Today, Samuel and I went down to the Sanger Clinic to check in with our pediatric cardiologist. Sam is roughly 5 months post-op from his first surgery, and this is the second follow-up visit we've had. Normally, we could be done for a while and move on to just yearly check ups. However, while Samuel's valve repair seems to have gone beautifully and there is no discernible murmur, this ongoing battle he has with congestion is something they want to keep a close eye on. So, we'll head back in a few months to see if it was just cold and flu season bringing him down or if there is a bigger issue at work. We'll check in on his pacemaker at the end of the month to see what it's been up to the last few months, as well.
After our appointment, I sat in the waiting room trying to get Sam to finish a bottle before we got in the car. I knew he would fall asleep approximately 15 seconds after the car started moving and I was hoping for more than just a car nap. As I tried to get him to focus on eating, the chairs around us filled up with other patients waiting to be called. Since getting to the large Sanger Clinic down at the children's hospital involves a lot of traffic and dealing with the parking garage, we usually go to a satellite clinic that Sanger Pediatric sets up one day a week in a nearby town. They take over two rooms of a larger clinic that houses a variety of different doctors. Surrounding us in the waiting room were a mother and a her young daughter, an older couple with shaky arthritic hands and cardigans, and a middle age man. Quite the mixed crowd, and all staring at my baby.
As I sat there, wiping up his little dribbles and trying to keep him from bending over backwards so that he could check out everyone around him, I became really aware of how people were looking at him. We've rarely ventured out into places where the people surrounding us don't already know that Samuel has Down Syndrome. At church and doctor's offices, most of the time, we are with people who know. At Target or the grocery store, he's usually still strapped into his carseat and I'm so busying trying to keep Luke from catapulting from the cart that I rarely notice how people react to Sam.
He was extra noticeable today as he was about half an hour past due for his breathing treatment and he was extra wheezy. So, for the most part, I took their looks of concern at face value. "That poor baby. He can barely breath. Why does that crazy mother have him sitting next to me? Why is he in public?! I don't want to catch the bird flu!"
(Wait. Bird flu is kind of over, isn't it? Swine flu? H1N1? What's the latest rage in infectious diseases? I'm so out of the loop.)
I tried to smile and pat him vigorously on the back to show that I knew he was congested and that he was fine. I made him smile and laugh while I tucked him into his carseat to show that he wasn't this sickly baby who needed to be quarantined. I muttered under my breath about how I know it's time for your breathing treatment, sweetheart...we are almost home.
You talk to your kids for the benefit of strangers all the time, too, right? It's not just me.
But as I pulled out of the parking lot, and Sam's eyes got sleepy in the backseat, I wondered to myself, "What if they were looking at him because he has Down Syndrome? What if they knew? Was that why they were watching him so intently?"
When I look at Sam, I can see Down Syndrome all over his face. When he was born, that wasn't the case. All I saw was a sleepy, c-section perfect face. But the minute the doctor suggested it might be a possibility, I found myself studying his face, looking for traces of different. I still do it on some level. It's almost like if I can prove to myself that he doesn't look like he has Down Syndrome, then miraculously that extra chromosome will just disappear. People said to me all the time after he was born how they couldn't tell. Even the nurses who watched over him in the CVICU after his heart surgeries would say that without the diagnosis on the chart, they would have never known.
After a while, it was my least favorite thing to hear. It would make me so (internally) angry. Stop telling me that he doesn't look like he has it. He does. That's it. It doesn't matter if he looks like it or not, it's there and it's not going away. It wasn't helpful then, and it's not helpful now...but at least it doesn't make me (very) mad anymore.
Sam's world is small right now. He's very well insulated from people who are callus about his diagnosis and even if that were not the case, he wouldn't care. That's the joy of being an infant. And even I have only encountered one individual whose comments about Down Syndrome made me want to hit them over the head and shove them out of my house. I know this will not always be the case for Sam or for me. It is one of the reasons why I decided to write about WDSD, though. There is so much I didn't know about Down Syndrome 7 months ago. 5 months ago. 2 months ago. I've been learning so much and I just want you to know, too.
But more than anything, I just want you to love my son. My sons. Isn't that what we all want?
Check out NDSS or DSI for more information about World Down Syndrome Day, March 21st. Just one week left!