Well, today was depressing. Jackson had his regular Perlman day today and they put him in an Expand-A-Seat (i.e. a wheelchair). One of his therapists suggested we start completing the paperwork for a wheelchair.
Josh and I are okay with his diagnosis. We’ve come to terms with it. What haven’t we come to terms with? The wheelchair. He doesn’t need one right now, but he will eventually (I wanted to say he’ll probably need one, but that wouldn’t be true). This is one of those life events you never expect and never plan for.
I don’t know when he’ll need it, but it may be sometime in the next year. That day will be really depressing. There’s no way to sugar-coat it.
Two main reasons this is really bothering me:
- People will know he’s different; and
- People will look at him differently.
It’s nice to take him out now. He gets out in the stroller or the pumpkin seat. He looks normal. No one can really tell he’s different. The only way people can tell is if they spend some time with him and notice he’s not on a one year old level. I acknowledge it will get more noticeable the older he gets, but I don’t like it.
If you’re reading this post, what I’d like you to take from it is please look beyond the wheelchair. There’s a person in it. Pretty soon you’ll be looking at my family. I hope you see my cute son and not the fact he’s in a wheelchair. I might be overreaching a bit (and I hope I am). I just know how I’ve perceived people up till a few months ago. My outlook has changed. When the time comes, I hope I see the wheelchair as a good thing instead of a depressing reminder of his diagnosis.
cincinnati b(liss) 
What we will see is a sweet little boy who we love. Who is fortunate to have wonderful family support, and two wonderful parents that love him. So lucky to be surrounded by so much love and attention. He will know that he is loved. Uncle Joe and Aunt Pam
Thank you for sharing your perspective Tinie. I really enjoy reading your thoughts. Love you!
I will see your son as someone who is deeply loved, not as a person in a wheelchair. Blessings…
I am reading this…and thank you. It’s an important perspective, and one I don’t think we all think of that often. Your son is so lucky to have you–and you, him.
You two are so amazing! We hope to see a special person when we see a wheelchair person. Love you. Jane & George
Oh sweet heart dont see this change as depressing. Always remember that our God dosent make mistakes. Also know that a wheelchair dosent define its rider. I work for Riley in Neuro Peds and I see somethings that have broken heart all over them and then the childs smile or speaks. There is nothing more graditying then these measure of love from just a simply gesture.Your beautiful son will not see himself as different so neither should you. People really are amazing when you give them a chance they will not judge Jackson. I am not saying all people will see him this way but you need to have the strength to be about to reasure your son that he is and will always Jackson a beautiful boy who do anything he put him mind to. Jsckson is the gift that God gave to you and for a reason. Jackson will do wonderful things in his life and they will shock you. Be strong and allow life to happen for Jackson. God Bless you and your family.