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Friday, June 4, 2004 9:24 PM Eastern Well, the first week of college classes is over. I can't say Susie is overly thrilled with the classes, but she is happy to be back in the swing of things. Her academic writing teacher is a wheelchair athlete who has written a play about life in a chair after an accident. That will be quite a demanding class with all the writing, but she is keeping up and doing shorter assignments ahead of time so she will have more time for the longer papers. Susie has only had one speech class - likes the instructor but never was happy with having to give prepared speeches (improv is her forte!) Wendy, Susie's nurse, goes with her to her academic writing course. Jack will take her to her first few speech classes and then I will go. She needs someone to be with her to take notes and manage the books and supplies.
Therapy continues to go very well. Last Friday Susie moved all her fingers on her right hand. Alice gave her a sponge to work her grip. We decided a jigsaw puzzle would increase manual dexterity, so we spent the week putting together a 1000 piece Americana puzzle! Susie sorted out all the edge pieces, completed a number of major sections and then finished off the last twenty or so pieces tonight. Time for a new puzzle for next week!
In therapy today, Susie spent time outdoors in her manual chair. This will further strengthen her triceps as she learns to manuever slight inclines. She does great at forward, backward and turns already. This is the chair we take to class because it is shorter (without the motor) and therefore easier to move around in small classrooms.
Alice had me video tape for a record of her beginning skills to compare to another time as she becomes more skilled.
Within the next few weeks we will be closing this website and starting one where I can enter data and pictures more easily. In order to view the site you will need the log on and password. If you would like to be on the "allowed list" please drop me an email this week so I will have your address. I will make a "blogger group" and send you the information to log on to the site.
Thanks for your continued prayers as we approach the end of the first year of this life-changing experience. We could not do it without the knowledge of your support.
All our love,
Julie
jcarr1@twcny.rr.com
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Please also catch Judy Johnson's message of 6/6/04. In her own words. Thank you all for sharing your thoughts and suggestions...and most of all for sharing your love. All 4 of us Carrs will be grateful always. xo :) Jack
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Wednesday, May 19, 2004 12:29 AM CDT Happy Wednesday, everyone!
I thought you might like some details about Miss Susie's progress. Although she thinks these things are pretty unimportant, I will tell you anyway!
As you may or may not know, Susie has no real feeling (not as we know it) below her armpits and down the outside of both arms into her smallest two fingers on each hand. Now, keep that in mind as I update you on her progress.
When Susie first came home in August, she had justed reached her first goal of reaching her nose with her right hand (yeah - we didn't have to pick her nose for her anymore!!) Now she raises a volleyball over her head with a straight left arm, and slightly bent right arm and THROWS the ball to the therapist. She was not supposed to be able to ever raise her arms above her head, let alone do any kind of controlled activity in that position.
Coming home in August, Susie was strapped into her chair with a strap across her lap and across her chest. Now she has only one strap across her lap which the therapist takes off during therapy. We really only need it for bumpy rides! She sits up on the couch at home for extended periods of time (enough to finish the NY Times crossword with me on Sundays!), sits on a therapy table cross legged without support and does all her own weight shifts - which involve sitting up straight and bending over to her knees and getting back up. Remember - she can not feel any of her trunk muscles!
Her breathing is getting stronger and deeper, therefore her singing is also getting stronger. She doesn't run out of breath as much.
With assistance from the therapist, she is able to get up on her hands and knees and do exercises.
Susie can feel sensation in the form of pressure or tingling in most parts of her body. It is sometimes uncomfortable for her when we massage them because it feels like they are asleep - that kind of pins and needles feeling.
I have some great pictures of her at the therapist, but she does not want them on the website, so I will respect her request - but I would be glad to send them to you if you send me a private request!
Susie starts some college classes this summer and will enroll at SUNY Cortland in the fall.
Thanks to all of you for your continued prayers and support.
Love and blessings,
Julie
Friday, May 7, 2004 1:51 PM CDT Good afternoon angels,
It has been quite a while since I updated for you. Susie and I had a wonderful time in Virginia. The weather was warmer than at home so we didn't have to do quite so much bundling. Susie was able to go to some classes and spend some evening quality time with her friends.
Therapy continues to progress each day. A wonderful accomplishment is that Susie is now able to sit on the couch with us for extended periods of time. We have made a little routine of sitting together on Sunday afternoons to do the NY Times crossword puzzle! Susie delights in getting the answers - especially when they work out. We even finished one completely a few weeks ago. Her spirits remain optimistic and the warmer weather has been great for her. Sitting out in the sun has become a favorite passtime - although according to some of her medications, she is supposed to avoid the sun. But, how can we enforce that when it makes her so happy!
Next week we have an appointment with the vocational counselor to get her back on track with school. There is an English class being offered locally that we are hoping to get her enrolled in since it is a required course for just about anything.
Sarah is working a full time job, overtime and finishing up the semester. She has decided to take the summer off from school and just work lots to save up some money. She will go back to school part-time next year to finish up by May, 2005. She loves her job and is getting much positive feedback from her supervisors. She just bought a cute little Shitzu to keep her company in her new apartment and to use in a pet therapy program she wants to start at work. Now, if I could just teach her to balance a checkbook!
Thank you all for your continued prayers and messages. I will try to be more diligent about posting new updates for you. This has been a crazy time at work - but things are settling down now that the big concert is over.
Lots of love to all of you,
Julie
Thursday, April 22, 2004 7 a.m. Eastern A short update today.
Lots of people stop Julie and me at the store, on the street, throughout our day and ask: "How is she, REALLY?"
Well, she is REALLY good. One thing to remember is that above all Susie has never lost her personality--the accident took away use of parts of her body, but not her brain. Not her smile. Not her love of music. Not her smart-mouthy sense of humor. A faraway friend who had missed the memo asked online: "Is Susie still Susie?" Absolutely. With a smirk and a joke, she will kick your butt--just now she will kick metaphorically. But she will kick.
Susie continues to explore different herbal teas and still loves her ice cream treats every once in awhile. She continues to work hard in physical therapy. She's almost always cold, so we keep her bundled for the most part under an electric blanket and we keep the shoulder pack warm from the microwave.
Soon she will be the world's reigning expert on re-run episodes of "Friends" and "Full House," but I am happy for whatever keeps her mind active and engaged.
Buddies stop by, and every time they do I have to believe that if she weren't a special person people would have lost interest long ago. Well, she is special, and Julie and I are always grateful for those visits.
People ask what they can do. I say: Keep praying. My own timeline is for five years--my prediction is that Susie will be full-bodied and up and walking in five years. To me, anything sooner would be a wonderful bonus. Meanwhile, it's day by day, inch by inch, smile by smile.
Thank you all as always for being part of the journey.
Love, Jack for the fam
Saturday, April 3, 2004 3:26 PM CST Well, Miss Susie just returned from a trip to the mall with one of her friends (yup - they went solo!) Had to learn how to take the wheels off the portable chair and reassemble in order to go in a non-lift equipped van, but all went well.
Therapy has been going very well. Susie now does push-ups over the edge of the therapy table from a six inch block. She can roll from her stomach to her back all by herself and sits up straight for longer periods each day. There is some movement in her fingers when she goes from a relaxed "open" (fingers about an inch from her palms) and tries to close them against her hand. It is really small and she has to concentrate really hard, but they are moving. She can't feel them all move, but we can see the muscles moving. Yesterday she worked on throwing a ball with her arms extended above her head - an amazing feat for someone who couldn't reach her nose just nine months ago! She was pretty accurate making baskets that way too!
Last Sunday it was so nice here that we strolled (and wheeled!) to church rather than using the van. Not so tomorrow - it is getting rather cold already. They predict two inches of snow on Monday - UCK!
We are looking forward to our trip to Virginia to see all the SU kids, go to "Inherit the Wind" and see a rehearsal of another show. Of course - the warmth is what we are really looking forward to!
God bless you all in this special season of Easter. We thank you for your prayers and do see evidence of them working. Lots of love,
Julie
Thursday, March 25, 2004 10:03 PM CST Ahhh - spring has sprung. Miss Susie is feeling better, although a cough is hanging in there.
This week in therapy Alice has had her doing her trunk lifts with her body extended over the edge of the table. That's how strong she is getting! I also saw her go from a long sitting position parallel to the table, alternate moving her legs with her arms one at a time and scootching her butt until she had her legs over the edge of the table ready for Alice to transfer her back into her chair. Alice said she also scooted the whole length of the table on her elbows today. Of course, Susie doesn't like to brag, but I do!
Last Saturday Susie spent from 7:30am until 4:30 with me at school helping to run a solo festival. Her humor kept creeping out and many of the judges (who are friends of mine for many years) marvelled at her great attitude. One of them walked over to her at lunch and introduced himself saying, "You must be Susie." She quipped back, "What gave it away - the wheelchair!" Then one of the custodians remarked about her chairs "mag wheels" and joke with her saying he'd like to take a spin sometime. She said, "Here, let me get up and you can have a turn!" He made sure to tell me on Monday - he was so taken with her continuing smile and ability to joke.
I guess that's what fascinates people so. We tell them what a great attitude she has, but it's hard to believe until you see it yourself.
Tomorrow she will be accompanied by her friend Tom at the dinner theater that my high school theater group is doing. She came to rehearsal tonight providing some great feedback for the kids. She is getting more comfortable going out in crowds where people know her and are curious and where some don't know her and are curious. She is willing to be in situations where others have to assist her too. Lots of growth in lots of areas!
Thanks for your continued prayers, love and support. You remain an important part of our lives.
Love,
Julie
Thursday, March 18, 2004 8 a.m. EST SNOW????? And we got more snow?
Susie's strep is hanging on...and meanwhile she had had an ugly reaction to one of the antibiotics. Her voice is very raspy and it hurts her to talk right now. I hate to see her this way.
She peeked into her various email accounts and found a message from mid-February proposing a fundraiser organized by some of her Alpha Psi Omega (theatre fraternity) friends at Shenandoah--for March 20! It's frustrating when she misses messages like that. We're hoping to get down to visit the Virginia gang soon (maybe to check out Bodde Bauer's THE LARAMIE PROJECT and Alex and several others in INHERIT THE WIND) but with the strep plans are on hold. Yesterday I had a long and engaging talk with a former colleague at Cazenovia College. We mutually decided to scrap plans for a fundraiser dinner because the overhead would be too great. I made sure to tell her that the folks at Cazenovia have been nothing but supportive and generous to Susie and our whole family for the past nine months--absolutely no problem with that decision.
On a happy note:
The exercise table is all assembled, padded and covered. Looks great. Thank you, Mr. Platt.
Oops! Gotta go shovel! Be well, Friends, and thank you for your continued phone calls, visits, and cards. And did I mention prayers?
Love to you all.
:) Jack for the fam
Friday, March 5, 2004 5:47 AM CST Just a quick message - more updates to come this weekend, I promise!
Today five of Miss Susie's friends arrive from various parts of the east coast on their way back to Shenandoah. She has been anticipating their arrival all week. They are even going to "play" with her at therapy today. I will take pictures which will hopefully come out good so we can post them for you!
Have a great Friday.
Love,
Julie
PS For those of you who haven't checked the site in a while, a letter from Christopher Reeve is in the past journal entries.
Thursday, Feb. 26,, 2004 6 AM EST ********************
Florida photo update
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Please see the new pictures from last weeks' Floriday music adventure! Thank you, Tom Pirko!
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2/10
(letterhead: CHRISTOPHER & DANA REEVE PARALYSIS RESOURCE CENTER)
Dear Susie:
I had heard recently, from a few of your friends, that a Multi Band Benefit Concert was held in your honor to assist you after your recent spinal cord injury. I wanted to send a letter to share some thoughts.
We share a common bond in that we have both suffered spinal cord injuries and survived. I can fully appreciate the tremendous challenges you are facing. But it is not the end. We have already survived so much and we will both keep going forward.
The thing that always helped bring me back from the difficult and challenging times was the tremendous love and support from my family and friends. They gently and persistently reminded me that I am still the same person I was before my acccident, and that life is wonderful and so very precious. Your family and friends are there for you, too. I am certain that is evident by their supportive and encouraging ways.
We can take comfort in the fact that scientists around the world are making more progress than ever before, and many now believe that significant recovery will be possible in the next few years through cell transplants and other methods of promoting regeneration.
You'll learn new ways to do things you enjoy, and that you life holds more promise than you can imagine. With your strength and determination you will be find [sic] a way to go back to school and accomplish a degree. We've both been dealt a harsh and unexpected blow that has changed our lives dramatically. The main comfort I can offer you - and I believe it is very real - is that it won't be this way forever. Please don't forget to dream, and that nothing is impossible.
The best to you, your family and friends.
With warm regards,
Christopher Reeve
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Okay, I know that I'm more star-struck than many people, but how cool is this letter from Christopher Reeve? Susie continues to work hard, to enjoy the simple things in life like hot showers, her neck comforter, junk food and massage! She's getting good at playing volleyball with Jennifer McCall (hey, that rhymes!) in Physical Therapy sessions, she enjoys a nice cappucino once in awhile. She is coming back. Life is good. Thank you all for hanging in there with us and sending good vibes. We need them. xo :) Jack for the fam
Saturday, February 14, 2004 11:49 PM CST Good morning everyone and Happy Belated Valentine's Day! We certainly have been blessed with all your love these past few months.
I think we are all packed for the trip. Chaperone packets are done and equipment is tagged and ready to be loaded in ten short hours! It will be about 10 degrees when we leave! BRRR!! Even more incentive to pack quickly. I wish you could all meet the students that are going on this trip. They are the best kids a teacher could ask for!
Susie and I went shopping today and got some really cute clothes for her - not the sweats she has to wear around here to keep warm. Of course, it won't be really hot in Florida yet, but she can still dress like a teen instead of a work-out fanatic! Yes, we will be doing much of her therapy routine while we are on vacation. We don't want to lose any of that precious ground we have been gaining. Susie's new "manual" chair came Friday. It has special wheels that magnify her push. It is much more compact than the power chair, but she will have sore shoulders for a while until she builds up her muscles there too!
Well, I had best get a little sleep this evening (or should I say morning). I promise we will think fondly of you all this week - though we will enjoy the sun and fun ahead of us. Please keep us in your prayers and say an extra one for Jack who has to stay behind (at least he has lots of friends to keep him company and I believe a pagent on Saturday!)
Lots of love to all,
Julie
Monday, February 9, 2004 8:19 PM CST And another week flies by!
Miss Susie continues to work hard in therapy and makes little steps each day. When I think back on what she could do in July and what she can do now, it is just amazing! She even spends time doing therapy exercises (at the therapy place) sitting in her chair with no arm rests or seat strap! Five months ago she had to be supported with a top strap and sat in a much reclined position. Now she sits almost straight up in her chair.
Now she tells me she went into the lower kitchen cabinets by herself today and got out a snack - amazing feat since her chair takes up most of the open space by the cupboard! Then she backs out of the kitchen through a doorway about 4 inches bigger than her chair. I guess that is real determination
Our trip is getting closer! Warm sun and relaxation (well as relaxed as one can be with 18 teenagers and three performances!) Heard this morning that the weather will be between 2 and -15 on Sunday when we leave. Definite incentive to overlook the minor inconvenience of a 26 hour bus ride!
Last weekend Susie cut away from the apron strings for a while and accompanied Tom to the volunteer fireman's awards banquet at a college nearby. The weather was terrible and mama hen was a little worried - but you gotta let them fly on their own sometime. I think she was a little nervous too, but they had a good time and got back perfectly safe and sound. I forgot to send her eating utensil, so she improvised by weaving the fork in and out her fingers - worked just fine!
For those of you who want to meet up with us in Florida - we will be in Melbourne from 1:00pm on Monday, Feb 16 to 8:00am Tuesday, in Orlando from noon Tuesday (Sea World) until 6:00, hotel AmeriSuites Universal that night, Universal Studios Wed am and early afternoon, recording session at Full Sail Live Wed evening, Orange Elementary School Thurs am, Universal the remainder of the day (Hard Rock Cafe for dinner at 6:30), Wet and Wild Friday with our final performance at Festival Bay in Orlando at 5:00pm that day. Then back to Cortland after dinner at Festival Bay. I will have my cell with me - give me a call. 607-745-5700. We'd love to hook up with you!
Keep those prayers coming, please. They are obviously working in those little steps! God bless you all.
Love,
Julie
Monday, February 2, 2004 8:37 PM CST Wow, the weeks just seem to fly by!
We have finally settled into a routine with the therapy schedule, my teaching schedule, some playtime with each other (and very importantly - my every other week massage and weekends naps!)
Susie continues to make slow, but steady progress. She works so hard and is a true inspiration to the other therapy patients. There are very few complaints about pain from them when she is around! Today she was on her hands and knees and her therapist was trying to get her to do some diaphramatic breathing. Alice, the therapist, was behind her supporting her and said, "I want you to breathe from here - right where my hands are." Susie turned around to look at her and replied, "Hey, remember - I can't feel you! Give me a better clue!" Of course, the older woman next to Susie and the man on the next table just cracked up. Alice had to give in and admit she goofed! It's that humor that just keeps us going through the rough times.
The weather has been warmer today. I left the van door open so the sun could shine on Susie's face as I loaded her chair into the back of the van. She was in heaven! Tomorrow doesn't look so good, but we'll take them as we can here in upstate New York!
Florida is a mere two weeks away. My students are working hard. We have three performances lined up including a live professional recording studio video session at a college called Full Sail. How exciting for teenagers! They will each have a video tape and CD of the songs they have been working so hard on since late October. Of course, the thought of warm sunshine and lazy beaches is pretty appealing also! We hope to be able to see many of you Florida-ites while we are down there. I will send final itineraries to anyone who wants them (Jim and Gail, mom and Bill, Mary Ann and Jenn - you are already on my list!)
Keep the prayers coming and can you add two people to the list for us please. A former student who was in Sarah's class that I was the advisor for - Denny has always been in a wheelchair and is having many problems with his kidneys. He needs to get healthy in order to have surgery performed. Denny is a great kid who has had a lifelong struggle. The other is a young lady who I don't know who was originally diagnosed with pnemonia and ended up in intensive care with blood clots in her heart. They found out just in time. She is currently on a respirator and in very critical but improving condition. Jerika is a fighter, but needs a little help from all of us.
Love and continued thanks to all -
Julie
Sunday, January 25, 2004 6:56 PM CST OK, so I have been very delinquent this week. It just seems that once we get back from therapy each day and I get done what needs to get done, it's time to get Susie ready for bed, then I go to bed so I can get in at least four hours before getting up! Well, enough excuses and complaining!
Therapy continues to go well. Susie and her PT have built a great relationship which is so important when trust is a main factor. There is considerable "banter" back and forth during the sessions which last anywhere from an hour to an hour and 45 minutes! The office is a real patient-friendly place, too. The patients talk with each other and with all the therapists. Last week Susie played ball with an older woman who is recovering from foot surgery. Susie had to balance in her chair as she hit the ball back to the woman who was learning to stand on her feet with only one arm to balance herself. A really neat cross-generational thing to see. Of course, all the patients there just love Susie and compliment her on her progress each day.
OT is also going well as Terry spends some time each session using electrical stim to help Susie's fingers remember what it feels like to open and close. Her fingers are becoming less stiff as a result of this.
A new nurse has been trained, so if Wendy is ill then I won't need to stay home and miss more school (I feel like I am so far behind and unorganized!) Her name is Linda and she seems like a caring person like Wendy.
Saturday a massage therapist came to the house to work with Susie. This is another of the wonderful volunteers we have been blessed with. He will be coming each Wednesday to make sure Susie stays as tension-free as possible and to help release those wonderful endorphins that keep our stress levels down. He also worked with her hands and will eventually work with her legs. He is certified in hypnosis as well and may do some experimenting with that as he works with Susie.
On that same day our friend Regina, who owns her own salon and gave the first haircut to both Sarah and Susie years ago, came to the house to give Susie her first trim since the accident. Susie's hair continues to have good color and good shine. One of her friends (soon after the accident) had a dream in which Susie was walking--with long hair. So believe me when I tell you that Reggie just "evened up" the length and took off only about 2 inches!
Only three more weeks until we leave on our music trip for Florida. It will be a busy time once we get there, but the sun and warmth will be well worth it. (For all you in Florida who are keeping tabs on us, I will let you know exactly where we will be as our itinerary finalizes.) Susie is also looking forward to the trip - but not to the bus ride down there! It will be an adventure to be sure and hopefully help Susie realize that she really can do whatever she wants to - that there is a way to work around all the obstacles that may come our way.
I've been reading a book this week about a Biblical man named Jabez and his quest to ask for and accept blessings from God. I realize how many blessings we have been sent over these past seven months. I hope that I haven't missed any - but we are trying to accept all that God is sending us.
Thank you all for being part of our blessings. We truly appreciate all you do for us, including your prayers, messages, lurking, and offers of support.
God bless you all!
Love,
Julie
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PS from Jack--howdy from me, too. The new job at Syracuse University is wonderful and I love working on HELLO, DOLLY! nights and weekends at McGraw High School. I know it must be hard for Julie and me to detect the improvements in Susie's condition that are happening sssssssssssssssso slowly (or is it so lightning-fast?) but I can surely report that her attitude is extraordinary. Miss Susie is an Angel in America.
I am so proud to be her dad and so happy for her that it is only a matter of time before she reaches all her goals and all her dreams come true!
Sunday, January 18, 2004 9:19 PM CST Happy Sunday, everyone!
We have had a productive week at therapy again. Susie continues to get stronger in her arms, sometimes she can make her fingers and thumb move ever so slightly, and her balance is just amazing. Her PT's at Syracuse would be amazed at how she can sit up straight just by balancing on her arms!
