Down syndrome has made my life easier. I know that sounds weird. Let me try to explain.
Before Frankie, I spent a lot of time and mental energy worrying we didn’t own a home, we didn’t make enough money, maybe I wasn’t ambitious enough etc, etc. I called it “planning” but I was preoccupied with the future so much so that I was very rarely satisfied with where we were now.
After her diagnosis I went into full research mode in order to get an idea of just what our new future was going to look like. But it was useless. There were so many variables. I thought to myself, well, she’s completely healthy so that has to mean she’ll grow up to go to school, live independently and have a great job. But, I found that wasn’t a predictor of anything – I encountered kids and adults of all levels of functionality regardless of their health status. I struggled to find other indications of what our life would be like. Finally one evening I was researching college programs for kids with special needs. “She could go here!” I excitedly told Seb. “Are you worried about where Tristan is going to go to college?” he asked reproachfully. “Well, no,” I admitted. “Then why are you making yourself crazy worrying about her?” he said.
Something clicked then. I realized I couldn’t possibly know what her life was going to look like and that that wasn’t necessarily a bad thing. Because the future was beyond our sights, I had no option but to focus on the present, to take each day as it came. As a result, I have become more content with our lives in general. We still have goals, but they are more immediate and more attainable and the future seems less daunting, smaller, quieter. I am more thankful for what we do have and have achieved instead of worrying about all we don’t have or haven’t done.
I used to think that feeling like this would be settling. A cop out. But it’s not. It’s so much better than before. This is what families of children with DS mean when they say their child changed them for the better.