One of the things that our genetics doctor told us months ago, was to enjoy Alexis now. Because right now we can enjoy her just being a baby. Right now there are no other big medical concerns, no behavior issues. I clarified to him that there would be none of those concerns in the future either. I wouldn't allow it.
And I can usually block all of those future concerns out and just enjoy her precious babyness. She's so darn cute! And so happy. Her brothers adore her. Her parents think she's perfect. And she is. Extra chromosome or not. She's darn perfect.
But there are those moments when my mind wanders and I wonder what the future holds for her. I don't think much about medical issues or behaviors, but more about her adulthood: where will she live? Will she go to college or work? Will she always need some sort of adult supervision? I try to block it out, but sometimes I wonder.
But then I was talking to my aunt tonight. She is so excited to see her son who comes into town for the holidays. She hasn't seen him for a year. My brother-in-law will also be coming into town next week. We usually get to see him twice a year. Ugh. I realize my boys are only 4 and 6 right now, but the thought of seeing them only once or twice a year is unbearable! I already dread empty next syndrome. Might have to start working on them now to stay home and attend IUPUI. Maybe we can build an apartment over the garage...
So if Alexis lives at home for the rest of her life, I think I'll be okay with that. I don't want to send any of my kids out into that big, bad world. More and more people with Down Syndrome are living in independent environments, and maybe Alexis will too. It's a long way off and it's not something I need to worry about right now. But I also think that once she graduates from high school, maybe I'll just ground her to her room. For eternity.