I am in the process of making her 1/4, 1/2 and 3/4 pound weights to use at home. I bought BB pellets yesterday - didn't realize they were classified as ammunition! The PT said that was the best stuff to use because they are pretty dense so the amount of weight won't take up to much area to go around her wrists or around the stick. Boy, am I learning a lot of stuff!
We are still working on some independent course work for this semester. We just got the list of requirements from Shenandoah on Thursday. It looks like she may have to go in under a new program with more general ed classes since she will be technically out for a year. It means a lab science class in addition to her math, English composition, behavioral science and literature class.
Getting in and out of the house is getting to be much easier. Keeping the ramp clean in this weather, however, is another story! We will all be glad when the snow stops falling around here. Or at least some time for what is here to melt, so there is some where to pile the new stuff!
Hoping that all of you are keeping warm. Please keep us in your prayers - sometimes it is really hard to stay patient as we journey through this slow healing process. God bless you all.
Julie
Wednesday, January 14, 2004 7:01 AM CST Well, here I am home again for the second day in a row. Our nurse has been sick and the sub nurse was to be trained today. Susie says it's God's way of making me get some rest - but of course, I just bring my school work home with me and do it here!
No spectacular news to report. Alice (Susie's PT) continues to be very pleased with her progress especially in upper body balance and arm strength. She is now using 3/4 - 1 pound weights on her wrists and in her arm exercises - pretty good for someone who couldn't even scratch her nose six months ago!
Still waiting to hear from Shenandoah about what classes they will accept as transfer electives in general ed. Then we can get her started on a few classes to keep her brain alert! Although her sharp wit does seem to be unaffected by the accident. She comes up with some real good "zingers" every now and then when one least expects it!
Sarah returns from London on Monday. We haven't been able to talk to her much due to her schedule and the time change. Sometimes she loves it there and other times she appreciates what she has here in the US. She does admit that it is a learning experience of a lifetime. Jack will be driving to Newark to pick her up late Monday evening. We hope the flight will not be delayed as she and her friend are expected to be back in classes on Tuesday - a total nine hour drive from the airport.
Thanks again for all your prayers (and lurking - the site has had almost 50 thousand hits!). We love you and appreciate your willingness to take this journey with us.
Love,
Julie and the family
Saturday, January 10, 2004 9:37 PM CST Happy Saturday evening everyone!
Susie's PT has been progressing well. She is lifting weights on a stick to build up her triceps. I made her special gloves so she can hold the stick (oh, the wonders of velcro!) Each day Alice gets her up on her hands and knees and then on her elbows and knees when she gets tired. She is learning to control getting from position to position instead of just "crashing." We play with a beach ball while Alice helps support her from behind in a sitting position on the edge of the mat table. It is Susie's job to hit the ball and still keep her balance. She is getting very good at this - sometimes she spikes the ball right back at me! Soon we will have our own mat table at home so we can work on the weekends too. Susie works really hard in therapy. Other people there are amazed at her strength and perserverance. She really enjoys the therapists, jokes with them and even sings with the CD player (when she isn't complaining about the poor choice of tunes!) As Alice works with her, she talks about the muscles she is using and makes sure Susie knows what it feels like to do it correctly.
We didn't make it to OT this week. Our back door (yes, of the house) froze shut. Mark, one of the builders, had to come over and crowbar it open. It looks like the door will have to be reset once it gets a little warmer.
Susie has been cuddled up under a down lap comforter (thanks, grandma!) all week. Sometimes she wears three layers to keep warm. I even warm up her bed with her electric blanket so she can be toasty when I put her to bed! We will all be glad when the temperature hits 32 degrees again.
Sarah is having a great time in London. We don't hear too much from her because of the time difference. She was on IM with Jack tonight and has kept in touch via email. Her stay is just about half over. She will be coming back on January 19th and going directly to school that night.
I guess that catches you up on all the news. It is a little tricky writing during the week, but I will try harder this next week. As always, we thank you for all your prayers and good wishes. We know that God will bless you as you have blessed us.
Love,
Julie, Jack, Susie and Sarah
Monday, January 5, 2004 11:15 AM EST Hello to all and welcome to a new week.
This might be a dandy time to thank everyone who has been so supportive for so long. The weather and the schedule all coincided well enough yesterday for Susie to attend a church service at St. Mary's in Cortland with Julie and me. The love in that church is just overwhelming, as evidenced by many people rushing her wheelchair after the mass to hug her and wish her well. Mind you, in many cases these are people whose names we just do not know. One in particular stopped by our house with a gift of homemade raspberry jam and a gift of conversation. Though it might not seem like much, such little visits are precious to Susie and remind her that there really is a whole world of support out there.
It is amazing to me that she has kept so upbeat (though realistic) through the past six months. She herself would ask you first for your prayers...and that anything else beyond prayers is secondary. So please don't feel guilty if you don't have the time to sit with her in person. Speak with God and beg Him on Susie's behalf to help her come back to full health and full body. We're banking on all of you for this.
And as always, love to you all.
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Jack for the family
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Saturday, January 3, 2004 8:39 PM CST Wow! How this week has flown by.
The Carrs are getting Sarah ready to leave for London tomorrow. Susie and she have been spending some quality sister-time. Today the three of us piled into the van (with the newly adapted power chair!!!) and went off to the mall to pick up a few last minute items. It was so nice to have Susie be able to navigate herself around the mall. Many thanks to Steve at Medical Arts for all his help in arranging for the collapsible back so we can fit the chair on the lift in the van.
Therapy was cancelled on Friday - so no news to report there.
I had my first ever massage today - figured it would be a great stress reliever and some quiet "Julie" time. Man, it was way more than I expected! My shoulders haven't felt this good in years! I highly recommend massage for everyone. I have now made it a regular part of my routine.
Back to school on Monday. Susie will be starting classes with distance learning as soon as we get things all set up. Jack is loving his new job and will soon be going on the road to conferences.
We had a visit from a newspaper reporter today who was travelling around Cortland asking people how long they left up their Christmas decorations. We told her the outside lights would be staying up until Susie was up and walking again. I'm off to the craft store tomorrow to find little angels to add to the center of the bows (I will change the bow color with the season, but the angels will remain!)
We here at the Carr household wish all of you a Happy New Year full of lights, blessings and happiness. God bless you all.
Love,
Julie
Tuesday, December 30, 2003 9:50 PM CST Happy New Year (almost!)
Just a few things to report as far as how the outpatient therapy is going.
Now that we have the proper equipment, Susie is able to really concentrate on the particular muscle strengthening that she needs to progress. Yesterday she had a two-hour session which included two therapists getting her up on her hands and knees where she was able to support herself for almost two minutes! For those of you who saw her in Syracuse, not even able to sit up without a chest strap - this is simply amazing! Then she stayed in the position but resting her butt on her feet. There she was able to rock her torso back and forth to strengthen her side chest muscles.
She does a modified version of a sit-up, is learning to roll herself from back to side positions and is pulling up from a laying to a sitting position with a lot of her own power that they are teaching her to do from her stomach muscles.
I am making some special gloves so she can hold a pole in her hands and raise and lower it over her head. Next, we will actually have a therapy table at home so we can work on these things at home on a harder surface than her air chamber bed.
So, Susie is progressing inch by inch - just like the turtle who won the race. Watch out - rabbit, here we come!
Please add a special friend who just lost a nephew to your prayers. God bless you all as we enter into a New Year with new challenges, new progress and new blessings.
Love,
Julie
Friday, December 26, 2003 9:30 AM Eastern Hello to all and we Carrs hope that your Christmas season lasts all year long.
Here are my long-awaited and long-considered thoughts about our reluctant celebrity and living in a very public fishbowl. Funny, one of the long-time supporters who attended Susie's Dec. 6 benefit concert took my breath away with these words:
"You know, you don't have to tell us everything. We are not entitled to know a single thing about what's going on for your family."
Now, keep in mind that this kind woman said this with only the best of intentions...and she's right. She's a lurker as far as I can remember but she has obviously kept very close tabs on our goings-on, and she cares about us all. She's known our family for 22 years, all of Susannah's life and more. Moreover, she has found a creative way to contribute to the Susie Carr Ramp Fund that "pays it forward" for the young children whose lives she touches daily. But to be honest it nags at me that celebrity has a peculiar price. Late this summer, I walked the seven or so blocks from our house to the hospital to drop off a quick gift to a person in intensive care. I lost track of the times I was stopped by people who wanted to hug me and to wish our family well. I could hear Opie and Andy whistling in the background and I just about fell into the fishin' hole. People just love Susie. She has become a small-town superstar. Would I deny my daughter that, even if I would never have wished it upon her?
The turning point, I guess, is when our neighbor Jeff Gebhardt asked me shortly after the accident whether it would be all right for him to "go public" to the local newspapers about the accident and our bald need for financial help to fix our house to accommodate Susie's future needs. I gulped, I remember. I caught my breath. Here I was, deciding for the family...and there would be no turning back.
I said yes.
And that was it.
The four of us have opened our house, our hearts, and our emotions to anyone who happens onto the Internet and Susie's website. Tell me that's not a scarey thought. Part of me believes that it's all about the therapy and that in our darkest moments we are able to give hope to those who bleed in even darker places than ours with even greater need than ours. But part of me also wishes there were pockets of refuge and that we could go back to before, minding our own business and trusting that other people would mind theirs, too. All four of us crave oasis.
But I'm afraid that's not to be. Susie, Sarah, Julie and I are destined for who-knows-what, something that is obviously emerging before our very eyes. We've all said it, repeatedly, for the last 6 months:
Thank you for your sustaining prayers, your phone calls, your greeting cards, your gifts, your visits. Never think that any of these or your financial support go unnoticed or unappreciated.
Meanwhile, we'll swim in the fishbowl and work toward the inevitable day when Susie is back on her feet, whole again. On behalf of the family, yet once again, let me say a simple:
Thank you.
And:
Love to you all.
:) Jack
Wednesday, December 24, 2003 7:17 AM CST Good morning, all!
First day of vacation - oh how good it felt to sleep those extra two hours this morning! Susie has both OT and PT this morning, then off to the grocery store to shop for Christmas dinner.
We are hoping that Jack's brother and family will join us for dinner tomorrow. Last night we all attended a funeral service for "Grandma" Berta - a 93 year old woman who had babysat for Jack and Jerry when they were younger. For the past twenty-odd years she has been living in Spencer with Jerry where she helped care for his three children when they were young. Her death was not unexpected, but is still difficult to deal with, especially at this time of the year.
Jack is really enjoying his new job. Today he is tying up loose ends at the old one and looking forward to the rest of the week off. Hmm - should I get my "honey-do" list ready?!!!
Sarah got home Monday morning. She and Susie have had some good time together already. She will be home until January 6th when she leaves for London for a two-week three-credit course which includes a visit to CNN London.
We have enjoyed getting all your Christmas cards and reading what your family is up to. It's nice to be on the other end of the news too! Cards for us this year -maybe after the holiday. We are still figuring out how to do thank-yous to all you wonderful supporters. That could easily take us through the next five Christmas seasons!
Well,the porch lights are shining brightly and will keep shining through as Susie progresses little by little. I need to take a picture for you all to see. The girls are getting used to the idea of them being up until Susie is back on her feet. Susie still insists it is the first thing she will do when she walks - rip down those @!&* lights!
Have a relaxing and blessed Christmas eve as we all anticipate the coming of the eternal light.
Love and God bless you.
Julie, Jack and the girls
Sunday, December 21, 2003 9:51 PM CST Ok, so I've been negligent about writing to keep you folks posted. I do apologize. However, the creche is up and lighted so it shines all night long, and the lights are on the porch. Susie's room is finally getting organized and has its own electric power (thanks, Mike) and Jack and I celebrated our 26th anniversary (December 16th) by going out to dinner tonight.
Susie's friend Kate and her mom were here this weekend. We went shopping and had some great girl-time. They left early afternoon today but are back tonight after a problem with the car. So, Susie gets to play some more tomorrow with Kate while the car is getting fixed. She's not too sad!
Sarah comes home tomorrow after running into too much traffic out of the Bills/Dolphins game to make it tonight. Susie looks forward very much to having some time with her.
Two more days of school and then some time where we can all relax as a family over the holidays. Jack loves his new administrative job at Syracuse University - I think it was made for him. The drive is easier and the new people have been very welcoming.
So, all things considered, things are going very well on East Main Street.
I promise to try to be more faithful in keeping you guys posted. You are such an important part of our lives and our healing. May God continue to bless you as you continue to pray for Susie's recovery.
Love,
Julie
Thursday, December 18, 2003 6:32 PM CST Wow! It's Thursday already. This week has really flown by. I guess that's how it is when you are busy.
Susie's therapy is going well. She comes home with new exercises and routines to go through to build her muscles back one by one. Yesterday she had an OT evaluation. The therapist had evaluated her when she first came home from the hospital in August and was very pleased with the improvement in her arm strength. She can also feel Susie's nerves firing that control her fingers - so that is a really good sign of things to come. We have another PT session tomorrow. I go with Susie and play with another patient's 3 year old while the two patients work. Jennifer is also an SCI patient who has made remarkable progress. She is the reason we chose that particular therapy office.
The Christmas tree is up and lit. Tomorrow night I will put the lights on the porch garland (last year's had burned out!) I told Susie the lights are staying up until she walks again! Long story made short - I am unmercifully teased by my girls because I leave them up so long. Last year Susie pulled them down (probably why the lights didn't work this year) in May. So, maybe this will be real incentive for her to get moving since she won't be able to take them down from the wheelchair! I am going to find some angels to add to the garland where the Christmas bows are attached. It will go nicely with the angel tree!
Sarah comes home Sunday evening. Susie is looking forward to spending time with her and I look forward to having her be able to help me out with showers, etc. during the vacation. She will be leaving for two weeks in London in early January, so she won't be home long.
The Christmas season is my favorite - it always bring such a feeling of peace and hope. I guess that's why I love my white lights on the porch. So, let's all count our blessings and thank God for sending us the ultimate light to bring us that peace and hope. Wishing you all those feelings -
Julie
Monday, December 15, 2003 9:28 PM CST Ah, the joys of an unexpected snow day. It started out as a one-hour delay, so out I went to snowblow while Jack got ready to go to Caz (colleges never close!). Finished snowblowing and was wondering how people were going to get in to work. The roads were still a mess, to say the least of the sidewalks for the poor little walkers. Well, I went inside and was getting ready to go take my shower, and the phone rang. YIPPEE!!!
So, Susie and I got our day together. I spent more time clearing snow, but then it was shower time for Susie. We are getting this thing down. It now takes us less than an hour from bed to shower, including hair, dressing and into the chair. Susie can almost dry her hair by herself now, too! The county nurse came and was mighty impressed with our efficiency (and Susie's new room). Got some more tidying up done in the room. Have to wait for the new computer table to come and electricity to be done to do much more.
Time for bed now. We have a busy day tomorrow. I have to come home mid-morning to show the sub nurse how to use the shower chair and do the transfers, then Susie has her first real therapy early in the afternoon.
Hopefully I will get the white lights up on the porch soon. The joke is I don't take them down until the neighbors start teasing me (last year Susie took them down in May!). This year they stay up until Susie walks again. They will symbolize the light at the end of the tunnel. Susie says she is going to get really working - can't stand the thought of the lights being up longer than they need to be! Oh well, anything I can think of that will work!!!!
Thanks for your continued lurking, support and prayers. God bless you.
Love,
Julie
Sunday, December 14, 2003 10:42 PM CST Happy Sunday to all!
Well, the lights are on the Christmas tree, the living room almost looks like a living room and Susie's room is shaping up nicely.
The second shower turned out much easier than the first after I figured out how to transport her into and out of the chair without pants on (I usually grab on to the pants in the back) So I made a transfer belt out of an old towel that resembles a sumo-wrestler's belt - but, it works! So no laughing! Sometimes I think I need to go into the business of making adaptive gadgets - must be the left brain in me!
It's snowing like crazy still and Susie is hoping for a snow day so I can stay home and play with her. Actually, it would be nice because I could train the nurse on the use of the shower chair and shower so she can give Susie showers too. Evidently, there is some rule that she has to be trained. Of course, Susie could tell her exactly how to do it since we talked through what worked and didn't twice already. Oh well.
This will be a crazy week with two more PT appointments and an initial visit to the OT as well. I have started teaching my private lessons again - three nights a week from 4:30 to 8:30. I really missed the kids - it was great having them all last week.
Susie and I played Sorry again tonight - the little rat beat me for the second time! That used to be my territory - guess I have to relinquish the crown.
Little things are happening. I have to take the time to fill you all in. But, it is getting late and I have to be ready for school in the morning.
Thanks for your continued prayers. God bless you all.
Love,
Julie
Friday, December 12, 2003 10:44 PM CST Well, believe it or not, Miss Susie is sleeping in her own room tonight! Tonight she brushed her teeth and washed her face in the special sink with a lip that extends over the edge of the countertop so she can lean in far enough. She is even able to turn the water off and on by herself!
And tomorrow at 5:00pm the second coat of paint in the bathroom will be ready to be exposed to the moisture of - you guessed it - a shower!!!
There is no electricity yet, but I ran an extension cord for a light and her bed and Susie monitor and that will work just fine. Soon we will add the computer desk and finish putting up the window treatments and arranging clothing, etc the way it will be most functional for Susie. We will spend tomorrow rearranging the house and putting up the Christmas tree.
Susie had a few rough evenings this week - she just doesn't see the improvement she wants to see fast enough. Getting some normalcy back in the house (like Christmas decorations) will make her feel less frustrated. It's funny how little things like that can trigger unhappiness. Well, at least we can fix that issue tomorrow. If it warms up, I may even try to get the outside greenery with white lights and bows hung. I think I will add little angels to the centers of the bows this year.
Our first appointment with outpatient PT was this afternoon. I got a really good feeling from them and we met Jenn there (the young woman who was in an accident in April and is now moving her legs). She was very encouraging to Susie and her therapist Alice seemed to connect with Susie right away.
Please keep the prayers coming. Susie is saying a novena to St. Joseph and is wearing a pink blanket with froggies on her lap handmade by Grandma Along made with a statue of St. Joseph sewn right in! Anyone who wishes to join in is welcome.
God bless you all.
Julie
Wednesday, December 10, 2003 10 am Eastern Good news, bad news.
The good news is that we found the place in the middle of the boonies that specializes in fitting vehicles for accessiblity. The bad news is that someplace between the manufacturer in Florida and the distributor in North Carolina, someone failed to understand that a 37" wheelchair cannot fit into a 21" space. Ouch. So, Julie's tracking down phone numbers and working towards a reasonable answer. It may take more jockeying around with all the Carr vehicles before we get this settled.
Meanwhile, my task is to set up four distance learning college classes for Miss Susie for the spring, a project that has stretched on for some time now and close to closure.
We've thanked so many people by name here and now might be a good time to thank somebody by title. We don't know this person but we get occasional envelopes from the Syracuse area from "Mrs. Butterfly." She/he sends little paper butterflies anonymously along with carefully worded notes of cheer. Such random acts of kindness (not only from this kind person but from countless others) inspire us and keep us going.
Tomorrow I promise I'll tell you about our family's feelings about being so public. Big topic.
Love to you all.
*****************
:) Jack for the fam
*****************
Wednesday, December 3, 2003 4:30 a.m. Eastern Wednesday = Hump Day, and I'm in the Quest soon to retrieve my favorite 19-year-old and her mom. Just found out that our dear friends Michael and Dotty survived a very scarey and very frustrating car accident on their way back from visiting with two of their sons in NYC over the weekend. No injuries except to the car--but you could understand why news like that shakes me up.
Susie's floor is magnificent! I can't wait to take photos to post for you to see. Step by step, inch by inch.
My cousins Julie and Jill (think about that--how confusing?) dropped by with another special gift for Miss Priss. I'll let her tell you why it's special after she sees it for herself first.
Cortland-area friends have told us about an ad in the Cortland Standard advertising the benefit concert. We missed it. Can someone give us a date? Or a copy?
And is anyone interested in sitting at the table on Saturday checking ID's and selling tickets? Leave a voicemail at home and I'll set up a schedule.
Stay warm, everyone. Love to you all.
:) Jack for the family
Thursday, November 27, 2003 10:42 PM CST Happy Thanksgiving to all!
The family took a trip to Spencer today to spend the holiday with Jack's brother and family, aunt, and two cousins and their families. Of course, in typical Carr tradition, there was an abundance of food (both Patty and Jerry are chefs) and lots of good conversation. The portable ramps were great to get Susie on to the porch and then the strong guys lifted her up the last step into the house. She spent most of the time in the WARM kitchen as the older cousins and adults came to talk with her.
Lately she has been eating well - although she does have her days of ice cream and hot chocolate - and turkey, mashed potatoes and gravy and macaroni and cheese (yes, at Thanksgiving) are among her favorite white foods! I think this is helping her to get stronger. She can long sit now while I dress her in the morning - a big accomplishment for a kid who was a "ragdoll" just five short months ago. There is progress being made and we just have to continue to be patient and pray as the little miracles all add up. Susie has already surpassed the doctor's expectations and is still determined to make a full recovery.
Now we look forward to next weekend's festivities at Pomeroy Place. We are trying to convince Susie to sing with Nasty Habit. We know that a lot of people would like to hear her and know that her voice is still as beautiful as it ever was. Maybe a little prodding from the attendees will convince her to share her talent with her friends and supporters.
Sunday we leave for Rochester for the annual music conference. That will be a nice time for us. We are in a room with a roll in shower. I plan on taking a lawn chair and seat belt so I can actually give her showers each day! She is thrilled!
Remember how much we appreciate all of you and all your posts (and lurking) as you continue in prayer with us on the road to Susie's recovery. God bless you all.
Love,
Julie
Tuesday, November 25, 2003 10:37 PM CST Well, as you can guess, things are starting to settle down at the Carr household. Sarah arrived home for the Thanksgiving break late this afternoon and none of us have to work for a few days (although I will spend the morning at school tomorrow just catching up after the play and being in NJ for two weeks.)
