My little man is now 21 months, today we went for a wheel chair fitting.. Bitter sweet. I know he needs better support than a stroller, he always scoots his butt down then his lower back doesn't touch the stroller, its just not good for his scoliosis. So I was thinking that it would look more like a stroller than a wheelchair. I was wrong. Don't know why its bothering me, but I just feel like when he gets the wheel chair and use it in public its gonna scream "look at me" and then people will wonder why is this little guy in a wheel chair.. I don't know maybe its a reality check that my son has delays and dare I say disabled or handicap. Its just really hitting home that he's not going to out grow this, like so many well meaning people have said to me since he was an infant. I got a comment the last week from a women in a store, she was talking to Gabriel and said " wow look at those thighs, he should be pushing the stroller not in it!" so it sorta pissed me off, don't know why and I said "he cant walk he has a muscle disease" lol for some reason it made me feel better like I was sticking up for my lil man! But then the lady kept on and was saying that she would pray for him.. I know she didn't know anything was wrong with him by him just sitting in the stroller, but the comments are bothering me. If im walking and holding Gabriel, if someone doesn't see his face that hes awake they say, "awww out like a light" or "how cute hes sleeping, or so relaxed" then they realize hes awake and they just look at me weird.. While I'm on a roll, It also really bothers me when people put their 2cents, 3cents, 4cents... in, like asking me all kinds of questions like did you have this test, or this therapy, or blah blah blah..
Guess I'm venting a bit, its been a stressful past month.. But Gabriel is doing good (knock on wood), hes a happy chubby little guy and just an absolute joy. I thank god that although he has poor muscle tone, he doesn't seem to have any other issues, like with his organs and such. Feeding is also getting better, hes more willing to try new foods, though he doesn't eat much of it, he is trying, so for this I'm very happy!
BTW the wheel chair will take about 4-8wks to get, maybe I will be more prepared for it by the time it arrives..
Hello
ReplyDeleteI think it is cool that he gets now a wheelchair, as he is already a big boy.
I have CP I am disabled from Birth and I walked for 33 years. I still can walk a bit, but only short distances and it gets me nowhere fast. So I had to get myself a wheelchair about 3 years ago, and for me it is the best thing i did, because my wheelchair is the best painkiller.
Before people had to wait for me, now I wait for them :)
I am sure that his new wheelchair will look absolutely amazing :)) Please put a photo up when you receive it.
The wheelchair should stop the stupid comments you get from people. Because the wheelchair states "I am physically disabled" so stupid comments should belong to the past.
If you like the buggy better, there is an Italian Company that produces one of the most brilliant "normal" looking buggies for disabled children.
http://www.ormesa.com/en/
Go to the seating system Bug and have a look, there are 3 bases one for inside 2 others for outside. The system can grow with the Child :)
Let me know what you think. I look forward to hear from you.
Kathrin