Thursday, May 31, 2007

Gray




I was in the kitchen staring at Dear Son’s plastic glasses. It was a cup with a squiggly straw built in, that came with a lid, kind of like a grown up sippy cup if there ever was such a thing. I remembered back to elementary school when they were going to teach him how to drink with a straw. Imagine going out somewhere and not being able to drink through a straw. The challenge was that the straw would move and wasn’t stable and, with a child who can’t sit up and isn’t stable themselves, along with his oral/motor issues, it’s a problem. A bigger concern, was how to give him a drink when we were out somewhere, on a really hot day. School took on the issue of teaching him to drink through a straw and I remember being amazed that he could do it. Granted, the straw in this case was built into the glass, however it’s the only kind of glass that every worked for Dear Son. You still had to tip the glass quite a bit and get the liquid pretty close to pouring out on it’s own, but he would eventually be able to suck enough that he could get the liquid he needed, in amounts greater than a teaspoon at a time. It was probably one of the biggest contributions the school system ever made to his life, in terms of really functional behavior for him. I took this glass with me wherever we went-outings, hospital visits and sent it to school. After all, he needed it to drink. Every family member we visited had this cup in their cupboard in case we visited.

I looked back at the glasses which sat neatly in a plastic container that was stored out of cabinet, since they were rarely used anymore. I still kept two in the cabinet with my regular drinking glasses, because I used it to give him a drink of water via mouth, after I brushed his teeth, but he rarely drinks anything anymore.

Last year, after the second suspected MRSA pneumonia, Dear Son was no longer allowed to drink or eat anything by mouth, due to the risk of aspiration. Since that time, he’s been on g- tube feeds consisting of vanilla Pedia Sure. I had always hoped he might eat again but in the back of my mind, I knew that it probably was never going to be a “viable” option. That’s how it is with these kids, everything is always very gradual, very gray. There’s never a black or white to most of it, but rather, you always fall a bit short of the black or white, hence the gray.

Everything is pretty much like that. For most babies, you mark in the baby book, the day they rolled over, or the day the walked for the first time. With special needs kids, or at least Dear Son, there is never “the day”. For example, it took many years before he could even bear weight. And then, they tried multiple walkers for him, the biggest issue being finding a walker that didn’t require the use of your hands or arms, since his never worked. Finally, in elementary school, they found a walker that worked for him. It had supports that went around his torso to hold him up. The therapists would help him and walk with him it the walker until finally, he could take a few steps in the walker without them touching the walker. One day, when he was around ten or so, he actually could walk with me holding onto his bicep very firmly, without a walker and just his AFO’s (leg braces) on. He eventually took one step on his own one day. So what day is it that he finally walked? It’s all kind of gray.

And then now, I have his AFO’s. They are sitting on a shelf in his bedroom. He hasn’t used them in over two years now and I suspect they may not even fit anymore. I don’t bother trying them on but yet, I’d feel a bit guilty about throwing them out, after all they were kind of expensive ($2200). So they sit there. Dear Son hasn’t been able to weight bear (stand) for over three years now. He has a progressive degenerative disease so it’s not like he’ll ever stand again. I took him to the Orthopedic Surgeon a few weeks ago to see if he needed to wear them just to keep his feet straight however he didn’t think it was necessary. So I guess I can throw them out.

With Dear Son, you spend a lot of time waiting for the big day to come, the day they might stand, the day they might walk, the day they might drink on their own, but the day never really just comes. You have a lot of gray in between until you wake up one day and think, “oh, he just stood up by himself”. You want the black and white so much but when you finally achieve the success you’ve waited for so long, it’s really anti-climatic.

It’s just as climatic winding down, except it’s different. As Dear Son’s mother, I always feel I should be the one to champion or embrace all of the possibilities for him. So when his skills dimish, you take them away gracefully, by moving them out of direct sight as in the glasses or leaving them on the shelf, like the AFOs. It would seem a bit harsh to throw away the AFOs right away just as it would to toss away all of the glasses as soon as he started the g-tube feeds. Instead, you acknowledge the gray, leaving the glasses and the AFOs on the shelf, until they give you sign that they are no longer required. And that’s were it gets messy.

I was reading an organizing book last week, as I normally do, since it’s a hobby of mine. At one point, the author talked about persuading a woman to get rid of one of her kid’s things that was sentimental to her as in things that represented strong memories to her. He said the reason that it’s hard is usually because we don’t want to get rid of the memory and by losing the item, we are afraid we will forget the memory. He goes on to talk to this woman about her kids and the memory of her kid to this particular item. Then he says, “We talked about her kids, and how the best memories weren’t limited to the past. They had big memories ahead. New memories-big birthdays, graduations, and transformations were down the road for all of them.” And therein lies the dilemma-the best days or best memories of Dear Son are not ahead of him, they are behind him. And that’s where the gray comes in. Sometimes, gray is good. It’s beats black any day.

*Photo of Dear Son's plastic Sip-A-Mug.

8 comments:

Anonymous said...

Can the braces be donated or anything like that? You're getting rid of them, but you're also helping someone else, and that is a wonderful thing.

Dream Mom said...

Anonymous-No, the AFO's (braces) are custom; they are created from molds of their feet and legs, otherwise, I'd be happy to donate.

Clover-Elf said...

I'd be interested to learn more about what your Dear Son learns in school; I've read Torey Hayden's books about the Special Ed classes she taught (and ended up in a sort of Special Ed myself after a learning-disability diagnosis... go figure), but never heard much beyond that.

As for the rest... e-hugs to you.

Heidirific said...

Dream mom,
Wow, I can't even imagine how difficult this all is for you. I know it may sound cheesy but the blog will also be a wonderful memory aid for you and tribute to Dear Son. As for the AFOs, I know that they are custom but it seems like they should be able to be donated somewhere, even if to be melted down and made into another pair. Maybe the Shriners would have some ideas? I don't know if there are any drives like this for 3rd world countries that could use them, even if they don't fit perfectly they may be better than nothing for a child somehwere.

jennifergg said...

Beautiful post. I understand the gray; people will ask about first words, or first steps, and I don't really have an answer. It's not movement in a straight line...some things appear, then disappear for a while, and I of course hope they come back. Maybe I'm living in the gray? :) Truly, it's better than black.

Anonymous said...

I am in a very different situation, but I can't get rid of my daughter's dafos either. They just sit there as some weird reminder of a time and mental place that I can't even put my finger on...

Dreaming again said...

I just posted about knowing that the time would come, but not really expecting it to come, with my husband's disabilities.

Tonight, I went into the bedroom and looked at his cane, and I just sat there ... unable to cry ..but unable to move.

He never ever should have been able to use that cane, he should have been wheelchair bound and bed bound ..at the very least crutches and braces ... and yet, he walked, and only sometimes with the cane ...

Yet, when he comes home ... IF he comes home ... in 4 .. 6 ...8 weeks ... will the cane ever get used again? Are we talking wheelchair and oxygen ...or are we talking bedbound and machine driven breathing? we simplly don't have the answers ...

All we know is they never expected him to live when he got polio at 3 and was in the iron lung and it so severely effected him. Then again as a teen. Then in his 20's they told him he'd never make it to 35 ... and then 9 years ago, they said he'd not make it another year ... and then he turned 50 ... and then 51 ... and now ... what else could they be wrong about? When will they be right?

Sorry for taking up your blog to ask such questions. Not everyone understands, if you need to delete them, I will understand.

Karen said...

I am learning about the gray too...

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