I don't like looking too far into the future because it usually scares me. I can see a few months ahead, maybe even a year, but beyond that, I start thinking about Miles and what he might or might not be doing. I get scared when I think about the challenges we'll face once he's in elementary school, middle school and high school. I remember how hard it was just to be a typical kid in school, I can't imagine what it's going to be like for Miles. And for me. How am I going to feel letting him go off into a world who doesn't love him as much as I do? I know I'll be happily surprised at times, there are some beautiful people out there. But the mean people can really scar us.
And what about after high school? Most people joke about how great it will be when their kids leave the house and go off to college. Or get a job and move out on their own. I want to envision those things for Miles and it is possible that he can achieve them. But I also have to think of the alternative; that he will be with us for the rest of his live. Honestly, for me it doesn't seem like a terrible thing to have my happy, loving son with me all the time. But what about for him? Will he want to live on his own and get married and do all those things other people get to do? Will he feel cheated in life? I hope not. But I don't know.
And what about later on? What happens when we get old? Who will take care of Miles if we can't? What if he gets early onset Alzheimer's and needs constant attention? You might not know this, but the incidence of Alzheimer's on people with Down syndrome is 3 to 5 times higher than that of the general population. And because people with Ds also exhibit signs of premature aging, they can start showing signs for Alzheimer's anywhere after 35 years of age. I saw my grandfather go through Alzheimer's and it's a slow and difficult disease.....the last thing I want to see my son go through!
Look, I get it, we all worry about our children, regardless of who they are. Maybe my worries are just a little different than most. I'm not worried about him becoming a drug addict or anorexic or a serial killer. I'm worried about him not having a full life. I'm worried about him being unhappy or excluded. I'm worried about his health. And I'm worried about how I'm going to deal with all these challenges emotionally. I'm worried about all the pain I will go through if I see my child suffering. Nobody wants to see their child suffer. So why think about the future and all the "what ifs"? Live in the present as much as possible! That's what I try to do. In fact, that's another one of the many gifts Miles has given me.
When I was in my twenties, I used to spend so much of my time living in the future. I'd freak myself out and have panic attacks just thinking about life after college. I wanted to tattoo my wrist with the words: Live Here Now, so I'd have that constant reminder. Somehow I got through my twenties without the tattoo. Besides yoga and meditation, I think diving into life with more courage than fear is what really helped! And every time I forget, Miles reminds to live in the moment. That's his M.O. and I love it!