I struggle at times with thoughts of Asher's future, this is no secret. I try my best to live in the present, but worrisome visions are always lurking. Sometimes it's not so hard to push the thoughts to the back of my mind temporarily, but then there's those times when the future slaps me in the face and I can't stop thinking about it.
Take for instance when his neurologist made grand statements about all the things Asher "obviously won't be able to do". That one set me back, let me tell you. And just when I was coming around from the blow of that appointment, I was hit again when we had Asher measured for an adaptive stroller last week.
Those of you outside of my CP/special needs circle are probably wondering what an adaptive stroller is. Well, it's basically a pediatric wheelchair, somewhat successfully designed to look like a stroller (ours will be the same base but different seat from the one shown here). It will allow us to push Asher around outside (although we won't use it much until Nolan is walking and we can retire the double stroller), but - more importantly to us - can also be transferred to a different base at home. Essentially, it allows Asher to have supported seating not only outside, but at home when he is engaged in the two main activities of a two year old - eating and playing. The chair is a great thing for Asher. It will hopefully make his life easier and allow him to use his arms better without the worry of having to control his trunk too. We are also incredibly blessed that we have funding for it - it would run us around $7000 so needless to say he wouldn't be getting it otherwise. BUT (and there's always a but) it's initially a hard thing for us to accept that our child actually needs this, no matter how helpful it is.
Harder to swallow than the chair fitting itself, however, was when the conversation turned to wheelchairs and ramps and a wheelchair adapted van (down the road). No one was trying to be negative or assume Asher won't walk, but these people don't know Asher well, so from their perspective they were being realistic. Jordan and I are not naive or in denial, but he is only two after all, so we try to hold onto a little hope, no matter what the reality may actually be. This conversation made my mind swirl and that's when the future came crashing into the present and I haven't been able to successfully separate the two since.
So I haven't been in a great place. And what do you need most when you're already down? To be kicked of course! And that's what happened when I saw an article about how studies show that physically and mentally disabled kids generally don't have friends. Within a few lines I was sobbing and stopped reading because the thought of it all was too much to take. "That will not be my kid" I thought. What if it is?
But then, just when I needed it, I was given some sort of sign. That same afternoon when I went to pick up Rio from school, one of the older classes was outside playing. This class happened to include a little girl who has a motorized wheelchair (one of the reasons we love Rio's school so much is that it is inclusive and accessible). I have always seen her around the playground but not noticed her friend situation. Given the article and the horrible stats I had been made aware of, I took a good hard look.
Surely not surprising, when I did look it made me cry. Not for the reason you may think - but because I was relieved. Not only was this little girl playing with three friends, but her wheelchair was a key part of their play. "Did I hear someone call for a taxi?" she happily exclaimed as she sailed past me to pick up a friend and cruise them across the playground. She had no idea of how she had just made my day and helped my heavy thoughts disappear for the moment.
So just when the future looks grim and statistics tell me horrible things, I am given a reminder that things will not be as hard as my crazy, imaginative brain keeps telling me. We will adapt. This future of ours might include more equipment for Asher than we'd planned, but I think it'll also include just as many friends as we'd hoped for.