Letting go.

I've been looking at houses that we might be able to move this summer. Our current place has bad mojo. I don't know how else to say it. We've had a lot of misfortune in the year and a half we have lived here, not the least of which was the break-in. Also there are more practical reasons for moving like the lay-out doesn't work, our house is kind of on a busy street, we have practically no neighbors, and we are not districted to an elementary school that either of my boys could attend.

In my search for houses (we are renters) that might work I find myself searching for something else. It took awhile for me to put my finger on what that was. I went to go drive by a house (that was for sale, but I thought maybe we could convince them to rent to us) in a neighborhood in Chapel Hill. B. and I were on our way home from therapy and we had a few minutes to kill, it was on the way. It was 2:30pm and as I drove into the neighborhood, I saw the kids who were getting out of school and walking home. Some of the big kids were walking with friends. The little kids were walking with their moms pushing the baby sibs in a stroller. That's when it hit me. And it hit me so hard and fast, I had to pull over to cry. I just want to go back. I want to rewind time and have that be me pushing the little one in the stroller and walking my big (but so little) kids to school. It was me. I did that once. Things were very simple and life was predictable and the future was certain.

It's not that I'm having trouble letting go of the past in any kind of regular way that mothers do. It's not really even the past that I can't let go of at all. It's the dream of the future. What I wanted that to look like. What I wanted right now to look like. And the more time goes by, I've come to realize that I can be okay with having my sweet precious perfect son being really very disabled. What I'm not at peace with, and I'm not sure I can ever be, is all of the other ways that my life has been affected and changed.

The husband and I have done a lot of talking lately about ways we can make positive changes for the kids and for us. How can we bring some joy back? A big part of my unhappiness is the total lack of control I have over what happens to me, B., our whole family. In our conversation, this was always the block that came up with any plans we might make to try to get our lives back. The irony is this was the exact reason why the husband had to get out of the military after he served his time. We just had no control over our lives: we had to move wherever they told us, he had to take whatever job they gave, and ultimately doing a "good job" meant nothing. He was deployed very suddenly once when E was a baby. That was that- we needed to be calling the shots for our lives. We had a vision about what kind of parents we wanted to be, and being an absent father was not in that plan. He resigned.

Unfortunately now the lack of control is inescapable. One of our ideas was to move. Watching those kids walk home from school made me think that maybe there would be a situation where I could have some of that back. Could we move near a school that both of my boys could attend? Maybe my boys could go to school together. My sons who were supposed to be best friends, born 19 months apart, maybe I could walk them to school together. Stop. I cannot make this decision, I do not control that. Nothing I can do can make this situation a reality. I could move into the house next door to the school I like and it could very well not have a class for B. Or it could have a class and the special ed department may deem it not available to B. I have no control. Every solution or every idea the husband and I came up with about how to bring some joy and some peace back went down exactly like that.

Despair: The moment when you realize you have no control over your life. When you realize that you can make the right choices but it is meaningless. When you realize your actions do not impact your future.

Hearing no.

I'm pretty sure one of the most depressing parts about parenting a child with significant disabilities is hearing the word "no" with unbelievable frequency. No, he cannot do that. No, he is not welcome here. No, your insurance doesn't cover that. There are NO available slots. That service is NOT available. I know this is a program for children with disabilities but yours has too much need. We do not have funds. Or there is the yes that is really a no: Yes, your child can be in this program and that will cost you $$$$$ which you cannot and never will be able to afford. Before B. I don't think I ever heard the word no. Pretty much I set goals, worked hard, then I achieved my goal. Autism doesn't roll like that.

I've heard the word no too much lately. Which brings complete frustration. I wish I didn't let people have so much power over my feelings like that. It's one thing to be frustrated with my child's pace and difficulties, where I can blame the disability. But when I advocate for him and fail to get him what he needs, that's all on me, that's MY failure.