As a blogger and a mother of a special needs child, it should come to no surprise that I spend my leisure time reading other special-needs-parenting blogs. One of my favorites is Love That Max. It's a blog written by a mother of a son with Cerebral Palsy. She writes everyday, and I read everyday. It's a good relationship. Since her son is about twelve, she's obviously been through the special needs scene a lot longer than I have and she's constantly bringing up thought provoking topics that make me think, "YASS!", and "OMG SO TRUE!" and she also brings up things that I didn't even know were things, but that I now care deeply about.
A couple days ago she wrote about the mishap that happened at the Oscars (I'm so out of mainstream media that I didn't even know there was a mistake in the ceremony until I'd read her blog). She went on to talk about how after the Oscars, all the news would report on was that one mistake, and there wasn't much talk about the actors and actresses that had won awards, and their hard work, and congratulations.
She then paralleled the conversation to special needs children, and how when the world sees them, they're quick to point out what that child can't do, instead of what they can. Most of you reading this blog know that Em can do quite a bit, and I hope over the last few years I maybe have done a good job normalizing special needs parenting, and have taken the scary out of it for just a few people.
One thing that has been on my mind lately is how fixated people are with the fact that Em can't walk. It's not even from strangers, but from people that I personally know whether it be friends, family, people from church... family.. I know that everyone means well, but a big pressing question that we get all the time is, "Well when should she start walking?" For now we tell everyone, "Hopefully Christmastime!" Because it's the easy answer, but she was also supposed to be sitting unsupported in October of 2015 and that milestone wasn't checked off until last week, so it's up in the air.
One comment that I got a week or so ago was, "So are they doing anything in therapy to get her using her legs, and to get her moving?" I was honestly shocked that a question like that could come out of someone I'm related to, who should have a pretty big idea as to what's going on in our lives. I wanted to respond with, "What do you think we've been doing for the last 18 months?!", but instead I went with. "Well, we've decided that her legs are actually pretty useless at this point, so we're in the process of meeting with doctors to get them amputated." I could have been nicer, and the person obviously knew I was joking, but were still serious in their question. So I had to remind them of the leg braces, the standing at the couch and playing with toys, the gait trainer... all these things that we are doing to get her legs "going"... it's a long process.
But my main point to this post is that walking isn't everything. I'm far more concerned as a parent with what my daughter can and cannot do mentally, then what she can and cannot do physically. I'm concerned if she can tell me whether or not she's hungry, or if she feels pain, or if she's thirsty, or needs help. And for the most part, she can tell me all those things. I'm concerned if she can eat her food, and swallow, without choking. And she's been successfully doing that for months and months now. I'm concerned if she knows that her family and I love her, which I think she surely does by the way she slurs the words "love-ew-too" together. And I know there are people with special needs children who are reading this and are saying. "they have it so easy", because I know comparatively, we have a cake walk if you put Em up to someone else. She's doing far better than we ever thought she would. She's spunky, smart, sassy, cute, rebellious, and most importantly, loved. And if she's five before she ever walks, so be it, because what we have will always be better than walking.