When we consider the future for Abby we try to find a balancing act between being adequately prepared but not wasting too much time thinking about what might be. It is a hard line to walk. I want to be over prepared. It's my nature. Brian has to remind me regularly that we really don't know what the future holds for Abby so planning too much is a complete waste of time. I guess we balance each other out.
Last week we took the big kids to Six Flags. While waiting for one of the roller coasters we got "bumped" for people who came into line through the exit. We were curious why and quickly realized the answer. A young man (probably about 15) with a subtle handicap got on the ride with his family. He was super thin (like Abby), hypotonic (again, like Abby) and was "flappy" (hmm... sounds very familiar). Brian and I looked at each other and smiled through some tears.
We never thought about those moments. She can't stand for long periods of time and she can't regulate her body temperature... therefore waiting on long lines would be impossible. That being said she has every right to ride rides and go to amusement parks. So one day that will be her. For some reason this sparked a weekend long conversation about what comes next. Right now when we take walks she rides in the wagon. When we go out we ALWAYS take a stroller because she tires in about 15 minutes of walking. The wagon and the stroller work for now. But what happens when she is 5 or 6 or 12??? Will she have to use a wheelchair in these instances? Will she need a crutch? Will she grow strong enough that she can persist longer distances?
There are so many "what if's". Frankly it is frustrating. We know that we need to have money set aside for braces, accommodative equipment for home, helmets for home and school, etc. But what happens when we take it a step further? I don't even know where to go to take that next step. When you're pregnant you read all the books. They tell you about breast feeding and diapering and what to do when they get sick. What book do you read to figure out what equipment your disabled child will need next???