My husband turns 50 tomorrow, and next month we will have been married 20 years. It's making me think about the future. At this point in life, a lot of couples might be getting ready for the next phase of life---an empty nest, thinking ahead to someday retiring. Of all the things that having child with significant special needs changes, I think perhaps the most profound is the view of the future. There is no future I can picture without a child in it. Janey won't be a child physically or chronologically, but it's very likely she will be a child mentally forever, and we will be responsible for her as we would be for a child.
I was daydreaming the other day about when Tony retires, how we could take long trips around the country, and I was a little startled to realize Janey was in those daydreams as a natural part, and it wasn't a negative part. I pictured her joy at trying hotel pools, or listening to music in the car, or seeing new places. I edited out her screaming for hours, or making it so Tony and I were never alone, or that kind of thing, but daydreams are always edited a bit. I was happy that my mind could glimpse a good future with Janey in it.
But of course, that's not always the case. I think about things like group homes. I am sure there are wonderful group homes, but I am terrified at the thought. I am scared to death of Janey being abused, or yelled at, or not taken care of well. I've heard that every parents needs to let go at a point, but I can't see letting go of her. I can see it with the boys, because they can take care of themselves, and let us know if something's wrong, but I can't see it with Janey. I try to tell myself---I never worry about those scary things when she's at school. Truly, never. That's a matter of trust and love---I trust the school, and I know the people there love Janey. Maybe I would find a group home like that. But I know how lucky, how lottery-winning lucky, I am that she's in the school she is. I don't know if I'd get that lucky again.
And so, for now, my future will always have Janey at home. And that is usually something I can picture without panic. When you have children, there are no guarantees. No-one ever says "Take good care of them for 18 years, and then you'll get a break". You are playing the lottery with kids just like with so much else. And for the most part, we've been very lucky. There are so many things worse, unspeakably worse, than having a child who will probably never leave home. And heck---she's only 7. I can put the whole thing out of my head for a lot longer, which is something I've gotten fairly good at. So for now, we'll just celebrate the milestones as they hit.