I started thinking about Thanksgiving a few weeks ago - not the day, but the concept. There are so many things for us to be thankful for. Prayers to keep us strong, family to share good and bad times with, friends who come to visit and feel so comfortable they don't ring the doorbell - they just walk in, moving pinkys, "butt, leg and lower back" feelings, senses of humor that get us through the rough times, successful shows that keep our minds focused on good things, getting stuck and sharing laughter as we all struggle to get back up. The list goes on and on. Susie is alive, her brain is just as sharp (if not more) than before the accident and she is confident that once she has done what God wants her to, she will be up and walking again. What more could we ask for - we just need to be thankful.
As we enter into the holiday season of Christmas let's remember to be thankful for everything around us - the big things and the little things, the good things we celebrate, the not-so-good things that make us stronger. God bless you all - we Carrs are very thankful that we have you in our lives.
Love,
Julie
Sunday, November 23, 2003 7:30 AM EST Back to normal? What's normal? Well, time to get off the stage and back to cleanup.
Tom Barber, Susie and I shopped at the mall today and had a great discussion about strangers staring at anyone who looks "different," in this case sitting in a wheelchair. Tom is far more offended and upset than Susie--she characteristically chalks ignorance up to ignorance. She's developing a thick skin, which will of course make her able to cope with whatever is ahead.
The Shenandoah kids have decided to re-group and organize a concert in March. Stay tuned. It's an adventure!
Love to you all.
:) Jack for the fam
* * * * * * *
from Saturday:
Another opening, another show for the Carr clan--this time with Sarah and me on the sidelines entirely. In over 27 years of Julie and me working together, this production of JOSEPH (her second) is the first musical that she's done entirely on her own without any input whatsoever from mouthy me. And I must say it feels a little strange. But then, last month, it also felt strange that she had no input on the costumes for WAITING FOR GODOT. Our work has always been so intertwined. It was great, though, to be "just a member of the audience" in order to hear Susie sing the opening. Ironically, Julie feels uncomfortable even crediting herself as director because of the enormous contributions by her colleagues Ben Wells, Connie Starmer, Anthony Femino, parents of the huge cast and a whole district-ful of staff support.
Judy Johnson asks whether "the morning after" feeling is like post-partum, or like the cleanup after any huge event. Well, yes. And no. Live theatre is meant to be savored in the moment. Any number of photos, recordings, and memorabilia just doesn't hold a candle. You hold the experience--while you are experiencing it--as hard as you can...and then you let go. Do I love the Dana Merkur studio shots of Sarah and Susie in their THE SECRET GARDEN costumes? Oh, yes. Do we have Robin Jackson's double portrait of Sarah as Lily on our platerail in the dining room? Of course. You know I keep pencils and pens in a THE SECRET GARDEN coffee mug on the top shelf of our computer setup. But it's the live, shared, experience and the process of growth for the actors and crew that is essential.
Our first THE WIZ (Susie had just arrived, so Julie sewed costumes and played violin in the pit instead of conducting) was in many ways a spectacular success--but one thing I remember most is that it provided a showcase for the comedic and dancing talents of a young man, Shawn Platt, who had not found a whole lot of success in school otherwise...and who shortly afterward was killed in a car accident. At his funeral, friends remembered him as The Scarecrow, not as a troubled teen. Live theatre is that powerful.
Live theatre at any level of participation is transforming. I know college students and young professionals and parents of the cast of JOSEPH who mark their own most special memories by what they themselves did onstage all those years ago. They set up email addresses with their old characters' names, they bring their own little ones to auditions, they pull my arm during intermission to thank me for the golden time they had up there under the lights. And they become the audience for the new generations.
That said, there are several productions that Julie, Susie, Sarah and I have worked on over the years that I dearly wish we could bring back and savor all over again. For me, THE KING AND I at McGraw High School last year is one. I would give a whole lot of money and a toe or two for a video of that show, though I know that even the video would be only a shadow of the real experience.
To answer more fully, Judy, no. I suspect most couples don't give much thought to the next baby, and the next, and the next, and the next while they're engaged in labor pains. By contrast, the theatre folks I work with always have to think one step down the road.
Because it's live, it dies.
And there must be a new one.
Love to you all. Go see JOSEPH--Julie's parents and aunt and godfather will join us in the audience tonight. Go see JOSEPH--and clap for some remarkable work being done by some remarkable people. Go see JOSEPH--and congratulate Miss Susie for her courage and her talent. (Not necessarily in that order.)
Love you all, every single one.
xo
:) Jack for the fam
Saturday, November 22, 2003 7:30 AM EST Another opening, another show for the Carr clan--this time with Sarah and me on the sidelines entirely. In over 27 years of Julie and me working together, this production of JOSEPH (her second) is the first musical that she's done entirely on her own without any input whatsoever from mouthy me. And I must say it feels a little strange. But then, last month, it also felt strange that she had no input on the costumes for WAITING FOR GODOT. Our work has always been so intertwined. It was great, though, to be "just a member of the audience" in order to hear Susie sing the opening. Ironically, Julie feels uncomfortable even crediting herself as director because of the enormous contributions by her colleagues Ben Wells, Connie Starmer, Anthony Femino, parents of the huge cast and a whole district-ful of staff support.
Judy Johnson asks whether "the morning after" feeling is like post-partum, or like the cleanup after any huge event. Well, yes. And no. Live theatre is meant to be savored in the moment. Any number of photos, recordings, and memorabilia just doesn't hold a candle. You hold the experience--while you are experiencing it--as hard as you can...and then you let go. Do I love the Dana Merkur studio shots of Sarah and Susie in their THE SECRET GARDEN costumes? Oh, yes. Do we have Robin Jackson's double portrait of Sarah as Lily on our platerail in the dining room? Of course. You know I keep pencils and pens in a THE SECRET GARDEN coffee mug on the top shelf of our computer setup. But it's the live, shared, experience and the process of growth for the actors and crew that is essential.
Our first THE WIZ (Susie had just arrived, so Julie sewed costumes and played violin in the pit instead of conducting) was in many ways a spectacular success--but one thing I remember most is that it provided a showcase for the comedic and dancing talents of a young man, Shawn Platt, who had not found a whole lot of success in school otherwise...and who shortly afterward was killed in a car accident. At his funeral, friends remembered him as The Scarecrow, not as a troubled teen. Live theatre is that powerful.
Live theatre at any level of participation is transforming. I know college students and young professionals and parents of the cast of JOSEPH who mark their own most special memories by what they themselves did onstage all those years ago. They set up email addresses with their old characters' names, they bring their own little ones to auditions, they pull my arm during intermission to thank me for the golden time they had up there under the lights. And they become the audience for the new generations.
That said, there are several productions that Julie, Susie, Sarah and I have worked on over the years that I dearly wish we could bring back and savor all over again. For me, THE KING AND I at McGraw High School last year is one. I would give a whole lot of money and a toe or two for a video of that show, though I know that even the video would be only a shadow of the real experience.
To answer more fully, Judy, no. I suspect most couples don't give much thought to the next baby, and the next, and the next, and the next while they're engaged in labor pains. By contrast, the theatre folks I work with always have to think one step down the road.
Because it's live, it dies.
And there must be a new one.
Love to you all. Go see JOSEPH--Julie's parents and aunt and godfather will join us in the audience tonight. Go see JOSEPH--and clap for some remarkable work being done by some remarkable people. Go see JOSEPH--and congratulate Miss Susie for her courage and her talent. (Not necessarily in that order.)
Love you all, every single one.
xo
:) Jack for the fam
Thursday, November 20, 2003 9:53 PM CST Well, dress rehearsal is over and tomorrow is the real thing. Miss Susie is in her glory and singing like a lark! The chorus girls are so appreciative of her help and have let her know by offering sincere friendship. I'm afraid I may cry at the beginning tomorrow night when she sings - at least she is facing away from me and won't see me - then she would laugh like she always does when I get sappy!
So, for all those who are near to Cortland, we'd love to have you come see the show and please say hello afterwards. You are all so important to our health - spiritual, emotional and physical. We love you all!
Good night and God bless!
Love,
Julie
Wednesday, November 19, 2003 8:15 PM CST Okay, my turn. The music is cranked up LOUD since nobody else is home...and I'm boycotting TV for the moment.
Tonight I pulled the plug (with the agreement of the playwright) from the drama production planned for Nov. 24 that we've been working on for some time at Cazenovia College. An actor bailed last-minute, and we both thought it was better to save our energies for future projects. (Disappointing, but reality, and a great life lesson for my students.)
Also this afternoon one of the Shenandoah Conservatory students from Alpha Psi Omega called to apologize, but that the benefit on that campus has to be December 6, in direct conflict with the wonderful concert Terry Mingle has organized for Cortland. Another frustration--but yet also another good life lesson. Ya just can't be in two places at the same time...and look how many people want to help Susie?
We'll plan to jump down to Winchester anyway for a party on Sunday and to meet with professors and administrators the next day.
I'd like to echo Julie's and Susie's (and Sarah's, by proxy) sentiments about friends. ***THANK GOD FOR FRIENDS.*** No kiddin. An adventure like our family has gone through really clarifies a lot of things...among them, which friends have the capacity to be there when you need them. And who gets scared off by a little drama.
Deacon Steve and Cathy stopped by last night and brought Susie flowers leftover from Confirmation and some of the corniest jokes in the Western World. Friends. Nicole and Ashley came by for karaeoke and girl-talk joking around. Friends. Countless people phone, write, email, post to the website. Friends.
Right now, if I had to pick just one song to sing, it would be "What a Wonderful World," that old standard made famous by Louis Armstrong. Thank you all for hanging in there with us and for believing in the restorative power of prayer. This little chickadee is going to walk, then fly!!!!!
Love to you all.
:) Jack for the fam
Sunday, November 16, 2003 10:00 AM CST Happy Sunday morning all!
Yes, it has been a busy weekend so far. Those of you who know me know that the last two weeks before a show I spend time doing costumes until all hours of the night. Well, believe it or not - not too many to do this year and they are well on their way thanks to assistance from others. There is still much to do before opening night on Friday, including the rehearsals each night. Susie is having a great time with the show. Won't say too much to give anything away to those of you who are able to come see it -but you will be pleased!
Susie went to see Little Shop last night. She knew two of the cast members, including one who had acted with her two years ago in a SUNY Cortland production of Into the Woods.
Today we are off to grandma and grandpa Along's for dinner - white spaghetti for Susie, of course!
Still waiting for the new room to be done - oh, to be able to take a shower and wash hair there instead of in the little blow-up bed hair kit (anyone know someone who could use one - I am donating it to the cause!)
Off to Horseheads to see the Alongs. Have a great day and God bless you all - including the lurkers!
Love,
Julie
Thursday, November 13, 2003 11:30 AM Eastern Bruised Apples
(quoted from Susie Philpot, a Steel Magnolia, from Kentucky)
A few years ago a group of salesmen went to a regional sales convention in Chicago. They had assured their wives that they would be home in plenty of time for Friday night's dinner. Well, as such things go, one thing led to another. The sales meeting lasted longer than anticipated.
Their flights were scheduled to leave out of Chicago's O'Hare Airport, and they had to race pall mall to the airport. With tickets in hand, they barged through the terminal to catch their flight back home. In their rush, with tickets and briefcases, one of these salesmen inadvertently kicked over a table which held a display of baskets of apples. Apples flew everywhere.
Without stopping or looking back, they all managed to reach the plane in time for their nearly missed boarding. All but one. He paused, took a deep breath and experienced a twinge of compassion for the girl whose apple
stand had been overturned. He told his buddies to go on without him and told one of them to call his wife when they arrived at their home destination and explain his taking a later flight.
Then he returned to the terminal where the apples were all over the floor. He was glad he did. The 16-year-old girl at the apple stand was totally blind! She was softly crying, tears running down her cheeks in frustration, and at the same time helplessly groping for her spilled produce as the crowd swirled about her, no one stopping or to care for her plight.
The salesman knelt on the floor with her, gathered up the apples, put them into the baskets, and helped set the display up once more. As he did this, he noticed that many of them had become battered and bruised; these he set
aside in another basket. When he had finished, he pulled out his wallet and said to the girl, "Here, please take this $20 for the damage we did. Are you okay?"
She nodded through her tears.
He continued on with, "I hope we didn't spoil your day too badly..."
As the salesman started to walk away, the bewildered blind girl called out to him, "Mister...." He paused and turned to look back into those blind eyes. She continued, "Are you Jesus?"
He stopped in mid-stride, and he wondered. Then slowly he made his way to catch the later flight with that question burning and bouncing about in his soul: "Are you Jesus?"
Do people mistake you for Jesus? That's our destiny, is it not? To be so much like Jesus that people cannot tell the difference as we live and interact with a world that is blind to His love, life and grace. If we claim to
know Him, we should live, walk and act as He would. Knowing Him is more than simply quoting Scripture and going to church. It's actually living the Word as life unfolds day to day.
You are the apple of His eye even though we, too, have been bruised by a fall.
+ + +
Love to you all, lurkers and posters and prayer warriors and believers and disbelievers. And thank you to our dear friend Lori, who sent us a precious cache of totally unbruised apples from California.
xo
Jack for the fam
Wednesday, November 12, 2003 7 a.m. DST Waiting for Nurse Wendy, gearing up for the day. Lately Susie has had several doctor's appointments and JOSEPH rehearsals. Sounds simple, right? Wrong. Anybody who knows about wheelchairs knows about the finagling around to make it happen.
Last night Julie and Susie got "stuck" during a transfer, and I must admit I felt kinda like the cavalry charging over the hill coming to the rescue. Let me tell you that it's lucky that our Susie is a little peanut...it would be murder on Julie and me if we had to lug around a big ol' bruiser!
People have been so kind. I can't get my hair cut or have coffee at work or walk into one of the campus offices without strangers asking me how we are all doing. And they are so wise--they know that a spinal cord injury and fighting back after an accident involves the *whole* family.
Our extended families on both the Along and Carr sides have had mighty big issues to tackle since June 29--hysterectomy, blood clots in the lung, acute depression, gynecological surgery, a wedding, cancer...and an unexpected death. When I look at the picture of what we're all coping with--with a smile on our faces--I have to believe that we are doing something right.
One of those things, I know, is being grateful for random (and not so random) acts of kindness. A music teacher friend (Sister Ann, but that's a pretend name) comes to work with Susie on Thursday afternoons. One example of unbelievable kindness. A co-worker (Val, of the cobalt blue bowl and the root beer floats) recently gave me one of those little amulets inscribed with the word: "Healing." Unbelievable. Another confides that she wakes up every morning praying for Susie. What could be better?
We have a whole world full of support, and believe me when I tell you that we need it and are grateful for it.
Lurkers, chime in. We want to hear from you. Love to you all. xo :) Jack
Friday, November 7, 2003 6 PM CST From Jack on Friday:
It's another Susie and Daddy night, and this time we're watching DVD's--Bernadette Peters in Concert and Robin Williams on Broadway. First we cry, then we laugh. Golden time. Nicole came over to hang, not watch, and we always love to share time with her, too. Later, we'll have white spaghetti.
***Note to Shenandoah friends: Ask Bodee to get in touch.***
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From Julie on Thursday:
I am so sorry that it has been so long since an update. This is a crazy week for me at school. My first concert was Wednesday, I have a student teacher and we are hosting a huge music festival with 300 kids from 47 schools this weekend (and guess who is the overall chairperson! - oh, what we music teachers do for the good of the arts!!!) Anyway, the concert went well. Susie came to listen and was able to see many of her well-wishers. Today she had a voice lesson (thanks, Ann). It was so neat to hear her singing fun songs and enjoying her voice again. She will be going to play practice with me tonight. She sings the opening number of the show - it is well in her range now and doesn't require a lot of breath support, which is the part that is still hard for her.)
Did I tell you she can do some of her own weight shifts now and she is getting more vocal (that's our Susie) about directing her therapy with her nurses. Her upper body is getting so much stronger. Yesterday she was able to help me get her into the car by leaning on the slide board so it didn't slip as we slid into the car.
We are having a few problems with her blood pressure rising for no apparent reason at night. It seems to be better if she lays only on her back instead of her side. It could be the medication she has to take to clear the c.diff infection. No one seems to know for sure. So, that has made sleeping hard the past few nights.
We are looking into having her do some on-line, distance learning classes in January. Need to keep that mind working!
Thanks for the continued posts - Susie does enjoy reading your notes. And more importantly, thank you for all your prayers. Susie is getting stronger - we know the prayers are working.
Monday, November 3, 2003 6:51 PM CST Yes, I know it is Monday, but a busy weekend is a fun weekend!
Sarah was home so she and Susie had some nice sister time on Saturday. We all went out to dinner Saturday night - a spaghetti supper benefit for a co-worker of mine. It was a great meal and a chance to see lots of people who care about Susie too. Of course, Susie had spaghetti with butter and cheese only - no RED sauce!
Sunday Sarah made a cake for Susie, we all had lunch at Friendly's - Susie's favorite food there is a crispy chicken salad with no tomatoes. A number of her friends came to visit later that day and many phone calls from Virginia perked her right up.
Medically, things seem to be settling down again. She is plagued with cold sweats and a rise in blood pressure at night which I am attributing to her medication for the return bout of intestinal c.diff infection. This should be done soon and then we will be in real good shape.
Play practice keeps us both busy evenings during the week. Susie comes with me every night except Monday for now. She sings along with most of the chorus songs and will be doing her song on stage this week.
We are looking forward to starting outpatient PT and OT once we get the approval from her doctor next week. The plan is to try to start as soon as the play is over. That will give her more progress with keeping her muscles toned since she will be able to use the strength machines.
So, things are going well. It is great to have her home and getting back into a routine. Please keep those prayers coming.
Love,
Julie
Friday, October 31, 2003 8:01 PM CST Happy Halloween!
Sorry about no update yesterday, I thought Jack was doing it.
So yesterday - let's talk about Susie's sense of humor. I got home and she said, "Mom, I made kind of a mess here." It seems that when she moved back from the computer, she knocked the mouse on to the floor. On the way, the mouse hit the bowl of gummy bears on her lap and they went on the floor. As she turned her wheelchair, her foot caught the wire from the speaker we hooked to her DVD player and that went on the floor (are you counting things on the floor!). Then the blanket from her lap fell, sending the TV remote across the room - you guessed it, on to the floor. So, when I called to check on her she couldn't get to the phone because she didn't want to run over all the things on the floor (remember our living room has just enough room for her to manuever her chair since the whole room is in half the normal space.) No, this is not the end. She bent over to do a weight shift and got stuck! Took her a while to push herself up on her arms, which are now a lovely shade of black and blue! She was laughing as she related the entire story to me. Guess she wants to prove that she can be by herself and manage even in the most adverse of conditions!
Today she carved a pumpkin (or at least scooped out the seeds) with her nurse. We went for a walk with me around the block - looking for the sun to bask in. Then we handed out candy to the trick-or-treaters. All-in-all a much less exciting day than yesterday!
We have a busy weekend planned including a trip to the shoe store, a spaghetti supper benefit for a co-worker of mine, a visit to a great pumpkin patch in Candor, NY, children's liturgy at Sunday mass and a visit from Sarah to help celebrate Susie's birthday.
Things are going well. Please keep us in your prayers. Thanks for all you do.
Love,
Julie
Wednesday, October 29, 2003 10 pm Daylight Savings Time An adventure! Went back to Upstate for lab tests today. The wait (just the 3 of us, all alone) in the waiting room got so ridiculously long that Susie asked me to color a coloring book page for her...and then proceded to critique my color choices and coloring technique!!! LOL
And then she started singing. All the nurses and technicians remarked at how beautiful she sounded. The receptionist, Grace, was laughing up her sleeve--evidently, most people in her waiting room are not only more patient but also a whole lot less vocal!
I think you know that Susie is attending rehearsals for Julie's production of JOSEPH AND THE AMAZING TECHNICOLOUR DREAMCOAT and singing as much as she is able. Great idea, I believe.
We're planning a full semester of distance learning courses (religion, math, literature, and composition) for the spring in hopes of getting her fanny back to Shenandoah in fall, 2004.
The room looks great so far. The shade of blue paint that Julie picked out is perfect, and tonight the three of us were unanimous in the choice of formica for the new vanity.
Some of her friends are plotting to get her out Trick-or-Treating. We'll see.
Love to you all and keep praying for us.
Love, Jack for the fam
Tuesday, October 28, 2003 9:21 PM CST Well, today Susie and one of her Susie-sitters, Chrissy (of the famed P&C bottle and can drive) took a field trip to the corner grocery store! It was really nice for Susie to get out of the house on her own and try out her power chair - with the new back - around town.
Then she went to play practice with me this evening. She sang along with the cast during most of the rehearsal and then sang her solo with the pianist at the end. She is still a little self-conscious because she doesn't think she is singing well. I think she sounds beautiful and that it is doing her a world of good to be back in the theater. Of course, after her ONE YEAR of experience she has many directorial comments to add! Some things never change!
As always, all our love to you and our sincere thanks for all you are doing.
Love,
Julie
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Wed. a.m. update from The Dad
A couple clear-ups:
1) Susie's birthday party at Shenandoah was premature: her special day isn't until Nov. 2--so, dear Terry Mingle, you haven't missed it!
2) The essay posted early this summer about being brave enough to excel is NOT written by Prof. Bodee Bauer but excerpted from the first inaugural of Nelson Mandela. Bodee tells us that she gives this piece of writing to her students without attribution and asks them to wonder who MIGHT have written it.
3) Susie's singing voice is precious. She may feel self-conscious about it, but those of us who love her love her voice and think it is a rare gift.
