Sunday, March 26, 2006

Full Tilt

I was very excited all week. Friday would be the day that the wheelchair vendor would show us the new “tilt” wheelchair. The problem we had, was finding an “adult” tilt wheelchair that could be taken apart easily and transported in the trunk of my car, versus taking it in a wheelchair van which I neither had nor could afford. The wheelchair vendor had found a manufacturer that had a chair that met these requirements. The manufacturer offered to send the chair via Next Day Air to the school so we could see it.

Every day, I spoke to Dear Son on how exciting it would be. The plan, was that the vendor would come to Dear Son’s school and meet with his Dad and I, along with the physical and occupational therapist, to discuss Dear Son’s needs. He would show us three chairs. Of particular interest, was one of the wheelchairs, which could be taken apart easily and transported in the trunk of my car. Dear Son neither smiled nor shared my excitement for the new chair. I explained to him how great it would be that we could continue our walks this summer and it would be more comfortable for him. But he never wavered and stared straight ahead.

The visit went well and the new chair was selected. Unfortunately, it wouldn’t be ready for months, due to insurance approval and all the customizations required. We were just finishing up when the physical therapist asked me about Dear Son’s gait trainer which was sitting in the school hallway. She explained to me that the school could no longer store his gait trainer and asked if I would like to donate it to the school’s Special Needs Program since Dear Son doesn’t use it anymore. “No”, I said quickly. I immediately dropped my head hoping she didn’t notice the flush in my face. She explained that I would need to pick it up and take it home as soon as possible because they no longer had room to store it. I looked up again and said, “O.K.”

Inside, I was dying. I was not prepared for this moment. The excitement of the new chair quickly vanished with the mention of the gait trainer. Dear Son had not used the gait trainer since early 2004, almost two years ago. Back then, Dear Son could walk on his knees but could walk on his feet with the aid of the gait trainer that he used daily at school. He was quite good in the gait trainer providing he had his AFOs (leg braces) on. He could actually run in it and the physical therapist always had to tell him to stop or slow down because he liked to run to the windows to look outside. He also liked to come to a “crashing” halt where he would bang into the window or wall and then grin with delight. He thought that was particularly funny. We had to make one of his IEP (Individual Education Plan) goals to listen and not run into the walls; they called this “planning”. There was a fine line between teaching him to be respectful of the property and containing his excitement of being mobile and able to walk. His turquoise blue eyes would light up like they were on fire and his face would glow. The image was quite striking against his nearly jet black hair. He was so proud to be able to walk; it was like he was a different man although he was only a boy at the time.

Dear Son wanted to walk more than anything for as long as I could remember. Of the three therapists-physical, occupational and speech, the physical therapist was always his favorite because they would work on walking. The other therapists at school used to get depressed because he was so excited to see the PT but never them. Dear Son endured endless physical therapy sessions and hated doing all the required exercises but loved it when the word “walk” would be mentioned. We had the hardest time finding a gait trainer initially because Dear Son has no use of his hands/arms so a traditional walker (gait trainer) would never work. The therapist finally located one with a torso strap and Dear Son was on his way.

I remember the first time I actually saw him walk in the gait trainer. He was about 8 years old I believe. It was the oddest thing because it was the first time he ever did anything on his own, without my help. I kept wanting to help him but I knew by the smile on his face that I needed to leave him alone and let him show me how he could do it. He was so proud.

After his multiple hospitalizations in 2004, Dear Son never walked again. Not only hasn’t he walked, he never stood up again, nor will he ever. It was last summer when his pediatric neurologist had “the talk” with me about Dear Son’s deterioration and explained that he had a degenerative condition related to his gene defect and that he was never coming back. I have learned to accept that but I was not prepared to deal with the gait trainer. Getting rid of the gait trainer, is admitting that Dear Son will never walk again. It means I will never see the fire in his eyes, the smile on his face or the glow when he runs to me in his gait trainer.

