Bird on the Street

Decisions, Decisions

4:30 pm

Well, the wheelchair man has come and gone and I’m flattened from the whole thing, but it’s done.

After reading the comments people left this morning, I was certain that I would not be happy with a stroller-type wheelchair. If we had to have special seating then I wanted the real deal–a wheelchair. I told the rep as much when he arrived and he agreed. His belief is that kids who will be good candidates for power chairs should start off in regular wheelchairs. That way, when they eventually move up to the power chair they’ll have a back-up chair for days when the power chair needs servicing.

Made sense to me.

Unlike some some other places, there are no showrooms of wheelchairs in the New Orleans area and I pretty much have to go with the dealer’s recommendation. He recommended the Quickie Zippie which come in two models: the GS and the TS. The TS has the option of tilting back to allow the person to rest. The GS can be moved by the child independently. I felt strongly that the room (the rep, the OT, and the PT) wanted me to choose the TS with tilt.

I wouldn’t agree to the TS, though. The TS cannot be self-propelled. This means that the chair would only be pushed by me and Charlie would have no chance for independent mobility. I have no idea whether or not he’ll be able to propel a wheelchair at some point. Right now I’m not sure if he has good enough use of both arms, but I hate the idea of making it impossible. And since this will most likely be his back-up wheelchair for as long as ten years, I just can’t feel good about that. When it comes time to purchase his power chair, we’ll address the issue of tilt again, but for now I’m more interested in independence. He probably won’t be spending long hours in the wheelchair at this age, so I’m less concerned about fatigue. This is a stepping stone to what we really want–some form of independent mobility.

So we went with the GS in yellow with charcoal cushions. Charlie will be embroidered in yellow on the seat. Those decisions took about five minutes, which surprised the dealer. He said that picking colors is usually the longest part of the process. I won’t get into how much it scares me that parents are more interested in colors than in the actual chair.

With the PT and OT there, there was also a lot of talk about standers, positioning chairs, and the fact that Charlie will be aging out of Early Steps in June, which is less than a year away. There will be many more decisions to make then. At that point I was pretty spent. I have some ideas regarding the stander and chair, and I’ll keep you posted. All the wonderful advice I received on my last equipment post was extremely helpful.

It’s hard to pick out a wheelchair for your child–I’m more emotional than I expected to be. Rationally, I know that this is a good thing, but my tear ducts don’t seem to get that. I also worry that this meeting is just a sign of things to come. A foreshadowing of many more meetings where my expectations for my child are so much greater than anyone else’s. I’m a little exhausted thinking about it.

Filed Underequipment

Full

10:24 pm

I’m due for a new post, but my brain is so full of ideas this evening that I really can’t find a way to get anything coherent out. I actually worked for quite some time on a post, but I’m just not quite ready to send it out into the world, so today I have nothing.

I have a medical equipment representative coming out to my house tomorrow. Charlie’s PT and OT will be present and hopefully he’ll have some ideas about what types of equipment will work best for Charlie. There are a lot of emotions and thoughts running through my head and hopefully things will be a little more settled tomorrow. Charlie’s PT is lobbying hard for a wheelchair. This is a radical departure from where we were just a few days ago, so I’m still sorting out my feelings. Am I the only one who thinks it’s silly to order a wheelchair for a two-year old? I mean, if he could use it to move himself around then that would be great, but I suspect I’ll be highly encouraged to buy some souped-up stroller and that seems ridiculous for a kid with who can sit in a regular stroller easily.

Charlie’s just a tough case because he’s so complete Moderate in his disability and his PT agrees with me so it’s not just me being irrational. He not so disabled that he obviously needs things, but he’s disabled enough that his physicality holds him back. Too add to the confusion, my husband hates the idea especially since we’d just picked out a really nice stroller that we thought would last us a few more years.

Like I said, hopefully tomorrow will bring some clarity because right now I have no idea what I’m doing.

Filed Underequipment

What’s The Point?

3:02 pm

So Barbara is doing a blog carnival as she does every year and this year I missed it because I was too busy stressing myself out over the purchase of equipment. I’d had a story in mind that I really liked, though, so I wanted to share it even though I missed the official carnival.

I’ve already shared with you guys that the days after Charlie’s birth were hard. I think it was even harder when I brought him home five weeks later. The hustle and bustle and distraction of the hospital was gone and it was just me and my tiny baby whose future was entirely unknown.

I wanted to go see a counselor and to do that I needed to go see my family doctor and get a referral, so I went to the base to get my referral. Visits to see a base doctor are never quick, so I sat and waited for quite a bit. People would come by and coo at my tiny, sleeping babe and all I could think was “get me out of here.” I was hard-core into the bargaining phase of grief at that point. I would think things like “just let him suck his thumb, God, and I know he’ll be OK.” I also asked God to send me a sign constantly. I was asking and asking and asking–it’s like I wanted God to call me on the telephone and say, “Look, he’s gonna be just fine, OK?” So there I was, waiting, asking God again to send me a sign and then this guy walks by.

You know how some people talk really loud on their cell phones? Well this guy was doing that and this is what he said:

You need to stop asking yourself why this happened to you and you need to start asking yourself why did God bring this to me?

That was the message I needed to hear.

You know, God didn’t do anything to me. He didn’t stand on a cloud, point a thunderbolt at me and declare that I’d be getting a disabled child because I missed church on a Sunday or cheated on a test in the eleventh grade. If that were the case, then surely there would be a lot more disabled children in the world. I think the universe is big and awesome and completely unfathomable. I think that trying to rationalize everything is a small view and it undermines the power of God. I remember being a kid and pressing my face up against the television (wow, I sound like a weirdo),and all I could see were bits of red, and green and blue–no distinct image. I think life is like that. All we can see is the little bit that we’re closest to and the big pictures is obscured. We’re just little specks of color in a larger masterpiece.

But I’m not trying to make you believe what I believe. Regardless of world view, I think that we all know that sometimes bad things happen to good people and it’s troubling. What I’m trying to say is that I had lost track of my faith. I’d started trying to make sense out of a world that is entirely too complex for me to fathom. If I was going to personalize it, then I needed to change my view. Stop wondering why things happen and start wondering what can be done with them. What could I do with my current situation? How could I use it to grow and become better? I needed to stop putting a judgment on something that I hadn’t really experienced. I was frightened to death of disability and really, I knew nothing about it.

I’m not saying that I immediately had an answer. I don’t know if I have the answer now. What I do know is that I needed a change in my point of view. I needed to stop looking at Charlie’s medical problems as a punishment and start looking at them as a new opportunity. I could rise to the occasion or not. I could become better or I could stagnate. The guy on the cell phone wanted somebody to change their perspective–to stop judging something as negative–I needed to do the same thing.

I still try to bargain with God sometimes–I’m only human–but it’s less fervent now, less panicked. This thing I have going with Charlie, it’s our thing. It’s an opportunity for me as well. Being his mother has made me stronger, more assertive, and less worried about the small things. I believe our journey has made me more tenacious, more faithful, and less complacent. I am proud of the person I have become and sometimes, I feel like I’m growing as much as he is.