Be well, you all, and as Julie says thank you for your continued good wishes. Love--xo :) Jack
Monday, October 27, 2003 10:16 PM CST A great weekend was had by all. Two of Susie's friends met her at the dorm with a "Welcome Susie" sign made from sheets of typing paper stapled together. Then they wheeled her over to the conservatory where another ten or twelve friends came running (really) out of the building shouting to her. Many hugs then ensued! Jack and I left them alone to have a birthday celebration and some private Susie and friends time. After the show, more friends stopped by to say hello and Jack and I had the chance to talk to the famous Bode who came to see her. The trip home was long and rainy - Susie and I slept most of the way home leaving poor Jack to keep himself entertained by singing multiple verses of Christmas songs.
Thanks for all your prayers. Susie's mood is on the upswing again thanks to friends and prayer companions. We love you all.
Julie
Saturday, October 25, 2003 3:33 PM CDT On our way to Virginia where friends, teachers and a birthday party await. Although it will be bittersweet as Susie has to leave her friends at the end of this whirlwind tour, she is anxiously awaiting the much needed break.
Be back late Sunday (early Monday morning!). God bless you all.
Love,
Julie
Thursday, Oct. 23 noon Eastern Thursday early evening from Jack:
Susie is undeniably going through a sad time while she heals, but I don't think any of us would call it excessive. If and when she notices any kind of improvement, anywhere, I think she will take advantage of that and move right along. I think that what she is feeling and thinking is all very understandable to all of us standing by. That she calls out for prayer tells me that she wants to be healthy and that she is looking forward to that inevitable light at the end of the tunnel.
I hope this doesn't sound redundant: thanks and love to you all. Trust me when I say we mean it from our hearts.
xo
Jack for the family
* * * * * * * * * * * * *
Thursday early morning from Jack:
Parents will understand about those golden, crystalline, rare times when adult and child hold their breath together. Such--briefly--was last night. Folks, this is one amazing and particular young woman we stand witness to. In the midst of her own disappointment about her medical condition last night, she fielded a phone call from a young girl and counseled her through a very ugly situation, a situation that potentially puts Susie out in the cold. Susie's kindness and understanding astound me. When you pray--and I hope you do, in whatever particular way you pray--pray for her recovery and pray with unlimited joy for that inevitable day of full health.
We will bring her back, and we will all be dancing the "I Told You So" dance. I'm thinking the Imperial Room at the Hotel Syracuse. Join us?
* * * * * * * * * * * * *
Tues. evening from Julie:
I have a special request from Susie tonight (sorry she can't write herself, I just unpacked her special mouse tonight and couldn't see well enough to connect it to the computer tower!) She is feeling down in spirit and would like everyone to pray to God to keep her spirits up. Now, you know that Susie doesn't ask for much, so this must be very important to her. So everyone - that is your mission for the next few days.
Daddy and Susie had a chance for some nice quality time with each other tonight while I was at play practice. It's nice that Jack's schedule has settled a bit so that he can spend some time with her before she gets exhausted at night.
That's about it for tonight. Remember your special task. As always, God bless all you angels who continually hold us in your care.
* * * * * * * * * * * * *
Tuesday, October 21, 2003 9:33 PM CDT Tuesday night and things are getting back on schedule. Those of you who know me know that I am a stickler for things being ordered and planned. Susie is like me in that respect. Both of us will feel better once a routine is established. It is within sight!
Susie is catching up on her sleep as much as she can with the construction going on. We have a nurse five hours a day and then wonderful friends who spend the remaining two hours until I can get home from school. Many others have volunteered to help - hang tight - we'll call when we need you.
Tonight Susie came to play practice with me and sang her song for the first time. I was very proud of her and thought she did a great job. She was disappointed in her voice and sad that she can't be up there dancing. It will be a few rough weeks, but a process that will be important for her to go through.
This weekend we will go to Shenandoah to see a children's show that many of her friends are in. They have planned a birthday party for her after the show. What a wonderful group of kids!
Keep Susie in your prayers. She is really trying hard to understand why this happened to her and what she is supposed to do now. It is a difficult time for her.
Thank you and God bless you.
Love,
Julie
Sunday, Oct. 19 2 pm Eastern Home again, home again, jiggity jig. Church last night was another homecoming, and today's pancake breakfast was amazing, too. THANKS to JoAnn, Cesca, the Cortland Elks, and Quik-Print Service. We're onto the next page in this adventure, looking forward to finishing the renovations to the house and planning for the spring semester. Susie has a busy week ahead, and as always all of us Carrs and Alongs are grateful for your words of encouragement along the way!
Thursday, October 16, 2003 5:25 PM CDT Another wonderful two days of therapy. Susie is definitely taking advantage of learning what she needs right now. She is getting so strong - arm wrestlers beware! She does most of the work in sitting up from a slightly raised bed to move into the chair. In therapy she is able to do all her leg stretches with minor assistance in positioning the tool around her foot and holding her knee so it doesn't bend when it's not supposed to.
Her power chair was fit to her today. It is much more comfortable now and she doesn't feel like she is going to fall out!
We are getting ready to watch a movie and then a few TV shows. Then bedtime for the Carr girls. Two more nights in New Jersey and then Cortland here we come!
God bless you - keep those prayers coming.
Love,
Julie
Tuesday, October 14, 2003 7:20 PM CDT *************************
Wednesday update
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Hello to all and special THANK YOU to those amazing friends at the Cortland City School District for the recent bake sale and raffle to help support Susie's astonomical medical costs. We *think* we might have gotten good news from Social Security this morning--her case has been taken out of limbo and is now on the front burner. We're trying to make reasonable plans for her care at home until we figure out the next step to take for her to reach more and more independence and reclaim more and more use of her body.
As you would imagine, she has retained her sparkling personality. I imagine she has caused many of those Kesslerites to scratch their heads with her quips and her flashing smiles. The theatre production that Julie mentions below is WAITING FOR GODOT, dealing with, among other themes, faith and patience and expecting Something Big.
Hmm.
Ya think?
*************************
Susie continues to do well in PT and OT. Today they did the final measurements for her manual chair, so when she goes back to school or wants to go out with friends, they can just put it in the car and away she can go!.
Antibiotic started late yesterday - once a day injection for seven days (we will take the last dose home with us). We should see improvement by tomorrow morning.
Kate stopped by on her way back to Shenandoah. We all had pizza together as we watched wheelchair karate in the rotunda area. The class is taught by a teacher in a wheel chair - but, she can actually walk. So sometimes she had to stand up to remember the moves and then transfer the moves to the wheelchair. Interesting.
Now Miss Susie is a tired girl. I am heading back to the hotel for the next four nights. I am looking forward to my own bed - even if it is for only four hours at a time! My brother will come on Saturday to help us check out and load up the car. Jack has rehearsal for his show which opens on Wednesday of next week, so he can't come to assist with the discharge. We will just surprise him when we get home!
Until tomorrow, thank you for all your words of encouragement and understanding. God bless all you angels from the little one here in New Jersey.
Love,
Julie
Monday, October 13, 2003 8:34 AM CDT Good Monday morning!
This is the second try at updating - AOL decided to close down just as I was adding the finishing touches to the first try!
Susie had a great Saturday and Sunday with lots of company and an outing to Applebees. She ate lots of her favorite food - who remembers what that is?! And shared good times with her friends.
Another UTI now plagues her - sooner or later she will have killed every possible strain and be done with them, I hope. She is now willing to take cranberry pills (won't drink the juice) and eat yogurt to help prevent any more intestinal infections from the antibiotics killing the good bacteria. I guess that is a huge step precipitated by the knowledge of what happens if you don't take preventitive precautions.
Goal for the week is to take the best advantage of the remaining 15 hours of therapy in preparation for our release on Saturday. This weekend I had comments from at least 10 other patients who are in the gym when she has therapy telling me how hard she works and how impressed they are with her attitude and ability to problem solve during her therapy sessions.
I will keep you posted as we move closer to our homecoming. Please keep all of us in your prayers - lots of new challenges when we get home.
God bless you all.
Love,
Julie
Saturday, October 11, 2003 11:33 AM CDT
Good morning all (and a very good morning it is!)
Miss Susie is a little sore in the shoulders from all the work she is doing in PT. I wish you could all see her flopping all over the mat, trying to move her legs using a special cloth "ladder", bending in places she never knew she could bend in! She is getting VERY strong and very confident in her abilities to make progress - slowly, but surely.
We had a late breakfast today so both of us could sleep in a bit. I brought her an egg McMuffin - no meat - from the local McDonalds. Then she ate some french fries and an ice cream cookiewich for lunch - good energy foods for her 1 1/2 hours of PT coming up in a few minutes.
Many friends coming to visit this weekend - Tom from Dryden, and Janet, Kate, Peter, Kate and Danielle from LI. She wants to go to Applebee's tomorrow after church for a big dinner party!
We may not be able to update for a few days, as the site is undergoing some changes. So, be patient (seems to be the word of the year) - I will post as soon as the renovations are done. Speaking of renovations, I think the house is coming along nicely too. Goal is to have a functional bathroom and shower by next Saturday!
All you who volunteered to help Susie-sit when we needed you - now is the time to let us know when you are available. We will need people from 1-3:30 each day Mon-Fri, so let us know if you are available. There will be a special place in heaven for you after putting up with the Angel-Diva!
Bless you all for everything you are doing. We'll be home soon.
Love,
Julie and Susie (and Jack and Sarah - who looks stunningly beautiful, as always for a wedding today)
Thursday, October 9, 2003 6:28 PM CDT Another kickin' day!
Susie decided last night that she wanted to do her makeup today. Another one of the patients left and had asked Susie to let her see her with her makeup all done. She didn't quite believe that Susie could do it herself. So, I got here at 7:45am. She was almost dressed. I got her out of bed, did teeth brushing and then set up her make-up for her. She looked absolutely gorgeous - from the inside out! She got lots of compliments from male and female staff and patients. I think they all like seeing the smiling, confident Susie again!
She had two great morning OT/PT sessions. I went to the PT session for some tips on stretching her legs and on helping her to stretch herself with special cords. She ate left over rice with cheese for lunch - and some cucumbers, too. After afternoon PT we sat outside in the nice warm breeze and read for about an hour. Then I transferred her into her manual chair so she could practice wheeling. It is very hard even with the power assisted wheels, but she likes it because she says that it gives her a feeling of accomplishment when she can push herself around. Then I went to an Italian restaurant and got her fettucine alfredo for supper. It is good to see her eating again.
I'm glad I am here for Susie to share these accomplishments with as they happen. Her attitude is like it was before we came here. She is getting stronger both physically and mentally and her bubbly personality is shining through again. Many of you have told me that I am not being selfish or silly for wanting to be here with her. I thank you for your encouraging words. Susie will be home in a few days where she will continue to grow stronger and in an environment where she is surrounded by loving, caring friends. If all goes well and we are discharged on time, we plan on being at the pancake breakfast in full force - come see us and say hello and welcome home to our little angel.
God bless all you "big" angels out there. We love you!
Julie (and Susie, Jack and Sarah, too)
Wednesday, October 8, 2003 8:04 PM CDT Ah, Wednesday - good old hump day!
A very busy day today. We worked on adjusting Susie's new power chair which will need a new back. The good news is we found the back this afternoon when the wheelchair expert, Sean, spent two hours fitting Susie for a manual chair. He will fix the power chair so we can use the same back. So, for now, Susie is still using her loaner power chair and a new loaner manual chair with power assisted wheels so she won't ruin her shoulders.
Eating is coming along nicely, too. Half a blueberry muffin for breakfast, a McDonalds crispy chicken for lunch and Chinese for dinner! It is so nice to have our good old Susie back!
She is pretty tired now - pushing herself really hard again and literally pushing her chair around too. She will sleep well and so will mom.
Bless you all.
Love,
Julie
Tuesday, October 7, 2003 6:13 PM CDT It's early evening and we are getting ready to watch "Deathtrap." Susie is feeling and looking much better! The first thing we did when I got here was get her some ice cream which she downed in under 5 minutes. She had a productive hard working day at therapy and is joking and being her usual snippy self again! What a nice change from the past week. I attribute most of it to finishing the one antibiotic - no more nausea makes all the difference in the world.
Tomorrow we will get the new chair working and maybe practice transfers with the new lift so we can ask for a day pass and go somewhere together.
I feel much better being here with her. I guess both of us will sleep better tonight.
Love and blessings to all of you.
Julie
Monday, October 6, 2003 3:46 PM CDT I just spoke with Susie. Although she is still sick to her stomach, her mood sounds better. None of us believe in horoscopes, but Susie likes to check hers. Here it is for today:
"Think (and act) positively. Remember that things happen for a reason, even if you cannot see the reason at the moment. Your life will have meaning, and that's empowering. :-)"
She is using it as an away message on her IM.
I will be going back down tomorrow with her new wheelchair (her own power chair) and a lift so I can move her myself into the car for field trips! I guess she just needs her mom right now and I need to know that someone is there to take good care of her. Maybe that is why her spirits are up. She asked for a book and if we could watch a movie with Ari tomorrow afternoon. Another good sign.
Keep on praying, I am sure there will be more periods where she is "down in the dumps." We love you all and wish you blessings upon blessings for all you are doing for us!
Love,
Julie (and Jack and Sarah, too)
Sunday, October 5, 2003 9 AM Eastern Sunday morning Update.
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Mixed. Weather is great, Susie not so great. She enjoyed the DVSs with Megan last night and even ate a little pizza (close friends will know what a huge step that represents...she NEVER eats pizza) and was able to keep it down. Slept pretty well. But this morning, still nauseated. We are still looking forward to getting her off these two nasty antibiotics Monday and Wednesday so she will feel more like smiling again. If we can't take her out of the Institute for a little field trip today, maybe we will be able to have a mini party at the Geismar Lounge and enjoy the sunshine.
She loves the greeting cards so many people have sent. Julie, that creative artist, has assembled a display of cards on the wall behind the headboard and all over the room. And she has safety pins and ribbon to start stringing up the favored stuffed animals later today.
If you are thinking of sending a little colorful something in the mail, now would be the time. Unless something major happens in rehab to encourage her to stay longer, Susie plans to check out on Oct. 18 and head on back home. (Naturally, the longer she stays here the better, but only if she is gaining on reclaiming strength and skills. So far, sadly, she has just been plain SICK. Height of irony, but true.)
Friends from the Cortland area, Jodi's Hallmark has been supportive to the Carrs waaaaay above and beyond the call of kindness and good PR...our family would be proud to have you go there to find the perfect card.
4 pm Sat Update.
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Megan and I arrived, safe and sound and pretty much on time...despite the rain and cold. Thanks to all the supporters who showed up for the Pumpkin Run (and Walk)...as Robin Ptak notes in a message, it was a nasty weather day for such a great event, yet this morning at nine saw the biggest bunch of runners in the PumpkinFest`s eight year history. Jenn Daily and Megan and Susie are watching DVDs now, thanks to Jim and Gail VanDusen. We are keeping things pretty quiet, to manage the nausea and dizziness. Sadly, Susie had to miss PT once again today because of both. Maybe we will be able to get her up and out for a little day trip tomorrow. Meanwhile, thanks for all your good wishes.
//////////////
It's Saturday.
And only two more days of the dreaded antibiotics that make our Susie not her cheery self. We had a good night last night. Tried taking an anti-nausea shot along with the medication instead of when things got bad. It seemed to work, so that's what we will do again today. At least she got some sleep. Prayers to ask that the infections are cleared up so we can get back to therapy 100 Only two more weeks left!
A surprise visit from mommy Janet who ended up spending the night at the hotel with me kind of like a slumber party! Jack is on his way here with friend Megan and Jenn will be here later also. Susie is determined to feel well enough to be sprung for a few hours after pm therapy. Dr. Lam wrote her a pass, knowing that would be a good thing to lift her spirits. She is a good doctor - very aware and concerned.
Bless you all. Maybe an update later today from Jack who will be thrilled that there is internet access in Susie's room now!
Love,
Julie
Friday, October 3, 2003 10:59 AM CDT Happy Friday, everyone.
Susie and I had a productive day yesterday. Thought we had the stomach problem finally licked. Ate the ever-famous college staple "Easy-Mac" for dinner. Then about 2:00am I got a phone call from a very frightened young lady who was feeling nauseous again and didn't think the nurses were responding quickly enough. Course - nothing I could do. They lock the place down at 10:00pm, so not much sleep last night, to say the least.
Things are better again today. She ate Cheerios dry for breakfast, had OT, a team meeting and PT. Now she is resting until therapy again at 1:00. We have plans for a movie tonight. I hope she feels well enough to have some popcorn that I brought for her.
I have a meeting with the nursing supervisor this afternoon to discuss our concerns. Susie made it perfectly clear at her team meeting today that she wants to go home on October 18th - not in four to six weeks as is recommended by her therapists. Her doctor is in agreement with her, mainly because she knows that Susie is very unhappy here. Susie says she can take what she has learned her and build on it at home - she is right - and at least we will have our happy Susie back.
I will plan on being here from Thursday through Tuesday of next week then back Friday night to bring her home on Saturday or Sunday.
Did I mention what a great school district I work for. I don't know what I would do without the support of the administration and the many members of the music department taking up the slack for me and the other faculty members holding bake sales and raffles to help with mounting expenses. I love you all!
God bless you. Keep us in your prayers - still have two more weeks to go here.
Love,
Julie
Thursday, Oct. 2, 2003 6:15 a.m. Eastern Not much good news to report, sadly. Mama Bear is with her little cub, and that is very good. Susie now has an internet connection, also good. But the intestinal flu is still preventing Susie from participating in rehab. Naturally, everyone including Dr. Lam is discouraged but looking for slow and steady improvement. Julie is armed with special homemade food treats from that miracle woman Carol--Susie will enjoy the cookies and the brownies as soon as she regains her appetite.
If there is any glimmer of anything positive happening, I promise to share the news it right here right away.
Hang in there, and we all promise to hang in there too.
Love to you all.
:) Jack for the fam
OK, a little good news from Kessler. Susie is at rehab right now. She had ice chips and a few Cheerios for breakfast. Still feels a little sick. The good news is that she can tell when her stomach and intestines don't feel well. She doesn't feel it in the same way as before, but she knows something is wrong. This is good news because it means that the brain is getting the message from the pain. This will help prevent dysreflexia too. I will keep you posted. Therapy is over in about 45 minutes until 1:00pm. I will try to get more food in her!
Love, Julie (and Susie)
Monday, September 29, 2003 11:30 a.m. Eastern So on to Monday.
If you have been able to read between the lines, you know that Susie had a very rough first week. Her medications and care schedule have been another example of what we call the roller coaster, but we think that things are on a pretty much even keel now. At least we hope so. Julie will return to Kessler on Wednesday afternoon and I will join them on the weekend. Many of you have asked about Ari. Not much to tell there--her door was closed for most of the weekend and her family members (lots of them) were not talking to us. Two turkey buzzards danced for us this time, plus two deer...and a little bird at the window feeder. As soon as there is any kind of breakthrough with the therapy I promise to report it right here. Thank you all again for your support.
:) Jack
Tuesday, September 23, 2003 9:42 PM CDT A better day today for Miss Susie. Another visit from Janet to brighten up her day. Lunch in the dining hall instead of by herself. She asked for more therapy, but was told she is not ready yet. Susie is agreeable to spending another 30 days as long as she can be standing when she leaves Kessler. So, let's keep praying that all will work out with disability and Medicaid.
It's amazing that even though Susie does not really like being there, she knows that that is the best rehab place for her and is willing to stay longer, as long as she will see results. Such maturity.
I will take Susie down to the computer this weekend if we have time so she can read this week's entries. She has quite a few people coming to visit. We are planning a party either at Kessler if the weather is bad, or at the zoo if the weather is good. Susie loves the zoo!
Thanks to all of you who sent hugs (real and on paper) to me today. Yesterday was a rough day, but today has been better thanks to all of you.
Please keep us in your prayers and remember Susie's new friend, Ani also.
Love,
Julie
Monday, September 22, 2003 9:29 PM CDT Good evening all.
I am not sure if it is harder for Susie to be at Kessler by herself or for me to be home by myself. After spending almost 24 hours a day caring for her for the past three months, I really miss the special time we spent together exercising her muscles, rubbing her back and shoulders and talking about the spirit (and the Spirit) that would bring her to a full recovery.
She is a little discouraged because the PT's told her she has to have better balance before much else can happen. She really wants to be on her feet when she leaves. The doctor is just wonderful and wants her to stay at least 60 days. I am working hard with NYS Disability and Medicaid to see if we can make that happen. They are sure that another 30 days will make all the difference in the world. They review her case beginning on September 30th. Please pray that all will work out in that department.
I tried to hook Susie's computer up to AOL, but it couldn't find a phone number and she can't use the internet and her special mouse pad at the same time - the cards overlap each other. So, I got her an early Christmas present that should be in within 10 days so I can get her properly wired and she can IM and check her web page again. She does have access to a computer in the main lobby, but can't use it without help because it doesn't have the special touch pad mouse. A minor problem that will soon be solved. Hopefully AOL will be able to assist me with getting her an access number.
Today a special friend visited her - a surprise from one of her best friend's mom. She hung up the phone with Jack - a new person. Susie is also working hard to bring up the spirits of Ari who is ready to give up on life. If you would add her to your prayers also. I don't think they come from a strong faith background and she just doesn't understand how Susie can be so optimistic about life. Susie keeps reminding her about the alternative. She insists that since she lived through the accident, God must have a reason for her to be alive. How wonderful it is to have that strong faith at her young age. She truly is a mature young lady!
The new additions to the angel garden are beautiful. I will try to get a photo one of these days when the sun is out and I get home early enough from school to catch it. I especially love the stone angel holding the beautiful green globe in her hands and the marker that says, "To everything there is a season." Thanks to all you wonderful Cortlandites (and neighboring city-ites) who worked this weekend to create such a lovely surprise for us.
Thank you for allowing me to ramble on tonight. Please keep us in your prayers. God bless you all.
