To most people, that wouldn’t be a big issue. They would think that yes, kids grow and they aren’t small forever. But it’s a big deal of sorts when your kids are disabled. When Dear Son was small, I remembered one visit to the neurologist in particular. I don’t remember the office visit per se, only my reaction to what I perceived his life would be. I doubt it was anything that he really said but more of the realization that Dear Son’s issues were more severe than I anticipated and I wondered if I could really handle that. No one prepares you for a child that is severely disabled and at that time, I wasn’t sure that I was the best mother for a child like that. That didn’t mean that I wasn’t a good mother but rather, I didn’t think that I had any experience to prepare me to be a good mother to a child like that. That day, I went up to my bedroom alone and cried. I worried about what I would do. After a few minutes, I came downstairs and picked up Dear Son. I held him close to my heart and kissed his head and his soft brown hair. When I held him, I knew that I loved him so much and that anything anyone would tell me would not matter when I held him because I loved him and that those two feelings could not exist at the same time. My love for him would override that feeling of inadequacy about caring for a severely disabled child.
In the next few years, when things came up, I learned that it was better to not look too far ahead, where Dear Son was concerned. I had no idea of what life might look like with him and of course would not know how to handle it. I ended up dealing with life one day at a time and with blinders on, never looking too far in any one direction. It was easier to take care of him and not know what I was missing in terms of him having a normal life, and me too, and just concentrate on doing what I needed to do. It was a coping mechanism for me and perhaps for other Moms like me.
But that night in the ER it hit me. It was the realization that Dear Son was not always going to be a disabled child and that someday he would be a disabled adult. That was an important distinction. Disabled kids are cute, they can’t help themselves. You want and need to help them. But disabled adults, not so much. At least that is what I felt back then. I think it's harder for parents of special needs children because our brains still think of them as children since we do so many of those childhood or toddler tasks, from feeding them their dinner by hand, to changing their diapers, dressing them, etc. and then all of sudden you see them getting bigger or you see things getting harder, like lifting them, and your brain can no longer ignore those signs. Parents of normal children don't face those issues because they make changes all along. For us, our children change more slowly, if at all, which makes it harder.
As I faced the reality of him becoming a disabled adult, I wondered how would I reconcile this in my head? The issue of course wasn’t really whether the kids were cute or not, the real issue was whether or not I could handle him as a disabled adult. It was back to square one just like when he was a baby. How would I do things like give him a bath? How would I move him around when I can’t lift him anymore? What happens to him if I die? All normal questions.
Of course, I know all of those answers now. I learned that as Dear Son grew nothing really changed. If anything it got easier. Moving him from point A to point B could be solved with a hoyer lift. Giving him a bath is tough but Dad helps out with that. What is easier now is that I am confident and experienced. I know what to do. There aren’t medical emergencies where I don’t know what to do. It’s easier too because he has matured. Yes, I still change diapers and it’s harder to change them on a grown man but when I tell him I will change him in a minute as soon as I put my contact lenses in, he will wait. He understands when I talk to him. He is happy. He enjoys school. Overall, I feel like he turned out really great and I couldn’t be happier. In the end, you realize that there isn’t any difference in how you feel about them now that they are a disabled adult. You still love them, you still want the best for them and deep down, nothing has changed.
So why am I writing all of this? Because I got an e-mail from a dear friend of mine. We’ve never met in person but we’ve been friends for many years now corresponding by e-mail and occasionally by phone. Her daughter is severely disabled and is now growing up. She can no longer lift her up the stairs and in a year or so, neither would her husband. That fact, prompted discussions of the type of changes to make to her beautiful home, none of which would be beautiful. The real issue wasn’t the fact that changes needed to be made, but that her daughter was now in high school, soon to be a grown woman. The lifting, well, that opened the door that she’d be a disabled adult and all that went with it, meaning: who will care for her when they die, how will they do things now that she is larger and what changes do they need to make to their home now, none of which seemed very pretty. But through the tears, she remembered something I said, that Dear Son growing up, was easier. And she asked how I dealt with that, and how I do it now that he is full grown.
I wrote back and told her all of the wonderful things that there are about kids growing up and about Dear Son now that he is an adult man. I told her that in the end, nothing had really changed. After that, I gave her feedback on the changes she was considering for her house and then designed a new bedroom for her daughter; I sent her pictures of some possibilities and told her what types of things she might want to think about in terms of accessibility in the room but most of all, I made the room beautiful. She wrote back and was amazed at the changes. She said that I gave her hope and that she was finally feeling a little better that things were going to be all right. And some days, that is all we need. Some days, hope is good.