Saturday, March 27, 2010
A Balancing Act
I have a situation that is kind of bothering me, and I need to get it all out on "paper" to help me sort out my feelings.
I work in a small office. There are only 6 of us. I've worked here for 10 years, go to church with some of my co-workers, and consider others very good friends. We found out about Claire's heart defect when I was 29 weeks pregnant, and thus the 50/50 odds of her having DS. I told everyone what was going on. I also emailed extended family, and friends that didn't live close by. Part of my reason for doing this was because I wanted to give everyone, me included, time to adjust. I didn't want to hear "I'm sorry" if the diagnosis was confirmed. I didn't want anyone feeling sorry for us.
Fast forward to Claire's arrival...and the confirmation that she has DS. I emailed friends and family to tell them the wonderful news. That Claire was here, perfect and beautiful, and sporting an extra chromosome. The outpouring of love and prayers was immediate. I never heard "I'm sorry", and I hope nobody thought it.
I am Claire's voice right now. I am constantly reading and researching, trying to keep up with therapy, and make sure she has every advantage we can give her. I feel like I am constantly thinking about Down syndrome, not always in a worried way, more like I just need to be prepared. I'll read something interesting in an article or blog, and will often find myself saying "babies with Down syndrome....". DS is always in my thoughts.
What has me bothered, is that except for one friend, I don't know that Darren has ever said "my daughter has Down syndrome". Nobody he works with knows. They knew there was a possibility. They know we had lots of doctor appointments, and the know about her heart defect. But they don't know she has DS. Claire has been by his job and met the girls in the office, but at this age they couldn't tell. I worry that people will think he's ashamed of her because he didn't mention her DS. He's not ashamed of her, not even remotely, but I worry that's what people will think.
After I get all this out, I wonder if my discomfort is jealousy. There are times when DS is all consuming for me. It's all I can think about, and it doesn't seem to be this way for Darren. I can pretty much guarantee that while Darren's at work he's not thinking about if we should be doing more therapy with her or not. I guess what this means is that I need to pray for balance. I need to do what is best for my daughter, while not letting therapy and general DS worries interfere with my time and enjoyment of just being her mommy.