One possible future

I really can’t imagine the future of our family. It has made it very difficult to plan and to take steps forward like a normal family might. Next house, going back to work, more kids, a pet? Honestly sometimes I feel like I’m waiting for the worst to happen, holding my breath until the end. The end of what I don’t know exactly, the end of Lydia’s life maybe? No, that isn’t it. I can totally imagine being with her into my old age, having her companionship and sweetness is not a burden. I love and enjoy her. But I catch myself waiting for this all to be over, this…misadventure that has become our everyday existence. No, what I am waiting for is the end of our bad f@#cking luck. I just want to hit rock bottom already so we can stop bracing ourselves for the impact. That’s what it is. I just want to stop being at the beginning of this and get through it so that I can move on with…well I don’t even know really. We just seem to keep falling through finer and finer sieves of bad luck. First it was just having a health problem at all, lots of people do. Then it was seizures, still a lot of people, then it was intractable seizures which is %30 of those people, then it was rare genetic disorder, falling into a smaller population, then it was severe developmental delay, likely never talking, reaching for stuff or doing much of anything and you hardly ever see any of those folks out in the world. Well maybe that wasn’t quite the right order but you get the picture right? I’m getting paranoid about bad luck. I’ve started seeing missing the bus as evidence of a family curse.

Lydia has scoliosis. That’s the latest voodoo on her. I got the email from her doctor today and I knew it was coming but…still feels like another blow. It is a minor thing in the larger picture of her pathology, I am telling myself. No reason to react this way, up writing a blog post at 3am. No reason to worry, we’ll manage it the best we can just like anything else. A little black cat crossing the path in front of us. Cats watching from the woods, waiting, glarings of them.

I have only one image in my head of a future to strive for. It is in sepia tone, high contrast, Gaussian blur effect on, there’s a big tree with a table under it and we are all having dinner together as the sun sets. There are candles and blackberry pie and lots of kids running around together and more than two of those kids are ours. Lydia is in her wheelchair at the table and she is a part of everything. She is central to everything. We are all together with you- my friends, my family- and we are enjoying ourselves. We are happy. We made it to the end.