Out and Proud

About a month ago, Clara and I had gone to dinner with some of my family. It was a super hot day, and the restaurant had a lot of fans on the ceiling, so I opened Clara's carseat cover so she could get a breeze (and commune with her favorite thing on the planet, ceiling fans.) A waitress came by and saw her feeding tube, which led to a discussion of her son having been on a feeding tube when born premature. When she asked about Clara, I said she had a heart defect, had had surgery, and was now learning to eat.
After the waitress left, my mom sort of questioned why I had told her about Clara's heart, not 22q. At the time, I honestly was just trying to get the waitress to leave-our waiter had brought our food and I was too hungry to discuss chromosome abnormalities. Heart defects are easier for most people to understand.
But since that day, I have thought a lot about this insignificant little encounter, and my feelings about this journey. I've realized that you can't (at least I can't) find out that your baby has significant health problems that might impact her whole life, and then see her miraculously treated and see her grow and flourish without acknowledging that she is a gift. And if there is a gift, there is a Giver. There is no doubt in my mind that there is a Heavenly Father who gave us our Clara, and I can only take this wonder, this gift and find a way to give back in her honor.
When we first found out Clara might have 22q, we told very few people. The possibility of having a special needs child was daunting, and we weren't ready to have people ask a lot of questions, overload us with information they found on Google, or look sad and uncomfortable, not knowing what to say. And when we found out she did have 22q, and we told a few more people, that is exactly what happened. I found myself feeling defensive about what caused it, to deflect any possible blame. I got irritated when people would tell us about their friend's neighbor's sister's son who has 22q and is 11 and 'is just fine, you'd never know!' I went back and forth between wanting to tell them that it is ok to know someone is different, that makes us interesting, and wanted to shout that I didn't care about other cases, I cared about Clara and what this meant for her!
So now, with Clara stabilizing, getting stronger, and life settling down again, it is time for us to focus our efforts on helping people know and understand 22q, heart defects, and what can be done to help those in our situation. We are going to tell everyone who will listen, we are going to wear it on our sleeves. We are going to work with our geneticist to help spread awareness of 22q support groups and we hope to build a local community of 22q friends for Clara. I am wary of the word 'normal', but I know that the mildness of Clara's condition so far means she will have a lot of strength and energy to give to educate people about special needs, so its only fair that we get it started for her. I want her to be proud of who she is, what she has overcome, and the tiny missing pieces of her chromosomes that will make her experience on this planet as complete as any other, in her own special way.
Oh, and we pulled her tube the other night. This girl is going to eat, just to prove she can :)