Here are some of the things it does mean. It means we have a life full of therapists and specialists. While it’s nice to know we have a whole dream team of people looking out for her, it can be very overwhelming much of the time. It means we have playgroups so we can network with other parents and try to figure out which doctors we should be seeing and how we adequately plan for an uncertain future (uncertain in terms of how she’ll develop and how independent she’ll be). It means we have become part of a community we never thought we would be and have met some truly extraordinary people who have been a lifeline for us through this journey.
Here are some of the things it does not mean. It does not mean our lives have to completely change. It does not mean our whole world has to revolve around her extra chromosome. It does not mean I introduce her as Tera who has Down Syndrome. It does not mean she won’t live a fulfilling and rewarding life full of love and laughter. It does not mean other people have to walk on eggshells when talking about her. And despite all the positives, it does mean that everyday I don’t wish she didn’t have it.
I have been told on a few occasions lately that Tom and I seem to be very laid back first time parents. And I think to myself, I don’t know how much more I could handle if I worried about everything all the time. I don’t know that I had a vision in mind of what I would be like as a parent, but I guess I’ve surprised even myself with how laid back I’ve been and I know a part of it has been having to deal with all the issues associated with her DS. At some point, I developed a calmness about some things as a method of coping with the situation and I think it’s been advantageous to all three of us. Tera has been a totally relaxed, easy going kid and I’m not going to claim it’s all because of us, but I think part of it has to be that we’re not going nuts every time she sneezes or licks the floor (kind of gross yes, but what can you do?) And Tom and I have been able to maintain a sanity between us because we know that if she’s sick, we’ll deal with it and we have each other to be the support and stability she needs more than anything. So I guess what I’m saying is apparently yes I’m a laid back first time parent to a kid with DS, but I don’t really have anything to compare it to so this is what we do. I kind of look at it as, we haven’t hit her head on a doorway yet, she hasn’t rolled off the bed yet, she hasn’t broken any limbs yet, and she still has all her parts so according to what I’ve heard from lots of other parents, we’re doing ok.