About a month ago, a friend of a friend shared a link with me for a show called "The Specials." It's a documentary of a group of special needs adults living together and it provides insight in to their day to day lives. While I was put-off by the title of the show, I watched a couple episodes. That was about all I could do. There is something about seeing an adult with Down syndrome that is hard for me to stomach and it's probably because Rachel will be one someday. The future is very hard for me to look at in the face. I tend to keep my eyes low and only focus on the here and now of our daughter's life.
When you learn your child isn't "perfect", you automatically jump into the future head first. You all of a sudden think about the things your child won't do. Things they won't experience. As time goes on though, and you settle into loving that little being in your arms, the future doesn't look so scary. You are lost in the moment and I think most of the time, you stay in the moment. Families of children with special needs have a lot to keep them in the present moment too - doctors appointments, therapy appointments, and medical procedures overtake a big chunk of your life. Again, you don't find it overwhelming, it's just how your life is and you live it. But every once in a while you look up and there is the future and it's scary. How will I deal when I get there? How will I handle X, Y and Z??
I had a conversation with my friend two days ago. Her son has Down syndrome, too. She went to the Down syndrome conference in Florida last year. She told me how there was a big dance and she saw adults and children with Down syndrome dancing without a care in the world. My friend said she spent half the time laughing and the other half crying. Even after four years of welcoming her son into this world and loving him, the future is still hard for her to look at.
I guess what I'm trying to say is this...I love my Rachel and I would never change who she is. I would never wish she wasn't born. But sometimes, it's hard to believe this is my life. It's hard to believe that my girl is different and that those differences will only become more apparent as she gets older. It's hard to imagine her as an adult of 21 but acting like she is only 12. It's very hard knowing many people will reject her and think less of her because of her disability. I think a lot of special needs parents feel this way too which is why we don't look at the future too much. It's too painful and it's easier to deal with when we actually get there.