Love,
Julie
Sunday, September 21, 2003 9:30 a.m.Eastern Did I metion the three huge male turkey buzzards that were disco dancing outside Susie's window? Or the two deer that greeted us in the parking lot when we got back from dinner last night? I guess they don't call this the Garden State for nothing.
Dinner for 7 of us was great, and Gina and Joseph are always so much fun to be with. If Susie doesn't become Maria von Trapp or Mrs. Anna Leonowens or Nellie Forbush it won't be for her lack of love for the little ones. We heard the news about CCD, children's choir, karate, dance lessons and Cub Scouts. Susie's cousins were so well-behaved (after having traveled in the car for an hour, then waiting 45 minutes for a table...then waiting patiently and good-humoredly to be served) that our waitress treated them both to dessert. Susie had to laugh. A fun time.
So, on to today--we checked out area churches. There is one very close to the Institute, but it celebrates the mass in Latin. Pass. We'll be attending St. Joseph's, which looks to be about as big as our living room, cozy and old and friendly. There are two ramps and ample open seating near the baptismal font. Another adventure about to unfold.
The weather is perfect, perfect.
But I'm still in search of a good cup of coffee!
Thank you all for hanging in there and I'll try to keep you posted as the week wears on.
Believe.
Love,
:) Jack
Friday, September 19, 2003 2 pm Eastern Reporting from the road.
Kessler really is like The Emerald City, and many things still seem very strange and new. In Susie's area, there are many teenagers and young adults, including one 17-year-old, Ari, who broke her neck in a swimming accident recently, several guys who were hurt dirt biking, and others whose injuries we don't know about yet.
There is a bird feeder next to Susie's window and the whole grounds are beautiful--just like you might imagine The Emerald City.
Tomorrow we might be able to get to the zoo and to visit with Susie's cousins Gina and Joseph and Aunt Kathy and Uncle Jim. But for now (just after Occupational Therapy session) it's time to sit and chat in the sun. Despite Isabel, it's balmy and sunny as can be here.
We'll try to keep you all updated as much as possible. Julie and I will be home Sunday night to get back into the regular work-week "routine." (What's THAT???)
Sending love from New Jersey to all our friends and prayer warriors all over the world.
:) Jack
Wednesday, September 17, 2003 10:57 AM CDT “The encouraging thing is that every time you meet a situation, though you may think at the time it is an impossibility and you go through the tortures of the damned, once you have met it and lived through it you find that forever after you are freer than you ever were before. If you can live through that you can live through anything. You gain strength, courage, and confidence by every experience in which you stop to look fear in the face. You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, I lived through this horror. I can take the next thing that comes along. The danger lies in refusing to face the fear, in not daring to come to grips with it. If you fail anywhere along the line, it will take away your confidence. You must make yourself succeed every time. You must do the thing you think you cannot do. Courage is more exhilarating than fear and in the long run it is easier. We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it is not as dreadful as it appeared, discovering we have the strength to stare it down. Surely, in the light of history, it is more intelligent to hope rather than to fear, to try rather than not to try. For one thing we know beyond all doubt: Nothing has ever been achieved by the person who says, `It can't be done.' “
~Eleanor Roosevelt
With love to you all. We're off to the Emerald City and Susie will be packing her ruby slippers and everything else she needs. Thank you all for joining us on this journey!
xo
:) Jack for Julie, Sarah (Happy Birthday!) and our beautiful, talented, and BRAVE Susannah!!!!!
Tuesday, September 16, 2003 11:40 Eastern T H I S * I S * I T ! ! ! ! ! !
We just got the phone call from Kessler saying that Thursday morning is Susie's arrival day! She is on her way!
Of course we have to get ourselves in Mach III to get everything packed and ready to rock'n'roll now! Do the Happy Dance with us now and pray for us that we don't tangle with a little lady named Isabel!
We'll try to keep you posted. Keep those prayers coming!
Love,
:) Jack for the fam
Tuesday, September 16, 2003 11:40 Eastern T H I S * I S * I T ! ! ! ! ! !
We just got the phone call from Kessler saying that Thursday morning is Susie's arrival day! She is on her way!
Of course we have to get ourselves in Mach III to get everything packed and ready to rock'n'roll now! Do the Happy Dance with us now and pray for us that we don't tangle with a little lady named Isabel!
We'll try to keep you posted. Keep those prayers coming!
Love,
:) Jack for the fam
Monday, September 15, 2003 8:25 PM CDT Hi everyone! I have a few observations and comments to share with you this evening.
Sarah was home Friday night for the first time since going back to school two weeks ago. She and Susie had some great quality sister time. The best part was her seeing all the new things Susie could do! I don't know how many times she yelled at me because I wasn't "holding on" to Susie, or because Susie was leaning forward without me pulling her toward me, because Susie was putting on her own eye make-up! I heard Sarah say "no way" at least one hundred times! She was so excited to see the progress her sister had made. We know that at Kessler that progress will continue magnified many times.
The new pictures that Tom put on the website for us include photos of the CHS football team working in the yard (those are the ones with all the cute looking guys with the big smiles!) With all one hears in the news about the troubled youth today, it does one good to see that in the Cortland community, it's not just the adults that are pulling together for Susie. Yesterday one of my favorite classes that I teach (it is a class of "life skills" students - a warm and loving group of 13-20 year olds who love making music) made cards for me to bring home to Susie. Most of them don't know her - but they know she is sick and needs to hear good wishes from a lot of people. Today Gary from Cortland Housing Authority came to put in a temporary ramp for Susie so that we can get her out of the house without having to carry her down the steps. Before he left, he made sure that I had his phone number in case I needed him for anything. Terry Mingle has a post about the benefit on December 6th with local bands and a local DJ and music store who will be co-sponsoring the event with her band. Then there is the pancake breakfast on October 19th sponsored by the Elks. Amazing! That is part of what this great community is all about. I can't think of any better place to raise a family.
Well, thanks for letting me ramble today. God bless you all for your prayers and your part in being part of an even larger community of friends.
Love,
Julie
Sunday, September 14, 2003 7:45 a.m. *** CHECK OUT THE NEW CONSTRUCTION PAGE OF PHOTOS, COURTESY JEFF GEBHARDT AND TOM PIRKO !!! ***
The wedding was an amazing experience. There are 4 handicapped-accessible parking spots reserved in the lot in the park where the ceremony and reception took place--the DJ took up one and 3 other cars without handicapped stickers took the rest. Hmm. We parked in some random place convenient to the ramp...and not five minutes later another family with one person in a wheelchair discovered the same problem--and solved it in the same way.
Sarah was very much Big Sister throughout, not schmoozing but staying with Susie during the very long cocktail hour while the wedding party had photos. Susie's godparents (parents of the bride) were so happy to see both girls and if I do say so myself as a proud dad, both girls looked beautiful. I think it is very reassuring and affirming for people to see Susie in person and talk to her in person when they have been praying for her and fundraising for her all these many weeks.
Later in the evening, Carol and Vince brought over Susie's favorite pasta al fredo and brownie sundaes. We ate by candlelight and had good family conversation.
Now...today! Our goal is to get to church, all of us together, where we'll meet up with my mother and stepfather (who are soon on their way back to their winter home in Florida--this will be their last time to see Susie before Kessler), and my brother and his family. Grandma and Grandpa Along have promised to visit, too, so it looks to be a busy and happy day.
Love to you all.
xo
:) Jack
Wednesday, September 10, 2003 9:14 PM CDT Good evening all!
Lots of visitors today including Grandma and Grandpa Along (who brought PB cookies) and Chrissy (who did a manicure job on Miss Susie.) Tonight we took a field trip to Friendly's with Susie and our two special friends from across the street - Maya and Kaylee - whose dad, Jeff, was helping to wire Susie's new room. It was great fun and a nice little trip for Susie.
Now Jack is cleaning out the kitchen laundry area in preparation for the doorway being put in tomorrow. Things have been moving very quickly this week. Finishing the deck is the main thing on the agenda for tomorrow so the ramp can go in and Miss Susie can go out!
Susie's new mattress came today. Hopefully, that will help prevent any more pressure sores. Her first one is just about healed, and we would like it to be her last.
A busy day tomorrow with both PT and OT coming in probably for their last visit before we go to Kessler. Still no definite word on the date. But - they say patience is a virtue, so we'll try hard.
Thanks for all your prayers - please keep them coming. We know good things are in store for Susie at Kessler and at Kessler from Susie. We can't wait for the new challenges and rewards her stay will bring. God bless you all.
Love,
Julie
Tuesday, September 9, 2003 8:01 PM CDT News for the day -
It looks like next Thursday will be the day to go to Kessler. Not quite finalized yet, but pretty close.
Today Susie did some pretty amazing things -
She wheeled over to the TV and managed to get the remote control off the shelf without dropping it.
She dialed the phone to make a call (I guess she had already been doing this, I just didn't know!)
Jack and her OT, Tom, supported her on the sides and stood her up! She said, "Oh, I feel so tall!"
All in all, a great day!
Now I must leave to go to bed. A wonderful friend is coming over to do Susie's nighttime care so I can get more than four hours of uninterrupted sleep. See how many super support people we have here. We just couldn't do it without everything that all of you are doing. We love you all. Thank you!
Love,
Julie
Monday, September 8, 2003 9:05 PM CDT YEAH!!!!!
WE HEARD FROM KESSLER TODAY. WE ARE GOING – MAYBE EVEN THIS WEEK! WE SHOULD KNOW BY TOMORROW AND YOU WONDERFUL READERS WILL BE THE FIRST ONES TO KNOW. SO – STAY TUNED TO THIS STATION FOR MORE DETAILS.
WE LOVE YOU ALL!! GOD BLESS YOU AND PLEASE KEEP PRAYING FOR A COMPLETE RECOVERY FOR OUR SPECIAL ANGEL.
LOVE,
JULIE
Sunday, September 7, 2003 10 pm Eastern Me again.
Quite amazing. While Julie was conducting Children's Liturgy, Mrs. G showed up with a new hat with the tag still attached (Minnie Pearl Jr.?) revved up to reconfigure the lawn. She arranged with our friend David to come with his truck and he yanked out two tree stumps we've been putting up with for several years. Transplanted Steph's rose bush, moved all the daylilies and ferns, and dug out all the Bishop's weed. And how did this happen? Fourteen of the Cortland High varsity football team players swooped in with their coach, his wife, and an assistant coach. And one of the high school teachers, Lois, proved to be another expert gardener. Gary the Cat watched the activity from a respectful distance, but Susie and her friend Megan sat right on the porch and checked out the hunky guys. Susie even ate some pizza--which she never does. Nicole and Jamie stopped by too. Mrs. VanDusen (who has been taking care of all the donations, bless her little heart) brought a freshly baked peach pie and was nice enough to stay for some good coffee talk.
Later in the day Susie and I wheeled to the local P&C, where cans and bottles are still being collected for the Ramp Fund. We found out where the good sidewalks are--and which spots do not have cut-outs! Then she sat in the sun in front of the house, loving the warmth.
Then Jeff, Gonda, Maya and Kaylee came by and helped us devour that peach pie. We saved the last slice for Nicole, who promises to visit Susie tomorrow on her lunch break.
That pinky is being reluctant but Susie will keep working on it tomorrow. Also Julie will keep calling Kessler. Progress is being made all around. Exciting times for the Carrs.
Thanks for hanging in there with us. Keep praying and keep in touch with us as much as you can. We need you all, every single one.
Love, Jack
xo
:) J
Thursday, September 4, 2003 8:21 PM CDT A note from Susie - at long last! Short, but VERY sweet!!!
hey everyone! Guess what.... I CAN MOVE MY PINKY! It's very slight and if you blink you miss it...but who cares, it's movement! wooo wooo!
Praise God - in His time - a little at a time!
All our love,
Julie, Jack and Susie
Wednesday, September 3, 2003 9:59 PM CDT Hi all. Check the past journal entries for Jack's entry from today.
Work has been progressing on the house addition. The windows are in (except for one for the workers to crawl through for access until they break through our kitchen wall!). The deck flooring is done so that the ramp can be measured for and added. Tomorrow they will break through the outside wall of the living room (just the very outside for now) and soon will actually break through into the house. Jeff has been taking pictures again and we will post them as soon as there are a few more. Meanwhile, I have to develop a roll of film that shows Susie with many of her friends. I am sure you will enjoy seeing those too.
Monday my sisters, my niece and grandniece (my BABY sister's grandchild) came to help rearrange Susie's room in preparation for the break-through. Taylor, who is almost four, entertained Susie by changing the crayons in her writing tool so they could color together and talking Susie's ear off. After they left, Susie told me that Taylor asked her to get up and go for a walk with her. Susie told Taylor she couldn't walk, to which Taylor replied, "Do you want me to teach you? It's easy - look you just go like this!" From the mouths of babes! Won't Taylor be pleased when Susie follows her instruction and just "goes like this!"
We have our nurse who takes very good care of Miss Susie and makes it not so hard for me to be at school and away from her. No word yet from Kessler, but I expect to hear from them before the end of the week.
Please keep praying for us. We have a long way to go. Susie still has great spirits and appreciates all you are doing for us. God bless you.
Love, Julie
Wednesday, September 3 7:45 am Eastern Originally submitted as a Letter to the Editor in the Cortland Standard, Cortland, NY. Revised version of the following published 9/2/03:
To the Editor:
Since June 29, our family has been showered with overwhelming support from individuals and organizations in the Cortland area. Our younger daughter, Susannah, suffered a spinal cord injury in a one-car accident and we would like to take a moment now to thank some of the people who have donated time, goods, and services to help her on her road to recovery:
Jeff and Gonda Gebhardt, Paul Yaman Construction, Scott Steve, Michael and Dotty Sills, Vince and Carol Patriarco, Connie Starmer, Allison Capano, Mark and Kim Reitano, Chris and Andrea Mott, Bruce Turner, Dan McNeil, Christine Place Architectural Services, K&B Plumbing & Heating, Jerry Truman Excavating, Dr. Kelley Aluminum Ramps & Landing, Paul Yaman Roofing, Joe Zerillo of Hometown Florist, Steve and Victoria Besler of Shaw and Boehler Florist, Steve Dafoe, Larry Forker of ServiceMaster, Saunders Concrete, Northern Block Co., Builders Best, Marvin Windows, ABC Supply Corporation, Bradco Supply Corporation, Osborne’s Flooring, CHAC, Bill Masterson of Wickes Lumber, Mike Latta of Seneca Automatic Door, Barden-Robeson, Leach Custom Trash, Tom Barber and the entire DEEZNUTS basketball team, Tom Pirko and Bishop’s Home Center, TJ Griffin of P&C Foods, Ron and Delilah Tongue, Regina Sardo, Connie Gamel Boutique, Cortland County 4-H Teen Group, Melanie Arnold of Time Warner, St. Mary’s Church, Nick Little and the Christ Presbyterian Church, First Baptist Church of Birmingham, Alabama; John Gustafson of Homer Baptist Church, Gail and Jim VanDusen, Benjamin M. Wells, Michael W. Brownell, Alison Ferris, Cortland Youth Bureau, Cortland City School District, Tompkins Cortland Community College, and Cazenovia College.
We have been slow to go public with our profound thanks for fear of forgetting even one single name. We know there are scores of names that we have inadvertently missed here—please forgive us.
The community in which we chose to raise our daughters has been overwhelmingly supportive during our time of change. Please continue to pray without ceasing as Susie continues the work of rehabilitation.
Sincerely,
Julie and Jack Carr
Sarah Carr
Susannah Carr
Monday, September 1, 2003 8:55 PM Eastern A quick note. Today was rainy...most all day long. We're all happy that the roof is intact and the new opening to the cellar (near where the ramp will be very shortly) has been sealed up by yet another worker/friend, Mark. Keep in mind that Mark did that--alone--in the middle of his long weekend.
Both of Julie's sisters, Ellie and Mary, came by today, along w/ Mary's daughter Angela and Angela's daughter Taylor. Sounds like a whole lotta estrogen goin on to me! And didn't they move around the furniture? Of course. I missed all the fun.
Terese worked range of motion and balance with Susie and all in all it was one day more on the road to recovery.
Thanks to you all for your support.
xo :) Jack
Sunday, August 30, 2003 10:45 a.m. Eastern Hi, everyone. So we're nagging at Susie to get on here and write her own message to you--fat chance. The chickie is too busy meeting and greeting, too busy trying to keep up with her emails and IMs, chatting on the phone...you get the point, say nothing of the PT and OT that are so good for her body and her soul.
So, in lieu of Susie Herself, I'll chime in. Remember I promised to tell you about another hero? Well, there are so many, so many all around us. But today I'll pick out one and sing his praises.
This man is our across-the-street neighbor. You can see his gray/blue Victorian house in several of the shots of our construction site. He is the one who *immediately* upon hearing of Susie's accident ran across the street, answering machine in hand, and offered to deal with the inevitable barrage of phone calls. He gets up every morning and makes coffee in his wife's office two houses away. He mows our lawn as if it were his religion. He sends his daughters to us with trays of chocolate chip cookies. He sends his daughters to Susie to play board games with her and to color in coloring books. He can swing a hammer, he can drive a nail, and he can shovel the gravel for the foundation. He gathers skilled friends to work into the night on putting up walls, cutting sheets of insulation, re-staging the lumber. He has been about as doting and as fully engaged as any friend can be. Sarah and Susie and Julie and I appreciate him more that we will ever be able to say in words.
His selflessness and good cheer and know-how and can-do attitude amaze us all. It is his digital camera and his technology expertise that have kept the photos being posted to the gallery here. He was there in the hospital to see Susie in her halo, and he didn't flinch.
He is the kind of man who doesn't just sit around thinking that something should be done--he goes about DOING it. Now I should let you know that, meanwhile, he has his own *huge* kitchen remodeling project going on. (We Carrs know the feeling--our little kitchen deal grew like Topsy several years ago.) I should let you know that he is starting another new schoolyear, just like all the rest of us. I should let you know that his five children keep him hopping, just like all the other parents out there. Family weddings and trips and emergencies and picnics and get-togethers have kept his summer loaded.
Through all of it since June 29 he has been a faithful neighborhood friend, the kind of old-world "family retainer" who proves his loyalty and steadfastness day by day by day. To keep it very simple, I don't know how we would have gotten to this point today if it were not for his help.
Please stand and give three cheers for JEFF GEBHARDT!!!!
Yay, Jeff! Yay, Jeff! Yay, Jeff!
Thank you! Thank you! Thank you!
Next time, another hero. There are so many. xo :) Jack
Wednesday, August 27, 2003 9:59 PM CDT To paraphrase one of our faithful readers and good friends - the miracle is happening, not in our time, but in God's time.
I wish you all could have the chance to spend an extended amount of time with Susie - to see her humor help her cope, to see her incredible drive and determination to do more and more each day, to share her insightful (and frequently hilarious) comments on her condition and to experience the love she shares with all those around her.
Have a blessed and wonderful evening.
Love, Julie
Tuesday, August 26, 2003 9:30 PM CDT Happy Tuesday evening, everyone! Make sure to check the past journal entries for Jack's entry from tonight. I am booting him to give you more details on yesterday's trip to the doctor.
Susie's orthopedic surgeon told her she could start weaning herself off the neck brace - cold turkey, no soft brace. He suggested one hour the first day, two the second, etc. and off all night. She is allowed to leave it off as long as she wants, as long as there is no pain. So last night she slept without it (although she is pretty sure she did not move her neck at all, even though she could!) Today she took it off right after I transferred her to her chair (I made her keep it on during the transfer since I was doing it myself) and it has been off ALL DAY!!! No neck pain, no tightness, no weak muscles! This is pretty amazing considering she hasn't used those muscles since June 30th! Of course, I took a picture.
Now she is talking about moving away from using the top strap on her wheelchair. This makes me a little nervous, but who am I to stop her!
No further development on Kessler. Susie is sure that her miracle will happen there. She is determined to work hard and can frequently be heard letting God know of her impatience and desire to recover now! (Sometimes she is downright impertinent as many teenagers are, although I am sure the Father of multitudes of teens is used to that kind of attitude!) Make sure you help her out a little - maybe some nice pleading rather than scolding will be a welcome change for God!
Almost forgot to tell you that after the appointment, we went to dinner at Olive Garden. I remembered the special utensils this time and Susie ate so much fettucine alfredo that all she could eat at supper time was jello! Then we went and ordered the skylight for her new room.
All in all, a great day yesterday and today! Thanks for all your prayers - keep them coming. It really helps to know so many of you care when we have the discouraging days and need a "pick-me-up." God bless you all.
Love, Julie
Tuesday, August 26, 2003 10 a.m. Eastern So much to tell you today. But not enough time.
Flowers, flowers, flowers. The Susie Tree is surrounded with perennials--none of which I've managed to kill off quite yet. They will make a beautiful transition from summer into fall--and soon they will be joined by special Black-Eyed Susans and other perennials, courtesy of Mrs. G's (and mine, and others') hard work and Joe's generosity and thoughtfulness. Gardeners, unite! I'll make the coffee! And the iced tea.
Cyndi created the most M A G N I F I C E N T arrangement out of all the long-stemmed roses Susie has received so far. All shades of pink, the blossoms are in a beautiful Raku vase and are festooned with a bright pink silk butterfly. Cyndi has missed her calling! Beautiful.
The fresh bouquet that Debi brought last Wednesday yielded two separate bouquets--we're drying the double-big cream roses w/ pink tips and the pink carnations look as fresh today as they did in the cooler two weeks ago.
