A friend asked me once to define what was so different about Mya. I was probably in one of my stages of grief over her diagnosis and my friend was probably trying to remind me that she is more alike other children than she is different; a child with a disability, rather than a disabled child. I remember thinking ONLY EVERYTHING but being unable to put it into words.
Halloween sort of sums it up. Don't get me wrong, I love Halloween. I love the costumes and the excitement and the candy I get to steal from my kids bags while they nap. But with Mya, Halloween is different. And no matter how focused we are on inclusion or on seeing her as a child first it will always be different for her. She cannot pick her costume or spend the month before in anticipation with every adult that she encounters asking her what she will be. And so we pick for her and use her same age siblings as guides to the latest age appropriate character. This year we went with a princess because that is Ella's latest obsession. We dress her wheelchair to give her something a little extra special to show off for the day. We take her trick-or-treating even though she can't eat most of the candy out there. We grab suckers when we can because those she loves. She can't get to the porches and so she is left in the shadows of the porch lights, her chair half-tied up in overgrown bushes or stuck on sinking sidewalk cracks. Most of the people don't know her and so they hand candy to Ella and Clayton and send us a wave. They might notice her back in the shadows but 75% of the time they assume she is a baby and so unless we suggest at each door that her siblings grab something for her she will usually be left out. And then we smile and nod at the 'oh, the baby is wearing a costume!' comments as we back our way back down the path trying not to trample landscaping or knock over solar lighting and move on to the next house. I am not willing to let Halloween be the day I educate well meaning strangers as they hand my kids free candy. And so when we go home to warm up and find bigger candy buckets because Ella and Clayton's are too full Mya doesn't make the trip back out. And it is fine. It was too cold for her last night anyway, no way for her to move to keep warm. She got to go out in her costume and she looked fabulous. We told her so as did those who know her and we got pictures.
As for the rest of it, it is fine. Sort of like how it is fine that she slept straight through our dining room table fort party this morning even though it stretched into the afternoon or how it is fine that after she did finally wake up she stayed inside on my lap struggling to get her breathing under control while Ella and Clayton squealed their way around the back yard playing soccer with dad. She will not have the same childhood experiences as the typical child, as much as we try. As parents our experience will be different as well. And that is fine. She will have experiences all her own. We assume she doesn't know that she is missing anything. We assume she can't understand or be bothered by the baby references. We also assume she enjoyed Halloween and her suckers all the same.
No comments:
Post a Comment