Today was allergy clinic day, one of my least favorite activities in the world. Not only because my son has to receive two allergy shots and he usually has a pretty substantial reaction to the serum injected (the arm that receives the tree serum usually becomes red and swollen in a 2" diameter around the injection site), but because the medical receptionists are less than friendly to my large, often loud, brood. They obviously never had to wait in an unfriendly waiting room for at least 30 minutes post-allergy shots with four children. No amount of toys, books, snacks, or admonishments can keep four children from wanting to play, laugh, and possibly even run around for that amount of time. And today was no exception.
After staking our claim to a circle of chairs and cornering the only wooden beads toy in the waiting room, we began to wait out our 30 minutes post-injections. The kids scored about 10 stickers from various receptionists (they have learned to bypass the Allergy counter and scope out the counters at the other end of the waiting room, hitting up the sweeter women who work at Internal Medicine and Family Practice). Clare went to the bathroom twice. The most sour-faced receptionist spoke to me once. ("I just wanted to let you know that the doors open out, so I don't want your children playing in front of them in case they get hit." Which they weren't, and which we know since we've been in the clinic about a thousand times.) I had to bring Clare back to our area twice after she stared down two adults (both texting on their phones, which fascinates her).
After bringing Clare back the second time, we saw them walk in. Another mom with her four kids in tow - two girls, two boys. And I knew instantly that there was something "up" with her youngest daughter. (No, I am not politically correct.) They sat in the next group of chairs. This mom's three oldest (all probably older than my kids) sat dutifully on their chairs while waiting for their appointment to be called. But the little girl made a beeline for us. Specifically for me and Violet, who was clutching one of her baby dolls. She was fascinated with Violet's baby doll. I helped her and Violet work out an arrangement over who got to hold the baby doll when. That's when I realized that Clare was standing in front of the other mom, giving her that big wide-eyed stare. I called Clare back, and the other mom came over, too. I simply stated, "Clare has Williams syndrome." Now I am not one to make those pronouncements to random strangers. I have never felt the need to broadcast that information. Even when I know people are wondering what's up with my child or ask questions, I rarely bring it up. It's not that I am embarrassed or I feel like we have something to hide. I just don't feel like it's relevant or makes a difference sometimes. Clare is who she is. But with this mom, I sensed a kindred spirit instantly. And I was right. Her reply was, "Bridgette has Noonan syndrome."
You see these other kids and their families sometimes. On the playground. At the mall. In the grocery store. And I always wonder. I wonder what syndrome has affected their family. I wonder what their journey has been like to get to where they are. I wonder if they sometimes feel all alone in this world. I wonder if they look at my child and wonder the same things about us. I am glad I said something today because it gave me the chance to talk with another parent. To exchange some details about our daughters' syndromes (Noonan syndrome is also characterized by pulmonary stenosis) and even gain some new insight into other forms of therapy (she told me about pet therapy). Just to have the reassurance that we are not alone in this journey, and there are others out there who understand.