Now, here is information you want to know: One of the tallest and smartest and most mature of all of Susie's friends (and that's saying alot) is Beth, who created a CD for Susie and named it SONGS FOR A FRIEND. On the cover she printed out two silhouettes of that famous dancing baby from ALLY McBEAL, and here is the songlist:
I'LL BE THERE FOR YOU-Friends TV show
I GOT FRIENDS IN LOW PLACES--Garth Brooks
I GET BY WITH A LITTLE HELP FROM MY FRIENDS--Ringo Starr
BEST FRIEND--Queen
FRIENDS--Whoudini
THAT'S WHAT FRIENDS ARE FOR--Disney's "Jungle Book"
LEAN ON ME--Temptations
THAT'S WHAT FRIENDS ARE FOR--Dionne Warwick and Friends
WHAT ABOUT YOUR FRIENDS?--TLC
FRIENDS FOREVER--"Center Stage" soundtrack
FRIENDS FOREVER--"Saved By the Bell" TV show
YOUR FRIENDSHIP IS THE BESTEST PRESENT EVER--Disney's "Tigger"
THANK YOU FOR BEING A FRIEND--"Golden Girls" TV show (* wink to Auntie Mark)
YOU ARE MY FRIEND--Patti Labelle
GRADUATION SONG--Vitamin C
ANY TIME YOU NEED A FRIEND--Mariah Carey
YOU'VE GOT A FRIEND--James Taylor
FRIEND LIKE YOU--Big Daddy Weaver
MAKE NEW FRIENDS--"100 Songs for Kids"
STAND BY ME--Ben E. King
ALL MY ROWDY FRIENDS ARE COMING OVER TONIGHT--Hank Williams Jr.
FRIENDSHIP MEDLEY--Judy Garland and Ethel Merman
FRIEND LIKE YOU--Sammie
WAKE UP, LITTLE SUSIE--Suzi Quatro
With love to you all.
xo
:) Jack
Sunday, August 24, 2003 6:40 pm Eastern Susie had this taped to her bedroom wall before her accident. She tells us that her acting instructor, Bodee Bauer of Shenandoah University, gave it to her:
"Our deepest fear is not that we are inadequate;
Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us.
We ask ourselves,
Who am I to be brilliant, gorgeous, talented, fabulous?
Actually, who are you not to be?
You are a child of God.
Your playing small does not serve the world.
There is nothing enlightened about shrinking so that other people won't feel insecure around you.
We were born to make manifest the glory of God that is within us.
It is not just in some of us,
it is in everyone.
And as we let our own light shine,
we unconsciously give others permission to do the same.
As we are liberated from our own fear,
our presence automatically liberates others."
Love to you all from all of us. :) J
Saturday, August 23, 2003 0:11 AM CDT Good evening, or should I say morning, everyone!
So much has been going on, my head is spinning! The latest would be that six of Susie's good friends from school (and one of their mothers) arrived today to spend some time with the princess. Of course, she is in her glory! It is so neat to see her spreading her laughter and that big beaming smile with friends who traveled so far to be with her. Kate and her mom haven't seen Susie since the halo came off, so they are super impressed with her progress. The other five are just being great friends - helping her with phone calls, laughing at old antics, and making sure that she is still "one of the gang."
No new news about rehab. We are just putting together all the paperwork and don't expect to hear from them until the week of Labor Day. As I think I mentioned earlier, the majority of the staff is at an international spinal cord conference this coming week, so they will not be evaluating new patients until they return.
Well, bedtime is around the corner. I have six lovely ladies to care for tomorrow. We are actually going to try to take a field trip to a restaurant for dinner! I'll get you the details tomorrow.
A history of the construction is on the website. You will need to copy and paste the second page into your address line. There are 16 total pictures. I have some to develop of Susie and will post them as soon as the roll of film gets used up!
God bless you all.
Love, Julie
Wednesday, August 20, 2003 9:12 PM CDT Persistence pays off! Here is the update on our quest to find an intensive rehab program for Princess Susie.
Yesterday, after much time on the phone with our medical insurance and an admissions counselor at Kessler Institute, we were able to get the answers we needed to proceed with serious consideration of the Kessler Institute. We had investigated a number of rehab centers and have been very impressed with the facilities at Kessler and the fact that it serves only spinal cord patients. Because it is out-of-state there will be some insurance issues to deal with including the problem that Medicaid will not pay the deductibles - but, I have been known to be a very aggressive fighter when it comes to getting the best for our children! There is no place in NY that even comes close to Kessler (in West Orange, New Jersey), so that will be my primary arguement. The counselor was able to answer my myriad of questions and asked some very good questions herself. The next step is to send them some initial reports from the county nurse, PT and OT along with our health insurance information. They will review this (once their staff returns from an international spinal cord conference) at the end of next week. Then they will schedule a two-day intensive inpatient evaluation and let us know if they think they can assist Susie in working toward her goals of independence and eventually complete recovery. As I mentioned earlier, I was very impressed with the counselor and the family feels that this will be a wonderful opportunity for Susie. She will be there 4-6 weeks if they accept her into the program.
Meanwhile, Sarah is preparing to leave for college. My once clean and organized first floor is now home to all her "stuff." How she will get that all into the tiny apartment she will be sharing with three other girls is a puzzle to me! She is looking forward to getting back to school, but nervous about her senior year and leaving her sister. She has already informed her dean that the college needs to make several alterations to the campus to make it accessible for her sister!
Tomorrow the windows for Susie's new addition arrive! Then they will start the wiring. The deck goes up soon so that the ramp builders can start. We are really waiting for the ramp so we can get Susie out of the house more easily and therefore more often.
Thank you for your continued prayers. We still have a long way to go. God bless you all.
Love, Julie
Tuesday, August 19, 2003 8:10 pm Eastern I begged Susie to talk to you today, but she is busy talking with Brett, Beth, and the twins Brie and Christi. So you're stuck with me once again.
Today was a red-letter day! It was the first time out of the house in 13 days since Susie's homecoming from Rehab. Remember? Sarah's beau Dustin and our friend Art "bumped" Susie down our front porch steps--and Miss Thang took it like a champ, as always. And as always, Julie and I bit off our fingernails, watching. I transferred Susie into the Quest, then out of it and into the non-electric (and hence folding and more portable) wheelchair and then onto the lab table for her testing. All went well at the hospital and of course the nurses were glad to see what progress she has made at home in the last two weeks. Little Annalyse, the girl who had been in coma for so long, is preparing to go home next week and looks great. Susie met a young woman who was flown in from Wisconsin to rehab here in Syracuse--arriving just after Susie left. The two injuries are similar, and I think Susie's kind words were encouraging.
Then we went shopping and ran into some Junior Miss friends, the Horn family. When we got home, happy but tired, who was here chatting with Sarah other than Uncle Jerry's friend Todd, who turns out to be not only an Occupational Therapist but a designer for adaptive spaces. Gotta love that, too.
The roofing is in full swing. Literally. It's all coming together, and we're looking into options for a residential rehab program for our Susannah. We'll keep you posted.
Meanwhile, you do your part and keep praying for all four of us, if you would. If you live nearby, stop by when you can. Susie might just share her new DVD of CHICAGO with you--thanks to Alison!
Love,
:) Jack
Saturday, August 16, 2003 4:53 PM CDT Okay, so I goofed again and forgot to do a journal entry for Friday. BUT - I have a good excuse. You see, last night two wonderful couple friends of ours wisked us off to a marvelous dinner in this fantastic restaurant that Jack and I only go to on very special occasions. Another dear nurse friend was "on call" in case the official Susie sitters - her sister and her boyfriend and another of her many male friends - ran into trouble. It was a wonderful evening and made both Jack and I feel relaxed and part of the adult world! So, you see, there are many people here in Cortland that are pitching-in in all sorts of ways to make our lives brighter. We thank each and every one of them.
Susie had her first OT visit on Thursday and will be getting additional OT from one of our friends to supplement. She is most happy when she feels like she has accomplished something. She likes to work hard and see the results of her labors. She too had a nice evening watching movies and "hanging out" with her Susie sitters. (Susie actually likes to call them her playmates - but we were afraid that may raise some eyebrows! When her friends call, she asks them to "come over and play with me!")
Sarah had a busy weekend competing for a Miss America local on Thursday evening in Booneville (yes, it is as far out in the sticks as it sounds!) She did not win, but found out at the gala parade (akin to the Dairy Parade here in Cortland for all you natives) that she was first runner-up. So, in the three pagents so far this season, Sarah has won close to $600 to help with this year's school, with no strings attached. She will begin competing in the Western region this fall and spring hoping to get a title to take her to the state competition for the third year. She is changing her platform from character education to something dealing with spinal cord injury. We are so proud of her!
Well, I guess that kind of fills you in a bit on the Carr goings-on of late. Perhaps Jack will do an update tomorrow, or maybe even the Princess herself! All our love and thanks to you. Keep those prayers coming and God bless you all.
Love,
Julie
Thursday, August 14, 2003 7:12 PM CDT Well, all the walls and a lot of the roof are up! I have been dutifully taking pictures with the digital camera. As soon as the camera master returns home from vacation, we will get new photos on the page for you all to see. It is just amazing seeing these people, most of whom we didn't even know before this week, coming together on their free time to build Miss Susie a place of her own. In no time you will once again hear word of the long awaited shower!
Sarah is competing in a Miss America preliminary competition in Booneville tonight. Jack is there with her. Susie colored her a picture for good luck. It took her quite a while with her special writing utensil, but she did an absolutely beautiful job and was quite pleased with herself! I'm sure Sarah will be touched.
Things on the home front are also going well. It is definitely overwhelming at times and we are still trying to find a schedule that works and allows Susie and I a block of time to sleep and maintain our energy.
We are investigating the possibility of going to another rehab center for a month or so of intensive work. A lot depends on which places will accept her and be able to work with where she is now. Susie feels like she is not being worked hard enough now that she is home. We went from three hours a day of PT/OT to 1/2 hour a day of one or the other.
We still do not have a nurse coming each day to help me out with the day-to-day bathing, etc. that needs to be done. I do try to "escape" from the house to run errands at least once a day in between the nursing duties that average every four hours. That little break is helping to keep my sanity. I plan on going back to work parttime in September, although I have not officially spoken with my superintendent. If we get accepted at a rehab center, I will need to go with Susie.
Jack has decided to write a book on our experiences, although I think he should co-author with Mrs. Johnson! Me, I'm just keeping a journal (also helpful to my sanity). Whether I share it at some point or not - I'm not sure, we'll see.
Please keep your prayers for a complete recovery for Susie coming. Sometimes she gets a little discouraged and I imagine it will be harder once her friends start back to school in a few weeks. Thank you for all you are doing. We love you all.
Julie
Wednesday, August 13 2:38 pm Eastern Today, something about a hero.
Now you know that Scott Steve has been heading up the actual construction work--he knows more phone numbers and gets more cell phone calls than anybody I know other than Sarah! So: a quick punch of a few buttons, and Somebody is at our house with a hammer and a dream. Last night the Somebodies (Steven, Matthew, Manny, Paul, Joe and John) were pounding away until after dark--and by no magic the wall toward Jeff's house is up! Scott The Hero. Meanwhile, you should know that Scott spent his morning on official capacity as County Legislator battling the dragons and fighting the good fight. Trust me when I tell you, he is one of the good guys.
A little virtual applause for Mr. Scott Steve, please. (Thank you thank you thank you very much for that standing ovation!)
Next time, I'll tell you about another hero.
Love,
:) Jack
Saturday, August 9, 2003 3:31 EDST Hi, everyone.
Time to talk about the renovations that are happening to make our home more comfortable for Susie.
First, we should let you know that we live in a neighborhood of many converted Victorian-style homes. Many houses near us are cut up into several apartments managed by absentee landlords. But our house is on the same block as a pizza parlor and across the street from a convenient store and literally a block away from a funeral home, our church, and the elementary school where both our daughters studied. Our house has always been a single-family dwelling. They tell us that the area was developed in the late 1800's for railroad executives; therefore, no big lawns, no room for gardens. Susie's added-on ramp, bathroom, and bedroom will literally extend to within inches of our garage. So far, despite rain almost every day, crews have dug footers, raised a cinderblock foundation, backfilled leaving a crawlspace. Tomorrow's work will be to strip off the clapboard and shingle shakes to prepare for Monday's framing. This morning, early, a local supplier dropped off all the lumber needed. Tom Barber and I spent some time last night pitching out saved-up props and costumes and the "stuff" of the girls' growing-up years, enough to fill a whole dumpster. Where will we put the discarded siding? That mystery will be solved soon!
And so Susie is coming right along. Right now she is on the front porch holding court with yet another young guyfriend. She has so many. We're hoping to have a little family gathering tomorrow with grandparents and aunts and uncles and cousins.
My personal best to all of you, both lurkers and posters. Your support means so much to us. Stop by when you can. Pray without ceasing, because we know that prayer has worked wonders already. And we need many more wonders to come.
Love,
:) Jack
Thursday, August 7, 2003 6:47 PM CDT hi everyone, it's susie! I'M HOME!!!!!! WOOO HOOO! visitors are welcome even though the rents try and schedule visiting hours, i am up for anyone anytime :) thank you all so much for everything you continue to do for me and my family. our load is much lighter because of beautiful people like all of you. also dont ever think that you can not do enough because in the end the prayers that you have all said for me add up. please continue to pray for my full recovery. my body can use all the help it can get! thanks again!
all my love, susie
Thursday, August 7, 2003 5:50 AM CDT + + + + + + + + + + + + +
Note to our local friends:
+ + + + + + + + + + + + +
This is Papa Bear (Jack) speaking. As you know by now, our Susie is home, and we all are going to make her as comfortable and happy as we can. Thank you all for your continued prayers and phone calls and visits and gifts and...yes, lurking here and posting here.
Susie loves company, and we love having a full house. Please do come to visit and prepare to be amazed. Please don't plan on staying for an hour and please don't be offended if one of us gently suggests that it's time for her to nap or to have one of her required medical procedures.
Julie will be urging Susie to post a little note here herself later today--and I will be glad for mine to be kicked to the curb.
Again, love to you all and keep praying for more miracles.
xo
:) Jack
+ + + + + + + + + + + + + +
Thursday, August 7, 2003 5:50 AM CDT + + + + + + + + + + + + +
Note to our local friends:
+ + + + + + + + + + + + +
This is Papa Bear (Jack) speaking. As you know by now, our Susie is home, and we all are going to make her as comfortable and happy as we can. Thank you all for your continued prayers and phone calls and visits and gifts and...yes, lurking here and posting here.
Susie loves company, and we love having a full house. Please do come to visit and prepare to be amazed. Please don't plan on staying for an hour and please don't be offended if one of us gently suggests that it's time for her to nap or to have one of her required medical procedures.
Julie will be urging Susie to post a little note here herself later today--and I will be glad for mine to be kicked to the curb.
Again, love to you all and keep praying for more miracles.
xo
:) Jack
+ + + + + + + + + + + + + +
Wednesday, August 6, 2003 10:09 PM CDT Well, after MUCH ado (see later), Miss Susie is finally home.
She spent the day taking her last shower until her bathroom is done, getting all dressed up in a gorgeous red and white sundress, putting on makeup in OT and saying her goodbyes with bagels of baskets and balloons to all the wonderful staff on 6J, 7A and 2N. Jack took a basket to the Emergency Room, too, and Susie hopes to visit during a night shift someday to meet up with the staff who helped her when she first came to the hospital.
When we got home (the beginning of the trip being ado #1 and 1A), the new little Charlie Brown Susie tree was all decorated with ribbons and a number of friends were here to see her exit from the transit van (ado #2) and entrance into the house (ado #3). Someday, I'll explain the ados. Suffice it to say, I will be doing the transporting from now on, if I have to carry her out of the house myself.
Lots of company tonight, a worn out little girl and some shed tears all around. Tomorrow will be a great day as we start the beginning of yet another phase in our lives. Please keep praying for all of us. We need your support.
Thank you for all you have done and continue to do.
The Carr family - all home again!
Tuesday, August 5, 2003 10:21 PM CDT What else can I say - WE ARE COMING HOME TOMORROW!!!!!
SUSIE IS SO EXCITED SHE DIDN'T SLEEP WELL LAST NIGHT. THE STAFF AT 2N REHAB DOESN'T WANT HER TO GO (SHE'S JUST TOO NICE AND CHEERY ALL THE TIME), EVERYONE - AND I MEAN, EVERYONE - INCLUDING THE SECURITY AND INFORMATION DESK STAFF - SPOKE TO ME TODAY ABOUT HOW WONDERFUL SHE LOOKS AND HOW GREAT IT IS THAT SHE IS GOING HOME. IT'S LIKE MISS SUSIE HAS FORMED LIFE-LONG BONDS WITH ALL OF THE STAFF. PRAYERS CONTINUE FROM ALL OVER THE COUNTRY AND INDIA AND AUSTRALIA (TWO FORMER EXCHANGE STUDENTS!).
JACK, SUSIE, SARAH AND I ARE STILL OVERWHELMED AT THE SUPPORT FROM ALL OF YOU, OUR DEAREST FRIENDS. YOU CAN NOT IMAGINE THE POWERFUL PART YOU ARE PLAYING IN OUR HEALING PROCESS. THANK YOU FOR ALL YOU HAVE DONE AND CONTINUE TO DO.
TOMORROW - AN UPDATE FROM SUSIE - ASSUMING WE FLIP THE COMPUTER 90 DEGREES SO SHE CAN GET TO IT!
ALL OUR LOVE, THANKS AND PRAYERS.
JULIE, JACK, SARAH AND MISS SUSIE
Monday, August 4, 2003 8:48 PM CDT Only two more days until we get our Susie home. As you can imagine, we are all very excited.
It looks as though she will be brought home via van transport so she and her power chair will arrive together. A portable ramp will be set up and presto - in the house she will be - complete with wheels. She has had plenty of driving lessons, so we are comfortable with her tooling around the living room, her bedroom (temporary) and the dining room. She will also be able to get to the computer with a little "K turn" work, so hopefully you will hear directly from her soon.
We learned today that the shower chair I had so much trouble with on Sunday will not work for her. The OT had just as much trouble today. So, we decided on a non-wheeling chair that is more like an outdoor lounge chair. It is made of netting and actually reclines. Then she won't have to worry about supporting herself on one arm as she washes herself. Good thing to learn before leaving rehab and ordering the wrong thing!
So, we have clean hair again and may try tomorrow night for one last shower before being relegated to a showerless house for a month or so! I do think I will be able to use my creative (yet, practical) genius to rig something up to wash the hair. I'm thinking a kiddie pool under the head of the bed with lots of plastic tarp!
So, that's the news for the day. Tomorrow we will try to get pictures where we can of the staff. Susie admittedly will miss all of them very much. We have already seen most of the ICU staff who are just thrilled with her progress in such a short time.
Keep those prayers coming! We still have a lot of adjustments to make and a long road ahead of us. We love you all.
Julie
Monday, August 4, 2003 Countdown to homecoming!
The living room which will serve as very temporary headquarters for Miss Susie is looking pristine! On one of the hottest and most humid days in history, these friends gave up their time to help me strip the entire room of 21 years of debris so that we could steam clean the carpet for storage and get down to hardwood floors for the hospital bed.
Debi and Rick Carnrike
Regina Sardo
Megan Falso
and these friends will help put the furniture back later today:
Caleb Leach
Art Ptak, Jr.
Tom Pirko
Now, just a few words. Debi might be called the Martha Stewart-on-a-shoestring decorator. She has served as designer for the altar displays at St. Margaret's Church in nearby Homer, and every home she has ever been The Mother for is filled to the brim with her warmth, style and resourcfulness. She created a space for Susie like none other, and we are very grateful.
Rick kept me laughing all day long. He came up with so many beer belly jokes that I lost track.
Susie's first haircut was in Reggie's chair, and she is a dear family friend-in-need-is-a-friend-indeed.
Megan, you all know by now, is our third "daughter." She (unlike Sarah and Susie) came to us already potty trained, and we love her like crazy.
Caleb and Art I'll tell you about later, but a quick word about Tom. Keep looking in the photo gallery. Sooner or later I'll catch on to the technology and post a photo of him and Susie that will blow you away.
Have a great Monday, you all! xo :) Jack
Saturday, August 2, 2003 8:36 PM CDT I have a special story to share with you this evening.
Every once in a while I have what I call a "melt down" - frequently on my way to or from the hospital. Today it started before I left. Jack caught on real quick, hugged me by the car and then let me go - as he knew I needed.
So, I was zipping up route 81 to Syracuse praying - which for me lately has been asking a lot of questions (once I express my gratitude for the miracle of Susie's life, stamina and accomplishments.) My theme today was how we were going to handle the 24 hour care that Susie needs once she comes home. Are we going to realize when she is getting sick, or hurts herself where she can't feel? Are we going to really be able to care for her? Are we going to be able to keep her spirits high during the long road to recovery? I guess there may have been some feeling sorry for the life changes this means for all of us, too.
Now - here comes the amazing part - the honest to God truth! I was zipping along trying to find answers to all these (and more) questions when I came up behind this 18 wheeler that I wanted to pass. Know what it said on the back end and sides (this is the truth, I swear) - 1-800-CALL-GOD!!! I said, okay God, so I need a 2X4 over the head - I get the picture. All of a sudden, I felt this cloud over my head lift and had a renewed sense of God never giving us more than we can handle.
Later that morning, Susie and I were outside when she started asking questions. Among them was "What do you think God's plan is for me?" Of course I told her I really did not know. Then she said (in her spunky manner which is quickly coming back), "I wish God would consult me in His plan for me!" Told her, I didn't think so!
Great things happening today. We will see if Miss Sarah will write to you later this week. She is taking a little break for a few days and going to a friend's camp. Who knows, maybe Wednesday Susie herself will write. She is getting pretty good using her special computer splints!
Love and blessings,
Julie
Friday, August 1, 2003 8:57 PM CDT Oops! Didn't realize Jack already did an update for today. Make sure you check it out in the journal history section of the web page.
