The first time Tera was “spotted” she was about five months old. We were at the Lake County Fair with friends and taking a break from the heat when a woman approached Tom and I and asked if Tera had Down Syndrome. We were both so taken by surprise I didn’t even really know if I had heard her correctly, but I think I answered yes and as she continued on her way I realized her daughter also had DS. At the time, I didn’t know how anybody could really tell because to me, it wasn’t that obvious. I wasn’t offended (I mean, she does have it), but no one had ever approached us before and said anything about it. For months after that, I thought about how I as a parent, would feel about approaching other parents of kids with DS without knowing 100% that they had it. I wondered how anyone could feel sure enough to say something to another parent. I mean, what if they were wrong? I wondered for a long time if people could easily tell that Tera had it; I still do. But as I look back on those early pictures, the ones I thought for a long time didn’t show anything, I wonder how I didn’t see it then. I used to look at those very first pictures of her, in the hospital blankets, having just been born, and search for signs of DS. Now I look at them and think it should have been so obvious.
At the time, all I could see was our beautiful new daughter. So innocent and new, and with so many surprises. We didn’t know in those first pictures what we were about to find out, we didn’t know she had three holes in heart, or a thyroid condition, or the beginning signs of a strep infection, or that before even spending one whole night together as a family that she would be whisked away and the next time we saw her she would have an IV, oxygen, and a feeding tube in. But then she also surprised us when she pulled the feeding tube out on her own after four days and started taking a bottle. She surprised us by rolling over for the first time when she was two weeks old (even though she wasn’t supposed to be doing it because she was using the wrong muscles). She surprised us by walking earlier than we were told to expect for a child with DS. And she has surprised us so many more times with all her amazing accomplishments.
A few weekends ago we were at the mall when the parents of a woman with DS waved to and acknowledged Tera. Tom nudged me and pointed them out and and let me know that their daughter also appeared to have DS. They waved again and then came up to us and started a conversation. They started the conversation by telling us how adorable Tera is (not going to disagree there) and then introduced us to their daughter Lindsay. Lindsay is 26 and lives in a home with five other adults in Skokie. She works at a daycare, has a boyfriend, took classes at CLC and was such a pleasure to talk to. We talked to her parents about various health concerns, knew some of the same doctors, and discussed how different it was for them 26 years ago to have a child with DS as compared to now. At the time of Lindsay’s birth, they considered themselves so lucky to have had her at a time when there was so much more information and they couldn’t imagine going through that 20 years earlier. Meanwhile we were thinking about how lucky we are that there is so much more information and so many more resources and opportunities for individuals with DS than there were over 20 years ago when Lindsay was born.
Lindsay is a very independent young woman and seems to have a truly amazing relationship with her parents. It was very obvious how much love existed between them and while her parents openly admitted how difficult parts of their lives had been at times, you could see how truly lucky they felt to be Lindsay’s parents.
I don’t need to be reassured that Tera will grow up to be amazing. I have no doubt that she will continue to overcome and achieve. I know how lucky we are as a family to have the resources available to us that we do. I look at pictures of Tera from a year or two ago and think, “she was so much easier back then”. But I know that’s not what I was thinking at the time. I know that for all of our struggles right now, there will be a time (I’m really quite sure about this) when I’ll look back on today and think, “it wasn’t that bad”. And while I don’t know that there will ever be a time when I think things are easy, I’m trying to be confident that they will at least be a little easier.
So to Lindsay, you more than likely won’t read this, but thank you for being such an enjoyable person to talk to. Your parents readily admitted your stubborn streak is still quite present so I know you are more than capable of still making your mom and dad a little crazy sometimes, but your smile made my day.