whatever he needed was what I wanted for him.

After thrashing in the bed and being in too much pain to “breath”, “walk”, and “focus”, I begged for an epidural. Once I finally got it, I felt better – but only for about ½ an hour!!! I remember telling people “I can feel it”..”see, I can move my legs”.. “hello people!!!”… but the next thing I knew it was time to push!

At 1:20 am, January 29, 2002, I began pushing… I remember NO ONE counting for me!!! So I counted to myself… I remember saying “It hurts… It hurts…” still trying to get the point across that my epidural wasn’t as sufficient as it should be! For what seemed an eternity – but only about 20 minutes, his head finally emerged… they told me to stop pushing and sucked everything out through his little nose that they could. Once they said go – ONE push and I remember feeling every inch of his tiny body slide out of me and letting out a WOOOO sound! The midwife barely caught him... he literally came out with a BANG!!! All I could say was “I want to see him”…. But I didn’t get to for long… they immediately began working on him. I remember Mary commenting how big the cord was and how big HE was… she couldn’t wait to find out how much he weighed…

I finally started hearing some faint little cries come from my newborn baby. He sounded like a tiny kitten… it was sweet to my ears but not sweet enough to stay with me…. He was headed straight to NICU.

They worked on me – taking care of my tears and what not. We finally got a call from NICU… Reese Daniel Coble weight 9 pounds 1 ½ ounces and was 20 inches long! Whew no wonder I tore!!!

The first time I saw him in NICU, he was lying on his back, finger on his chin, with an oxygen tent over his little head. He was too big for newborn diapers so he was already in a size one… He looked NOTHING like Taylor did when he was born. But I knew he was special!

Several days passed and I had to go home without my son. It was killing me. But I was back first thing the next morning. They were concerned with his rapid respirations… nothing totally new to Doug and myself, as Taylor seemed to have the same issues. Finally, on February 2 we took our baby home. No one seemed to notice the hump on his back, the patch of hair at the bottom of his spine, the cleft tushie, the oversized and mis-shaped head, and just passed off the two failed hearing tests due to his squirming. We had to promise to take him to his pediatrician on Monday morning and a follow up hearing test.

Our Monday morning appointment was with a strange doctor who didn’t really seem all that interested in Reese’s ‘condition’… so I guess I just passed it off as well. The hospital seemed to feel it was SO important for someone to see him but the doctor said he looked and sounded fine.

So, as promised we followed up with a hearing test. The audiologist was so nice and patient. Reese failed again… we go back for another one, this one is worse. We’re convinced he has fluid in his ears… I take him to the doctor to get it fixed… We go for ANOTHER hearing test… this one is worse! Every few weeks, we were testing and it just kept getting worse…

There are so many other details that led up to diagnosis but I don’t have time for all of it. I just wanted to share Reese’s birth story (again) and reflect back on that sweet, sweet baby that brought so many people together.

My mother called me and asked if I had any plans for Thursday night… was I going to have a cake or anything… All I could think of was “Who do I sing to? Who’s gonna blow out the candles”… then what? I only plan to visit his grave and take him some yellow roses – just like the one’s on his birthday cake from last year – and, ofcouse, some balloons…

Reese, Mommy loves you more than anything!! I miss you more everyday… In my eyes, you’ll always be perfect. I hope that Heaven is throwing you a big bash with lots of balloons, blocks, and balls to play with. You’re two years old now (do you still love that paci?) Do angels sing to you and rock you to sleep? I hope so! You know – I always wonder what we would be doing if you were still with us. You might be well enough to even have a party at home – with friends and relatives. But, that will never be… not on earth, anyway. Happy Birthday Reesie Cup… from Mommy, Daddy, Taylor, and everyone else who’s heart is hurting on this ‘special’ day. Please come visit me again soon! I LOVE YOU!!!

Saturday, January 24, 2004

I know Reese's birthday is still a couple days away, but I found this poem on the internet and thought it was appropriate.... God bless!

A SPECIAL BIRTHDAY

Please God, make them remember that
Today is a special birthday.
Make them understand that.
The memories don't go away.
Bless them with ears to hear and hearts that care.
Enable them to listen while I share.
Shelter them that they may never know my pain.
Help them to help me know that my child's life was not in vain.

Help them to remember Lord, that I wish
That my child was here
So we could still celebrate.
To understand that I still
Feel the nearness of my child.
To see beyond my smile and the
Words. "I'm okay."
Please God, just let one remember today,
Is a special birthday!

AUTHOR UNKNOWN

Thursday, January 22, 2004

With Reese's birthday only a week away, I've been at a loss of ways to 'celebrate'. I've had a few ideas and they're good ones but I don't think I'll have it ready in time.

One of my best friends, you see her name alot in the guestbook - Robin Boger - emailed me today and said that she has been working with her employer and Duke for a few months and now, 5200 will have some more laptops in memory of Reese Daniel Coble. Robin - I can't thank you enough... you've been so wonderful to Taylor and me and I just don't think that I could ever repay you. I'm just sorry you never got to meet Reese in person... As much as you love him now I know you'd love him even more...

Monday, January 12, 2004

This is a note I got from a friend of mine today. She said it was OK to share....

It's funny that red balloons never get to stay at our house... Meagan's birthday was yesterday so David picked up two mylar balloons for her on Sat and of course to avoid any conflict, he got Briana a regular balloon so she wouldn't feel left out. When we left my mom's house Sat night to take the balloons home, Briana said that since her balloon was red it needed to go to Reesie Cup so he could be a part of Meagan's birthday party too, so she sent it on up to him :)

Just wanted to let you know that Reesie Cup is still in Briana's heart - hope you had a good weekend!

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