A number of "cute" Susie-typical happenings today. First, she decided last night that doors were no longer to be an obstacle, but a challenge to move to the conquered list. So, she now cruises through the hospital doors with the greatest of ease. This is not an easy feat, as the doors are no more than 6 inches wider than her power chair! Chalk another one up for Susie.
She also used the computer with her special splints to find out about the possibility of having a companion dog. We discoved a flaw with the splints, so the OT fixed her right up. Now the next time she will be able to use both hands to type instead of having to use one to steady the other. Hopefully, once she gets home on WEDNESDAY!!! she will be able to access this page and write updates herself.
Feeding herself is getting to be second nature. She has learned that if the last bite is not quite two bites, she can save much energy by stuffing the whole thing into her mouth at once. Her OT is quite amused with that particular coping strategy.
Still no shower - but we are working on it. The chair needs a little adaptation so she won't fall over since she has no upper body control yet. We are also working on new pictures. You all are just gonna have to be patient!
So, there you have it. Hope I didn't duplicate Jack's message too much. Thanks again for your support - whenever I start to feel the stress of it all, I realize that reading a few of your entries gives me all the support and encouragement I need. So, thanks for all you are doing.
All my love and blessings to all of you.
Julie
Friday, August 1, 2003 7:35 PM CDT Another busy day for The Doozer!
She fed herself a whole bowl of Cheerios and a whole banana...mighty impressive! She was able to use her sippie cup with BOTH hands--up to now, she has been using only the right.
In therapy she opened a tube of toothpaste by herself and brushed her teeth! Another breakthrough. Our friend Nancy was with us and marvelled at Susie's progress because she hasn't seen her since last week. Susie's hair was brushed and braided yesterday (thank you, Stylist Sarah!) and the resulting ponytail today was bushy and beautiful. She wore a "regular" blouse today, which means a denim shirt that actually fits her, NOT big enough to wrap loosely around that dratted halo. Former halo, now resting in pieces on one of our dining room chairs.
She's watching the DVD of "Newsies" and planning little excursions to Virginia, Connecticut, and especially *the mall* soon--of course sporting her nifty electric wheelchair!
We're just about at the point of starting to write thank-you notes. Be patient with us. Until then, a big THANK YOU from Miss Susie Herself, Sarah, Julie and me.
You have touched our hearts.
Love, Jack
:) J
Thursday, July 31, 2003 1:00 PM CDT Another day, another miracle.
Just in case anyone thinks we don't have enough drama in our lives, Sarah decided to chop off all her hair and make what was left "Strawberry Blonde." Well! And I transferred Susie from her wheelchair into the front seat of my little Mystique today--the Physical Therapists said that I did a "perfect" job. (But don't tell Julie. You know how she gets.)
Meanwhile, my mother was taken by ambulance to the hospital for the second time in four days. My stepfather has been in and out--the first time being transported with my mom in the same ambulance! Oh, boy. My brother's youngest child is flying home from Arizona tonight, and I'm singing the psalm at a healing mass at St. Mary's at 7. Right this minute Sarah is watching a DVD (thanks, Jim and Gail and Beth!) with Schmoozie, Julie's stuck in traffic en route to a rehearsal for a wedding, and I'm trying to find my desk and catch up on correspondence.
That's about enough drama for one day for us, don'tcha think? As always, Susie has been a real trouper through all this and is smiling all the dang time. Even the front desk refers to her as "the FAMOUS Susie Carr," and the nursing staff in the Rehab Unit all love her. Well, of course. She's hard not to love.
Until next time: Keep the faith, keep praying, and keeping smiling!!!!!
xo
:) Jack
Wednesday, July 30, 2003 8:59 PM CDT IT'S OFF!!!!! YEAH!!!!
As you can imagine, Miss Susie had a great day today starting with the removal of the halo (a less-than-two-mintue and not-too-painful process). She now has a collar to wear for 6-8 weeks to help support her head as the muscles in her neck regain their strength and to give the neck a little more time to heal. She has much less discomfort in her shoulders now and is pushing herself even more in therapy.
She learned to help herself roll so she can now do position shifts throughout the night by herself. Eating is much easier for her. She ate well both at lunch and supper and had a rootbeer float for evening snack. We spent almost an hour outside after dinner before her neck needed a rest. She is able to sit more upright in bed now, which is also good for her muscles.
The next milestone - a real shower!
Have a great evening and a wonderful Thursday. Bless you all - your prayers are making a difference. We have a beautiful young angel (with only one halo!) to testify to the power of prayer.
Love, Julie
Tuesday, July 29, 2003 8:45 PM CDT Well, our little angel still has two halos! X-rays were done early this morning, but the doctor was evidently in surgery all day. Let's hope for tomorrow!
A few more spots of feeling today - two on the right leg and one on the left. Now the two legs are equal for all those of you who told her to even things out! See, she listens to you guys better than to her parents - typical teen! We have a skeleton poster that we color with each new spot.
Susie went out driving with her rec therapist today and then had to do some coordination between right and left hands today. Had to pick up little froggies, put them up to her nose and then into a bucket using both hands. Quite a sight to see! Then they taught her how to put a marker into her fingers so she could write without the special brace. She did well on that too, although she did not have her special glasses on, so she couldn't really see what she was writing.
She did not eat any lunch, but ate a good breakfast and another 1/2 sub for dinner. Guess those subs are a hit. Grandma brought spaghetti (no sauce, just margarine and shaker cheese) for tomorrow along with her famous peanut butter cookies with chocolate chips. She ate one of those too!
Looks like the coming home date will be the end of next week. We will keep you posted on that.
Until tomorrow - God bless you and keep those prayers coming. We still have lots of blank spots to fill in on the legs and trunk before our work is done!
Love,
Julie, Jack and Sarah
Monday, July 28, 2003 9:15 PM CDT Well, today was a day that will certainly be remembered for a long time. I debated going into details with all of you, but decided you have been there through thick and thin.
Today while Susie was on her way to PT, she had her first experience with a very serious condition called autonomic dysreflexia. AD is very common in spinal cord injuries and in short happens when a pain signal in the non-feeling section of the body is not responded to by the brain, so the body does some strange and dangerous things including getting dizzy, blurred vision, a pounding headache and worst of all - a sharp rise in blood pressure. So, for all of you that visit with her, immediately lay her down with her head raised as much as possible (to lower the blood pressure), take off her clothes (yes, AD can be caused by tight clothing or shoes), and call for help - a nurse in the hospital or 911 if at home. She will need to be cathed immediately when the ambulance arrives (bladder spasms are another common cause). The paramedics will need to know that AD is a possibility as many will not recognize it. The bad news - it is very dangerous and can cause a heart attack if not properly treated. The good news - the first one happened in a safe environment where she received prompt treatment and reassurance that now she will know what to expect.
The rest of the day, Susie just rested in her bad. An AD episode tires the patient out, just as a seizure would do. Of course, she was disappointed because she wants to be able to do as much PT and OT as possible to get ready to come home.
They needed more X-rays before the halo can come off. As of 9:00pm when I left, they had not gotten to her - many serious injuries tonight so they just did not get to her yet. Hopefully they will do it tonight or early tomorrow so the halo can come off as originally planned tomorrow.
With all the days happenings, Susie is still in good spirits. Her attitude never ceases to amaze me. God truly is working many miracles through her.
I promise happier news tomorrow - maybe a message from the princess angel (sans halo) herself.
Love and blessings,
Julie
Sunday, July 27, 2003 9:49 PM CDT Another week gone by (or a new one started!).
Susie, or should I say - hotrod, was on the move again today. We drove outside and spent almost an hour in the warm, humid breeze making a few phone calls (including surprising grandma on her cell phone as she was on the way to visit) and just enjoying the breeze. Elevators are not too scary anymore. She drives in, then turns around so she is facing the door (on all four wheels - not two - Mrs. J!) and then we let the rest of the people on to the elevator. She is way too proud of herself and everyone around keeps telling her how well she is doing. Her head may end up weighing as much without the halo as with it if people don't stop telling her how fantastic she is!
Susie has been trying to nap during the day. All this new activity really tires her out. So, if you come to visit and there is a sign on her door, you will find me in the lobby or cafeteria giving her some peace and quiet. Feel free to come find me!
I am sure her therapists have a jam-packed week planned for her so she will be ready for the next step in her recovery. I will be putting together a list of therapy-type activities all of you local admirers to work on with her when you come visiting once she gets home! No time for wasted moments when we have goals to accomplish!!!
Until tomorrow - pleasant dreams to all you angels and thank you from the bottoms of our hearts for all you continue to do for all of us.
Julie, Jack and Sarah
Saturday, July 26, 2003 8:35 PM CDT Today was a great day to practice wheelchair skills! Susie only had one session of therapy and got to sleep in a little and take a nap. So, we actually had two driving sessions - neither one was traumatic and (Mrs. J!) no headlines evoling from either one!
The second session saw us trying elevators once more. Susie figured out that when people tell her to go ahead, she should say, "Thank you, but could you go in first and hold the door open?" We also practiced doing 180 turns inside the elevator - much skill required so as not to bump ankles or toes - and were successful a number of times without assistance from mom. We went up to the sixth floor ICU (where we were from June 30-July 4). One of the nurses, Mike, was so thrilled to see how well Susie was doing, he asked to give her a kiss on the cheek! Then we went back down to the second floor for therapy, visited some relatives in the dining area and get this - drove to X-ray on the third floor to see if the halo can come off! Now we are thinking it will be Monday instead of Tuesday that we lose those extra 15 or so pounds! You should have seen the smile on Susie's face!
Susie ate a good breakfast feeding herself almost a whole bowl of Rice Krispies and milk and a good dinner. She had a peanut butter cookie snack before dinner and a strawberry shake for a nighttime snack. Things are definitely looking up in the eating department.
At the end of the day we had a visit from a wonderful woman who had an accident at the same age as Susie. She is now married to a wonderful man and lives a very rich life. She is still in her wheelchair, but has not given up hope of walking someday. Susie had the chance, as did Jack and I, to ask her some questions that she has first-hand experience with.
All in all - another great day.
Keep the prayers coming. Susie will be home soon and hopefully able to spend some time at the computer herself. What a great day that will be!
Love,
Julie, Jack and Sarah
Friday, July 25, 2003 9:07 PM CDT Okay supporters - you asked for it. Here is a message from Susie herself (dictated to me - typing is still quite an issue and the facility's computer is way slow!)
Hi everyone! I heard yu wanted a message from me - so here it is.
Today has been a much better day than yesterday was. I learned how to play pitch in OT - my friend, Megan, played too. I got a brand new toy - an electric wheelchair! I had a couple of scares in driving - not so good at that lately (ha, ha!) Practically took off my ankle after almost getting shut in an elevator door and nearly knocking my halo off driving through the hospital front doors, which aren't quite wide enough for new drivers! But, I will get better - next week hills!
The best part of the day was getting my hair washed. I made them save some rinse water so I could see the grit - UCK! That's what four weeks of now showers gets you! Next Thursday - a real shower - can't wait to see the rinse water from the rest of my body!
Thanks for being there to pray for me and lend your support. I love you all!
Susie
So there you have it! Tentative release day is August 4th although we do not know yet if she will come home or go to a sub-acute care facility in Cortland. In any case, it's one more giant step. By the way, she can feel the base of the fourth toe on the right foot now - good news for those of you who thought she was favoring the left!
Until tomorrow and God bless you,
Julie
Thursday, July 24, 2003 9:55 PM CDT Good evening all!
First of all, let me promise you that tomorrow's update will come from Susie herself - lest I be lynched by all you supporters out there! We were going to do it today, but it was a day of X-rays and IVP of the kidneys to establish a baseline, so she was pretty tired and a little perturbed because she did not have any PT/OT. They found an electric chair for her to start learning to drive and she didn't have a chance to do it - an excitement she was looking forward to.
We did get outside for a little while. She is also on an IV antibiotic still, so we have to be in the room every 6 hours for that. We had some nice mommy-Susie time after dinner watching one of her favorite movies on DVD - Charlotte's Web.
No new feeling spots. I need to get a huge skeleton and start plotting the feeling points so I don't forget any of them! The more we work with them the stronger the feeling gets.
Eating is getting better. She had a full cup of Kraft mac and cheese for supper. A rootbeer float for afternoon snack and some of grandma's pumpkin pie for evening snack. She still doesn't want to eat, but knows she must. I am learning to make killer shakes and floats with double ice cream to fatten her up and provide the calcium and protein to rebuild her bones.
So - until tomorrow and a message from the princess herself. Thank you and please continue to pray for her patience and determination.
Love, Julie
Wednesday, July 23, 2003 8:56 PM CDT Another banner day for the Carr Princess02!
Susie was quite tired this afternoon when I arrived. They put her on a new medication for bladder spasms - not sure she needs it because it turns out she has another infection! So, being the pushy mom I am, I will check into that tomorrow now that she is on antibiotics.
Things perked up after she found out in her spinal cord injury session that she was being sent home earlier than originally planned. We don't have a date yet, but pray that the house will be done for her or that there is a step-down facility here in Cortland where she can stay if needed. I'm not sure she is ready to be off medical care yet, although none of us can wait until she comes home. Then as we put her back in bed after an hour outside and a rec therapy session with the pets and another PT session of arm strengthening, she thought she felt a tingle in her right thigh. Of course, with her TEDS stockings and leg wraps she wears during the day, it's kind of hard to feel anything. So, when we took off her stockings for a break, I had a chance to massage her legs and she felt the tingle again. It is about in the middle of her thigh on the outside. It is too early to tell how big a section, but if the new feeling follows the others, within two days it will be quite specific and strong - not just a tingle.
Tomorrow I will ask Miss Susie to dictate a note to all of you. I am sure she will be more than pleased and quite honored that so many of you asked for her personally!
Thank you for all you are doing. This is such an amazing outpouring of support. Know that all of us Carrs are in awe and very thankful that so many people love and care about our Miss Susie. God bless you all!
Love, Julie
Tuesday, July 22, 2003 8:41 PM CDT Today our Miss Susie was quite the "queen of the court" hosting a bevy of friends! It is amazing how they can divert her attention away from any pain and discouragement she may be feeling.
One of her best friends put a piece of tape on her mouth (yes, I said best friends) and Susie was able to get it off herself! So - I guess you could call it therapy, although Susie calls it "pick on the paralyzed!" She still has that uncanny sense of humor.
We met with the architect to go over plans for the new addition. Susie was very pleased with them - especially the idea of a skylight in the bedroom so when she is in bed she can look up at the sky, since the windows will be facing the garage next door. Many, many people have volunteered their help in the construction and in donating materials. We are beyond grateful to all of them.
Susie worked very hard in PT today working on two machines that will help build up her arm strength. She did very well on both. According to the PT/OT staff, she is progressing much more rapidly than anyone had thought. She is losing weight, but I think her eating will get better once she is out of the halo and swallowing is easier. She will also be working harder once the halo comes off and will probably get hungry. Right now, I make double ice cream milk shakes at night which provides some fat calories, protein and calcium. For now, that is a good thing.
The parts of her leg that she has feeling in get a stronger sensation each day - also a very good sign.
As always, thank you for your continued prayers. She is determined and with our help and prayers and your added support and prayers, there is no way that she will not reach her goals. Lots of love,
Julie
Monday, July 21, 2003 8:46 PM CDT Another milestone day in so many ways!
Tonight after supper, Susie felt me moving her left leg when I grabbed behind her knee. It was just a faint tingling sensation. After I took off her ace bandages and special stockings, she was able to feel even more. So now we have the left foot in a line from the fourth toe to about 3" above the ankle and then a jump to a 2" spot on the back of her knee. These are both pretty localized, narrow areas, but they are consistently responding. One of the nurses who hadn't seen her in a few days was very excited and said to Susie, "I know you'll be walking someday!" Susie replied "I'm gonna so come walking back here. Hell no - I'm gonna run up and down these halls when I come back!"
We got the plans from the architect for the new addition. Susie will see them tomorrow and I am sure, will absolutely love them. So many community members and businesses are donating labor time and materials for her - it's just an amazing testimony to her strength and perseverance.
We are counting down the days for the halo to be removed - next Tuesday if all is good with the X-rays they take on Monday. Susie is rather excited about that, to say the least!
We also got a neat letter from a Miss America friend out west. She thanked Susie for strengthening her faith by giving such testimony to us all with her faith in miracles and willingness to believe in God through such a trial as she is experiencing. I think that is true for many of us.
Okay, I'm done for today. Sorry this was so long, but lotes of neat things to report. As always, thank you for all your prayers and love.
Julie
Sunday, July 20, 2003 9:12 AM CDT And today is Sunday, Sweet Sunday!!! And it's my turn to try to give you a little update.
Julie jumped up to the hospital early to do the breakfast regime; I'm doing house-type errands before joining her.
Once again at mass this morning our priest called forth the eucharistic ministers who take communion to those unable to assemble in the congregation. At one of the two weddings I attended yesterday, I "stocked up" on enough hosts for Susie for the week, just in case no deacon or priest or chaplain ambled her way. Father John laid hands on all of us ministers who came to the front of the church and he grabbed my arm and shook me during his blessing over me. I brought him a gift today, color copies of 2 of the digital photos that our friend and neighbor Jeff had taken of Susie in that darned halo. I think maybe it relieved him to have tangible proof that she looks like herself...and is characteristically smiling in both shots.
Meanwhile, the can and bottle drive that "Deeznuts" basketball team organized for Susie was a big success yesterday. We took 10 huge mylar get-well balloons from her room as the "centerpiece" to attract business, and it seemed to have worked just fine! Her good friend Tommy Barber is our hero on this one, and our whole family is grateful to him and his crew.
I'll tell you more soon about a new-found friend, Andrea, and a long-lost friend, Helen, both adults living rich and exciting lives in wheelchairs. Also Mark, a policeman whom Julie and I have known since he was in high school several years ago. These folks are profiles in courage and generosity. They will no doubt help Susie look into her future.
I will admit to choking up a bit during church again today when Susie's name was called out during the petitions. Hearing your child's name in that context is heart-rending, as many of you will recognize. But to be honest, it's hard to cry and feel sorry when there is so much support all around, everywhere.
Two of our best buddies, Rick and Andy, Drove to Egypt yesterday in the wee hours to take down our "Sarah tree," a pine that we had planted from a matchstick-sized seedling when Sarah was in kindergarten. It was so big and so overgrown that we couldn't get lights all around it for Christmastime, and it was eating up sidewalk and driveway alike. It's gone now, to make room for the little stunted "Susie tree," another pine that has been dwarfed beween the side of the house and an azalea. We'll gussy it up with yellow ribbons for Susie's homecoming, and I'm looking forward to doing the Martha Stewart treatment. (Julie has granted me charge of "flower detail," and I guess this falls under the category of decor. I could've been a florist! LOL)
A dear friend and I had a long conversation on our back deck last night, beneath a Maxfield Parrish sky and magnificent stars. A crystalline kind of night. A grand night. The moon was half-full. Or was it half-empty? It was a poignant discussion because we both realized that this deck's days are numbered--to make room for the new addition to the house. Behold, the old is passing away before our very eyes.
Thanks for hanging in there and continuing to pray. What we need now more than anything (and we need groceries, and gas, and stamps, and...sometimes I misplace my toothbrush or forget where my keys are...) are your unceasing prayers. All the rest will fall into line. Please keep praying like nobody's business.
Love to you all.
:) Jack
* * * * *
Updates:
1) Sarah asked me to remind you to send your photos for Susie.
2) Julie says to tell you that Susie had a great day, busy with many friends and a gift of a new DVD player.
Saturday, July 19, 2003 10:00 PM CDT Happy Saturday to all!
Susie had another eventful day. Because it was a weekend, she only had one physical therapy and one recreational therapy session (as opposed to the three hours she usually has each day.) Her weekend therapists were quite impressed with the progress she has made in balance activities since last weekend when she could barely hold herself upright on the mat. She played Connect Four with the rec therapist and was able to pick up the checkers and place them where she wanted - not an easy task when you have to wear special "prism glasses" to be able to see down! Of course, we did lose one checker down the front of her vest, which fell out when we moved her back into bed.
Her neck is still very tight and needs lots of massaging. We discovered that using ice instead of fingers works really well.
We took a field trip to the ICU where she spent five days. The nurses and secretarial staff were very pleased to see her. We also went to the cafeteria so I could get something to eat. While I was making my salad an older lady approached Susie with lots of halo questions. It turnes out that her 74 year-old sister-in-law is in one for at least 12 weeks. They did not do surgery and she is lying flat on her back. So, Miss Susie did a little ministering on the side today.
There is a very sick little girl in the rehab center. Susie asked that we all say some extra prayers for her. I don't know exactly what her illness is, but I will let you all know once I have a chance to speak with her parents. Thanks for adding those prayers to the Susie chain and for all your messages of hope and encouragement.
All our love and gratitude,
Julie (and Jack and Sarah)
Friday, July 18, 2003 10:12 PM CDT Another event-filled day in the life of Susie Carr!
Because her shoulders are still very tight from overwork on Wednesday, Miss Susie did some new and different things in PT/OT. She now has a special brace to wear on her hand so she can write. Her first sentence - "I (heart) you mom," second - "Thank you angels," third - "I love my daddy." We have homework to practice over the weekend! Also the OT made her two special splints for her hands with a point on the end, so she can do "one-finger" typing on the keyboard. We will get her internet access and she will be set to IM!
Susie's feeling in the outside of her left foot has moved to just below her next to the last toe to about 5" above her ankle. She is of course, very excited about this.
Her stitches came out today - not real pleasant, but another exciting step in her recovery process.
The architect came today to measure the house and draw up the plans for the new addition/ramp. Susie's OT told her that they are looking at mid-August to the end of August for her discharge depending on when the house is ready and how well she can learn to be as independent as is possible and when her wheelchairs arrive. Of course, that was exciting news to her.
So, once again I must thank you for all you are doing. Susie makes me read every note every day and finds real strength in your prayers and thoughts.
