This post is about the depressing reality of our lives. We are parents of two children, one typical adult and one adult diagnosed with autism. This post has been rolling around in my brain for a while, and just about every day either a conversation I've had with a friend, an article I've read, or an experience I've had, adds to what I would want to share in this post. Before it becomes a novel I have decided to get this down in writing.
It all started a while ago, when I saw an autism mom's video. She talked about a lot of things, but what has haunted me was when she talked about her worry about who will be at her son's funeral. I do not believe she meant to be morbid, nor do I, as I am writing about this. It's just one of those awful facts of life that if the circle of life goes as normally expected, we will be dead before our girls.
It so happens that my girls have no first cousins. We are also a family quite spread out across the country, so we don't see extended family often. In the case of my "typical child" this is not such a big deal. She can keep up on social media, if necessary she can pick up the phone (gasp) and at family functions she can chat and catch up with everyone. She has an understanding of the concept of family. Not so in the case of our RJC. Though we have been blessed with a family who is concerned about her and loves her, she is not necessarily as familiar with them. Those who are closest to me are in my general age bracket and therefore the chances of them being around longer than her...well...it's the same circle of life issue.
So other than her sister and hopefully whatever family her sister has, who will be at her funeral? Will there by anyone except perhaps her sister, the Rabbi, and any people he can gather up to be there - possibly strangers. Not only that, but will anyone be around to miss her, other than her sister? Who will she be important enough to that they will take time out of their day to be with her when she dies and when she is buried. Talk about incredibly depressing.
I then think of her aging process. I'm in my mid-fifties and I've started to have my share of health annoyances and scares. She cannot possibly understand how to truly take care of herself and monitor her body's changes. At this point, even I am often guessing how she feels. It's one of my major autism hates - the fact that I really do not know with complete certainty if she is feeling ok. Nevertheless, I am absolutely on top of that. I check in at various times to see that she has no new scrapes or marks, doesn't seem to have a fever, isn't congested, etc. When she is older and I'm not around, what will happen if she has aches and pains but no way to share that information with her caretaker? Or what if her doctor does not think her life is worth fighting for? Or if the medical insurance company does not think her life is worth fighting for? And if there is some type of treatment she needs to go through, who will be there with her? How will she handle the discomfort/pain of a treatment without understanding that it's supposed to help her?
Then comes the pain of knowing that once I'm gone she will not have any understanding of where I am. Will she think I just left her? Will she worry that she did something wrong so I left? Will she wonder if I'm coming back? The concept of "death" is just not one I can explain. She will sometimes ask for her Grandma or her Uncle and I say, "Where are they?" and she will reply "Dead." But it has no meaning, obviously, since she still asks where they are. She probably assumes "Dead" is a state like "Florida" or "Texas."
All of this is incredibly heartbreaking to me. Then on top of this is the worry about finances. She is not going to make a living that will support her. Ever. This means that she will not receive health insurance through a job. Once we die (or stop working) then all of her health insurance will need to be from the government. So she becomes one of "those people" who are "living off the state." Well yes. What does that mean? That I shouldn't have had this beautiful soul because once I'm gone she becomes a "burden" to those who cannot fathom her value? Should we have had another child or two so that they could help her sister take care of her? Not like we didn't think about that - but we also realized we could have another child and that child would need care as well. It was not a risk we were willing to take. Maybe we made the wrong decision. But maybe not.
So when I try to sleep at night, this is the sort of thing that goes through my head. Over and over. I read articles about the federal and state budget and that does nothing for my sleep. I try to calm myself and remind myself that there is no sense in worrying about these things. Time will tell. None of that helps.
There are no answers of course. I do not know what will happen in the future. Nobody does. So there's just getting through the day, trying to put pieces in place for her, and praying. Feel free to join in.