“No, I said.” “I will take it home”. So with a tear in my eye and a lump in my throat, I made arrangements to take it home.

14 comments:

Fat Doctor said...

So, so, so good to have you back. I'm going right over to my blog to add back the link to you. As always, you and dear son are in my prayers. Funny how we can come to care so much about people we've never met in "real life." I missed you, friend.

neonataldoc said...

Welcome back. I don't blame you for keeping the gait trainer.

Danielle said...

Really, really great post. You had me hooked from the start and wrapped it all up at the end. Anyway, why I am commenting on your writting style, I don't know. Just wanted to let you know I found your blog (from Kelly M I think) and I enjoy it.
Tell dear son hello from a new fan :)

Cathy said...

I had just started reading you a few weeks ago and was sad to see you leave. I'm so happy you have come back. Writing everyday must have been a great inconvienence with everything else you must have too juggle.

Writing can be wonderful therapy and helps us keep our perspective. You seem to be able to handle everything just fine. Dear son is lucky to have such a dream Mom!

You will both be in my Prayers.

Dream Mom said...

Thank you all for your nice comments and the warm welcome back. It was appreciated.

Kelly said...

Hi! Found your blog last week, and I am hooked! (Danielle probably found the link from my site, because I posted about one of your posts, and linked to it)

I very much understand what you're going through. I, too, have gotten the "talk" from our ped neuro. It's sad, isn't it? Here we are, dealing with the "loss" of so much in our children, and then we have to deal with the little losses too, like the trainer. I sure hope the school understood how you were feeling and didn't think you were just being selfish or something.

Take care! (and please don't stop writing....we'll take every now and then!)

neuroticillinifan said...

Welcome back!

This post brought tears to my eyes. There must be so very many difficult moments for families in your situation. I too would have kept the gait trainer. Some things have a value beyond their practical use.

Wrkinprogress said...

We love you and dear son, Dream Mom. Our hearts are with you in your challenges as well as your joys. Please remember that you are safe here with your friends. I doubt you have any ideas of the number of lives you touch by being so giving of yourself to us here in cyberspace. May God bless you and dear son and provide you with the peace you need to face your days.

Mete said...

Found your blog linked through a link to a link... It's wonderful. I was sad to see that you decided to stop posting, but I hope you've reconsidered. There's no reason to close shop permanantly, and definitely no pressure to post every day, or week, or month. Only those days when you have a need to share.

Your story is an inspiration and you are a wonderful writer to boot. I will definitely be back to read more.

Dream Mom said...

Kelly, yes, it's sad but our lives are also so enriched from children like them.

Neuroticillinifan-I love what you said about things "having a value beyond their practical use". You are so right. I am going to try to find a boy who needs a walker, when I am ready.

Wrkinprogress-You always make me feel so good.

Mete-Glad you enjoyed the posts. I think I have the timing down better so I should be able to handle two to three days a week. Thanks for the nice compliment on my writing too!

Kim said...

That gait trainer represents so much more than a piece of physical therapy equipment - it represents joy and accomplishment and the memory of your son upright and walking like "a man".

Something tells me that your dear son also has a sense of humor because while it wasn't appropriate to run into the walls for a crashing halt, he sure got a kick out of doing it.

Dear son is one neat kid....

Dream Mom said...

Kim-You are right! Dear Son has a very good sense of humor. He also has a pretty good belly laugh that makes everyone laugh.

tscd said...

It's good to have hope.

Anonymous said...

PTMOM Dream Mom, I was interested in your site because I am one of those physical terrorists out there working with these wonderful children. I am blessed to know all of them and continuously awestruck by their courage and tenacity. If only all the children could get the equipment they need promptly and without pages of reasons for insurance to pay for it. I have one student that is facing the fact of no longer being able to stand, it is heartbreaking. I am praying for your family to always have each other and to enjoy all of life's humor.

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