Julie
Thursday, July 17, 2003 10:15 PM CDT Good evening all.
Susie never ceases to amaze us - she is such a put together young lady! The reality of her situation is hitting, but she is coping in a very mature, and optimistic way. She looks forward to going back to school, is trying to figure out how to keep singing and keep her major with her present limitations, yet knowing that she IS going to get better. She is gracious to her nurses and becoming very assertive about her care. Tonight she spoke to two of her surgeons with the demeanor of a grown adult - she wanted some answers and they gave them to her.
Today was another good day. Susie worked so hard at PT yesterday that her neck muscles were pretty sore today, so she had to lay back a little on the arm workouts. She spent a little more time in bed too, just to relax her shoulders a bit.
I am learning to do a lot of her care which makes her feel much more comfortable and gives us some quality time at night.
No more new spots of feeling, but the spot on her left foot is getting much more sensitive. She can tell if we are touching it in circles or back and forth. The head rehab doctor was impressed, but not as much as the nurses. One day at a time!
I wish I could explain to all of you how wonderful it is to know that so many people are praying for Susie and supporting the family with all your messages and thoughts. It is a feeling that is beyond words - but one I hope that none of you ever have to experience. Thank yous just don't seem adequate, but that's all I have until I can send you a picture of Miss Susie in her first starring role!
Bless you all.
Julie
Wednesday, July 16, 2003 8:52 PM CDT Well, angels, your prayers have done it again. Little miss had a great day today!
Her arms are getting stronger each day. Sometimes she can even push herself up in therapy when they try to tip her over. (If the therapists push too hard she accuses them of participating in "pick on the paralyzed month!")
She ate something at all three meals, had an Ovaltine milk shake for afternoon snack and vanilla pudding for an evening snack.
The parents of the wonderful young man who authored the article for the local newspaper wrote a letter which I read to her. It seems as though he was in a serious accident four years ago with the same prognosis. Well, he finished college and is walking! Susie called it her "miracle letter." We posted it with some bright colored ribbon where she could see it when she gets down to remind her of someone else's victory.
This evening as her friend Jenn was massaging her feet, she was able to feel tingles and warmth on the very outside of her left foot - what a boost in spirits that was. Jenn and I "tested" her to make sure she really could feel and she passed with flying colors!
Tomorrow we are going to start learning how to write again. That should be an experience. I think I will keep all the attempts for her to look back on and laugh at down the line!
So, angels, you came through once again. I know there will be more rough days, but with your continued support I am sure they will be fewer and farther apart. With much love and blessings to you all - Julie and Jack (and Sarah too!)
Tuesday, July 15, 2003 9:44 PM CDT Good evening, angels.
Susie had a rough day today. She asked the doctor if she had a complete or incomplete injury - to which the doctor replied complete. This means there is no feeling at all below the injury. (Incomplete means that there are spots of feeling below the injury.) She is thinking that complete will make things harder for her and is not sure she can deal. Now, we all know she will fight to bring everything back, but she is afraid she will lose her strength. Then to add to that minor setback, we had to order her wheelchair today. She needs to have a special one fit to her that is electric and has some special adaptations. Well, Miss Sarah pulled through and gave her a great pep talk - really rose to the occasion. Just pumped a bunch of strength and encouragement directly into her veins! She was a true big sister.
On a brighter note, as I was doing a transfer today, Susie put her right arm around me and squeezed and said, "I love you mommy!" It was her first hug since the accident - a real neat feeling. She did it two more times during transfers. I guess that is the advantage of being the front person in the whole transfer process!
Her arm strength continues to improve. We are working on manipulating the fingers whenever we have time alone. I told her that we would start writing her name tomorrow and she agreed to try.
I am learning all kinds of things to help her transition to home. Some that she will eventually learn to do herself once the halo is removed and she regains her sense of balance. She really wants to be independent and I am sure that drive will pull her through.
Please keep on praying! It helps her through the rough times to know that so many people are asking for God's help to give her strength, patience and courage. May He bless all of you as you have blessed us.
Julie and Jack
Monday, July 14, 2003 11:05 PM CDT A good evening to a great day!
Miss Susie had a wonderful day today. She is starting to feel very comfortable with the nurses and is asking questions that really concern her. Today she was assured that yes, when the time comes, she will be able to have children. Evidently this was very important for her to know. Of course, I won't go into the "court" she held later this evening as she explained the facts of life to her bevy of friends. Suffice it to say, I chose to leave the room and go have a few quiet moments to myself!
Susie fed herself breakfast of cream of wheat and lunch of chicken noodle soup (we need to learn to eat food that is easier to control on a spoon!) and had a good lunch. She can now itch her own nose - one day early - that was tomorrow's goal and can touch her eyes when she is reclining in bed. She is so proud of herself she practices all the time. I personally think she likes being on stage.
I learned how to do the transfer from bed to wheelchair and back today. I think she likes it when I help because she trusts me. The nurses and PT's said I was a very quick learner. Little does Mr. Jack know that tomorrow morning will be his turn to learn how to do the back transfer (I learned the front since I am not as strong).
We had our first spinal cord injury group and again, Susie asked some very good questions. The staff continues to be very impressed with her determination and bubbly personality. I just hope they don't get too used to having her around!
Keep the notes coming - Susie loves to hear from you each day. I figure she will be real busy when she comes home emailing all of you to express her thanks personally!
Thanks for all the help you play in making these great days. We know that your prayers are being answered in each small miracle we see.
Love, Julie
Sunday, July 13, 2003 8:21 PM CDT Happy Sunday, everyone!
Miss Susie had another good day today with both Jack and me there most of the day. She got into her wheelchair after lunch and stayed through dinner. We went outside to get some sun, then some shade, spent some time in her own room, ate dinner in the dining area and then went back outside to call some friends. The hands-free phone attachment works wonders and she is able to talk without me having to hold the phone to her ear.
Susie got a little philosophical with us saying that she is learning to appreciate every little thing that life has to offer. She also admitted praying more than she ever has in her life. We told her what a good role model she is for many teens and others as well.
Sarah would like me to remind all of you that she is putting a book together for Susie of all your well-wishes. If you could send her a picture of you and/or your family, she will be able to see what her many angels look like. You can send them to:
Sarah Carr
3 East Main Street
Cortland, NY 13045
Love, Julie
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Hey, gang. Jack here.
Many of you have asked about what the four of us look like. I've given Jeff photos to share with you--risking the wrath of both girls in doing so! So keep looking at the photo gallery.
Today (beyond what Julie has reported here) Susie was able to "feed" herself a pill and is moving her arms really well. She's working on grasping with her thumb and forefinger-- we call it doing "The Lobster." She is moving her arms better and better, stronger and stronger. We joked of course about her being able to pick her own nose soon!
I don't want any of you to get the wrong idea. She does have somber moods, and she is discouraged about what seems to be slow progress. But today Susie entertained 5 of my Cazenovia College colleages, Julie's parents, and dear old family friends. All of them walked away impressed by how much she has improved already and all were MIGHTILY impressed by her positive attitude. As are Julie and I. It's easier to stay strong for her when she is so strong herself. We're in this thing for the long haul.
Are you with us?
I know you are.
Love, Jack
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Sunday, July 13, 2003 8:21 PM CDT Happy Sunday, everyone!
Miss Susie had another good day today with both Jack and me there most of the day. She got into her wheelchair after lunch and stayed through dinner. We went outside to get some sun, then some shade, spent some time in her own room, ate dinner in the dining area and then went back outside to call some friends. The hands-free phone attachment works wonders and she is able to talk without me having to hold the phone to her ear.
Susie got a little philosophical with us saying that she is learning to appreciate every little thing that life has to offer. She also admitted praying more than she ever has in her life. We told her what a good role model she is for many teens and others as well.
Sarah would like me to remind all of you that she is putting a book together for Susie of all your well-wishes. If you could send her a picture of you and/or your family, she will be able to see what her many angels look like. You can send them to:
Sarah Carr
3 East Main Street
Cortland, NY 13045
Love, Julie
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Hey, gang. Jack here.
Many of you have asked about what the four of us look like. I've given Jeff photos to share with you--risking the wrath of both girls in doing so! So keep looking at the photo gallery.
Today (beyond what Julie has reported here) Susie was able to "feed" herself a pill and is moving her arms really well. She's working on grasping with her thumb and forefinger-- we call it doing "The Lobster." She is moving her arms better and better, stronger and stronger. We joked of course about her being able to pick her own nose soon!
I don't want any of you to get the wrong idea. She does have somber moods, and she is discouraged about what seems to be slow progress. But today Susie entertained 5 of my Cazenovia College colleages, Julie's parents, and dear old family friends. All of them walked away impressed by how much she has improved already and all were MIGHTILY impressed by her positive attitude. As are Julie and I. It's easier to stay strong for her when she is so strong herself. We're in this thing for the long haul.
Are you with us?
I know you are.
Love, Jack
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Saturday, July 12, 2003 9:26 PM CDT Well, Susie and I met another angel today. He is another patient at the rehab unit who just had his halo removed on Monday. Tomorrow Tim is going home for a day to see how things go. If all goes well, he will be discharged on Monday. Tim lost feeling in his left side, but can now move his foot up and down. Say a little prayer for him - He still can not move his arm or walk without assistance and he has two small sons who want their daddy home! Tim made it a point to come talk with Susie after her PT session today. Susie was able to ask him questions that he knows the answers to because he has been there too. His main advice - one day at a time, rejoice in the small things and keep working the parts that work to encourage the rest of the body to follow along. He gave Susie so much encouragement today! After supper (she ate and drank well today) Susie practiced moving her arms and was thrilled to tears (literally) when she was able to open and close the fingers on her right hand without help. They still don't straighten all the way out, but they moved enough for her to notice!
Jack's little anedote about the flying paper was pretty accurate - although Miss Susie insists she wasn't laughing. If that was the case, I am not sure what the white, pearly things across her face were when I turned around! She did enjoy talking on the phone - that turned out to be a good incentive to stay in the wheelchair for a longer period of time.
The young lady is quite the celebrity in the hospital - everyone she comes in contact with remembers her bubbly smile and outgoing personality. Things improve each day - God is teaching us a lesson in patience and perserverance and the power of prayer. Just think of all her friends who are learning of the power of God and realizing that they are now his angels on earth!
Thank you all again, and a special prayer for Susie's newest angel.
Julie
Friday, July 11, 2003 10:07 PM CDT Good evening, Angels. Susie continues to amaze us each day with her "slow, but sure" progress and her uplifting attitude.
She is starting to ask questions about how we really think she is doing, how much better she will get, do we really believe she will "feel" and walk again. We continue to tell her she is doing a wonderful job, and will eventually regain all that she has lost. She just wants to be able to jump out of the bed and be her old self! Believe me, you will all be invited to her stage debut!
Today she ate well (for her) even though dad ordered her some pretty unusual meals - things she hasn't eaten in all of her 18 1/2 years! The nursing staff is convinced he fills out the menu for himself - and you guys thought my toenail painting was risky. Well, Jack has been taken off menu duty in favor of someone who knows what Susie will eat! She was not able to be up as much as yesterday in between her therapy sessions. It seems as though they need to find a way to regulate her blood pressure when they move her as it drops way down. I did take some bubbles with me for respiratory therapy when we went outside, but seemed to get a bad batch! Even I couldn't make the bubbles happen.
Susie has a great reflex action going in both feet. We put on her special glasses so she could see her feet move, because she still can't feel them. She was pretty pleased with herself!
As to all of you wonderful visitors - Visiting hours are from 5:00pm to 8:30pm Monday-Friday. After 6:30pm you must report to the front desk and sign-in. On weekends they are from 1:30pm-8:30pm. Because our Susie is so popular, all the security people know her and keep pretty close tabs on how many people are up there at a time. So, if you get there and they will not let you up, please have them call the 2N nurses' station. We will send someone down so you can take their place. Those of you who manage to make it to her room need to understand that you may be asked to make a switch with someone who has not seen her yet so that everyone gets a chance and Susie gets to see all her many admirers! Thanks for understanding this. It is important to her recovery (emotionally) that she sees all her friends and she feels very bad when she finds out that someone didn't get to see her because they were turned away.
As always, thank you for your support and all your prayers. We are convinced that God is listening to all of his angels in prayer.
Julie
Thursday, July 10, 2003 10:07 PM CDT Happy Thursday everyone! Check out the photo page for a great picture of our Miss Susie. Thanks, Jeff for coming to take them.
Susie is settling in well to her new routine. She was up out of bed for close to six hours today. Her OT figured out what was causing the pain in her shoulders and a wonderful nurse who used to make orthopedic braces fixed up a pad to help keep the vest off her shoulder blade. That should help her heal and get on with the strengthening of those muscles in her back. The OT is a non-nonsense gal who insists that Susie finish at least one thing for each meal, so eating has gone much better today. Susie is learning to feed herself again with a specially designed holder to help hold her utensils. She is looking forward to the day when she can wipe her own nose and wash her own face. By the way, she saw her painted toenails and loves them!
A little Susie humor for the day - Two new to Susie nurses came in to assist with a transfer from chair to bed. As always, the new nurses introduce themselves to the patients. After the second nurse told Susie her name, she said "We pretend to be nurses here," to which our Susie replied, "I pretend to be paralyzed!" and chuckled. I thought the poor nurses were going to wet their pants - they just didn't know what to say.
So, you see, her spirits are still high. She wants to work hard and is pushing herself as far as her little body will let her. Jack and I know she is getting so much strength and confidence from all of you. She looks forward to my reading your messages each day and is amazed that almost 4000 hits have been recorded on this site.
As always, we thank you for all you are doing for her. We love you, appreciate you and are grateful for your prayers.
Until tomorrow - Julie
Wednesday, July 9, 2003 8:56 PM CDT Good evening friends all over the world! Susie had a busy day today moving to her new room. She has a single room in the rehab unit. Jack and I decorated it all up nice and bright. She is learning to balance herself and catch herself if she starts to fall. It is very hard work with the extra 15 or so pounds on her head! She is very sore, and got a little discouraged, but she is willing to talk about it with me, so that is good. She is still having problems eating - has no hunger sensation yet and is concerned about losing more weight. We will be working with the psychologist and her doctor on this particular issue. The therapists are impressed with her drive and determination and willingness to accept pain in order to get better. Once she is on a schedule (it starts tomorrow), she will feel much better. We were able to get into the wheel chair for supper and then go outside for aoubt 20 minutes after that with five of her friends who came up together. Tomorrow they will have her up by 7:00am and start teaching her to feed herself (I hope we ordered something besides cereal and milk!) Visitors continue to make her happy, although it is important that people really keep the visits short so that everyone gets a chance to visit her without her getting too tired.
Thank you for all you continue to do. I read your notes to her and continue to be amazed at the number of people who are praying for her. You are all truly angels.
Tuesday, July 8, 2003 10:25 PM CDT Good evening all! Miss Susie had a great day today. She was in her chair sitting up for two hours including during lunch. She ate a little at all three meals - a big step! Susie's leg sonogram and chest X-rays came out fine. She just has a physical evaluation tomorrow with one of the rehab doctors to make it into the rehab program tomorrow.
Because she has not been sleeping well at night, the ortho PA wanted us to keep her up all day and see if that worked before prescribing sleeping tablets. So, we did all sorts of crazy things to accomplish that goal. 45 minutes of PT in the morning, followed by X-rays and lunch. Then back in bed. Up later in the afternoon to visit the rehab unit and scope things out. More PT (this time concentrating on her legs) after that. Then we got really desperate and I decided to clip and paint her toenails. Now here comes GREAT news! As I was playing with her toes to clip them, she kept moving them (on both legs)! Then when I ran my finger from her arch to her big toe, she moved her big toes on both legs. Now, lest you readers get too excited, she can't feel the movement yet. However, when I told the doctors tonight, they were very pleased and told me to keep making her do those involuntary motions because it keeps the nerve endings alive. So, the prayers are working. Susie was ecstatic to say the least. We tried to let her see, but just couldn't get the angle right!
In a few days, we will get some digital pictures and maybe even a short video clip to post so you can see her great personality and determination.
Keep on praying - we still have a long road to travel. Little miracles like today's give Susie hope to face the disappointing times.
We love you all!
Tuesday, July 8, 2003 7:05 PM CDT The news is good! Susie is one step closer to being transferred to the Rehab Center, right in the same facility at Upstate, Second Floor North. We are extremely grateful for the care lavished on her from everyone--from the dieticians to the cleaners to the nurses to all the many medical teams. Nurses have fought over her! Everybody has rushed to help her! Everyone loves her little infectious smile and cracks up at her sassy jokes! Who couldn't love her?
In Rehab (starting either today or maybe tomorrow) Susie expects to begin a grueling 3-month course of physical and occupational therapy. There is a wonderful staff psychologist--Laura Lawless asked about this in particular--who specializes in patients with spine injuries. Susie's incision is healing well, the bruising is subsiding, and best of all her spirits remain good.
Please keep checking here, please keep posting your greetings here, and most of all please keep praying. Or if you haven't prayed yet, now would be a fine time to start.
Folks: This is going to be a long haul. Do not be a fair-weather friend, because Susie desperately needs the support of each and every one of you, and you are legion. xo :) Jack
Tuesday, July 8, 2003 3:06 PM CDT
Tuesday, July 8, 2003 2:59 PM CDT The news is good! Susie is one step closer to being transferred to the Rehab Center, right in the same facility at Upstate, Second Floor North. We are extremely grateful for the care lavished on her from everyone--from the dieticians to the cleaners to the nurses to all the many medical teams. Nurses have fought over her! Everybody has rushed to help her! Everyone loves her little infectious smile and cracks up at her sassy jokes! Who couldn't love her?
In Rehab (starting either today or maybe tomorrow) Susie expects to begin a grueling 3-month course of physical and occupational therapy. There is a wonderful staff psychologist--Laura Lawless asked about this in particular--who specializes in patients with spine injuries. Susie's incision is healing well, the bruising is subsiding, and best of all her spirits remain good.
Please keep checking here, please keep posting your greetings here, and most of all please keep praying. Or if you haven't prayed yet, now would be a fine time to start.
Folks: This is going to be a long haul. Do not be a fair-weather friend, because Susie desperately needs the support of each and every one of you, and you are legion. xo :) Jack
Monday, July 7, 2003 9:02 PM CDT To all our friends on the website: Susie had a mixed day today. The morning was pretty rough with physical therapy (which means in and out of the chair - that is the hard part now because her bed doesn't go low enough to make things work the way they should) and respiratory therapy every two hours making it hard for her to sleep. She didn't sleep well and thinks it was the compression leggings which they will not use tonight. Her roommate went home, so there was a great deal of confusion when she tried to sleep after the PT session was over. Things improved in the afternoon. We found a set of headphones so she could listen to Frank Sinatra and nap - it worked until the respiratory guy came in again! She is not wanting to eat, that is our major obstacle right now. She really perks up when her friends come to visit and has learned how to tell them that she needs to rest. There are some really wonderful nurses on the floor who make her laugh. She should sleep well tonight with no roommate. Tomorrow they will do a leg sonogram to make sure there are no blood clots. If she is clear, then they will move her to the rehab floor tomorrow, hopefully right after her morning PT session. Again, thanks for your support and prayers. Julie
Thursday, July 3, 2003 4:33 PM CDT Susie and her older sister, Sarah, were adopted. Susie's birth mother was a petite lady and an active dancer. When she left Susie, she left no note or letter but did give her an heirloom baby bracelet which is a precious treasure. Her birth mother gave up caffeine and coffee so that Susie would be born healthy.
Susie was born premature on November 2nd. Her lungs were underveloped and she was very prone to asthma and respiratory disease. It was several months before doctors realized that she was not thriving, not gaining weight, or getting bigger because she was lactose intolerant. She could only have a predigested soy formula that was available at that time by prescription.
As a little girl, Susie was very timid in public, clinging to her mother's side. Fireworks, Santa Claus, clowns and anybody dressed up in costumes terrified her. We direct plays and musicals--Susie must have had a traumatic early childhood.
All through elementary school, Susie was a high-achieving student, quiet in class, but a plugger. She wasn't elected to any office or a part of any particular clique. At her 6th grade graduation, she got a little award for creative writing. Flash forward to the second day in the hospital when almost all the girls from her graduating class were sitting on the floor at the hospital waiting to go in 2 by 2 with their teddy bears and balloons. For the past two years at St. Mary's School, Cortland, NY there has been a "Susie Carr Be Your Best Self" Award for a student who has really put forth an outstanding effort.
Remember I said, Susie is quiet? Well, sometimes! She grew up in the shadow of her very flamboyant and popular sister, Sarah. Sarah was MVP cheerleader and captain of the varsity football cheerleading squad for two years. Susie never wanted to do be the center of attention like that. Sarah graduated in 2000 and Susie in 2002. In her very last year of high school, she went out on a limb and tried out for the squad. She made Varsity and did a great job!
Susie hates the swimsuit phase of the Miss America Pageant and says in no uncertain terms that she would never be caught dead flouncing around onstage like that. Hmmm!! During her senior year of high school, we urged her to compete for the scholarship money but even more for the experience. Pretty much to shut us up, she agreed on a whim to look into the Junior Miss Pageant. We knew nothing about it but researched it on-line. The state directors traveled 3 hours one way to inteview/audition only 3 girls from the home high school of the then-current New York's Junior Miss. Susie was the only one of the 3 to show up. Susie didn't know a soul but went through the whole routine: private interview, talent (opera: "O Mio Babbino Caro"), fitness and onstage poise in eveningwear. The two ladies thanked her and drove off. We heard nothing for several weeks--turns out they were checking her high school transcript for grades and activities. She ended up going to state competition and winning preliminary talent, the "Be Your Best Self" speech presentation award, and was named 4th Runner-Up!!!
Love to all of you Prayer Warriors,
:)Jack
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