Norah has hypertension. That’s right, my toddler has high blood pressure. Williams Syndrome is caused by a deletion of genetic material on chromosome 7. Included in the missing genetic material is a gene for elastin. Without that gene Norah’s blood vessels are rigid and small. It is one of the ways WS has affected her. How does that make our day different? Norah takes two blood pressure medications twice daily. They are compounded in a tasty syrup and she doesn’t even blink anymore. She just stops running for the two seconds it takes to squirt the syringes into her mouth and moves on. We also monitor her blood pressure at home. This is not an everyday thing, just occasionally to keep an eye on it. And she see’s a pediatric nephrologist (kidney doc) and has blood drawn every three months to monitor kidney function and electrolytes. Norah has ultrasounds of her kidneys every 6 months to assure they are both growing and to look for calcium deposits. Why look for kidney stones on a 2-year-old? Well, that’s a post for another day.
Everyone has a cause. I always feel sheepish about asking people to support my cause. And yet I have no problem soaking up your time by posting about what we’re having for dinner or (in related news) what color my kid’s poo is today.
May is Williams Syndrome Awareness month. Unless this is the very first of my posts you’ve read you know why this cause is so important to me. Our now 2-year-old daughter, Norah, was diagnosed with Williams Syndrome (WS) when she was 5 weeks old. It was one of those moments where your entire life course changes with such suddenness you find yourself whiplashed, confused, in shock. Truly, my path as a mother was redefined in that moment, even as it had just begun.
Part of my journey as a mother includes talking about Norah’s rare genetic condition. Why? Because people are going to notice that she’s different. And I believe if they know why and feel free to ask questions that she will meet with more acceptance than not.
I have been there. I have encountered people in passing who have special needs. I get nervous. Don’t know where to look, what to say. It throws me off kilter because they don’t move or communicate in ways that feel familiar and safe. I am ashamed that I need to shuffle off to avoid the discomfort. Norah is my motivation for overcoming this unattractive piece of myself.
We start asking our children to notice differences at a very young age. Remember the Sesame Street sketch, “Which one of these things is not like the others?”. On the Baby Channel it’s “What’s Different?”. But then one day in the checkout line at Target your child notices something different about a person and loudly points it out to you. And red-faced you tell your child that isn’t nice, or we don’t say that. This is an intricacy of parenting I have yet to face. And I do not look forward to it. It’s so complicated. We want our kids to be curious, notice things, ask questions. Should we shush them over the awkward ones? I don’t know the answer. Maybe we can figure it out together.
We recently had dinner with a friend and her two kids. Norah was in their playroom when some electronic toy sounded off. Norah stopped. Her hands covered her ears. And there she stood for a couple of minutes, long after the noise was quiet. This move is familiar to us. Norah does that ALL THE TIME. Hyperacusis is one of the ways that WS has affected Norah. But this reaction is not exclusive to noise related discomfort for her. If she slams her fingers in a drawer, hands on ears. If she bumps her head, hands on ears. If she is scolded, hands on ears. It is the equivalent for her of rubbing a bumped shin. It’s the lingering there that looks different, though. She needs time to process the discomfort. She needs to protect herself from further pain. And so when this happened in our friend’s playroom her little boy noticed that it was different and asked, “why is she holding her ears?”. We talked about noises bothering her and moved on. Later Stu would witness both of those children thoughtfully asking if a toy was too noisy for Norah. In fact, Stu and I were touched by how our friend’s daughter intuitively played at Norah’s pace.
I want to be more like that little girl. I want to be unafraid to step outside of my comfortable pace. I want to be like her brother. I want to be unafraid to ask questions. I want for people to notice how Norah is different and I want them to ask about it. Norah is challenged daily to move at a pace that’s uncomfortable for her. Yours. Mine. She works incredibly hard to keep up. And she does it with way more enthusiasm than resistance. I want to be more like Norah. I want to be unafraid to face big obstacles.
I’m never embarrassed by my daughter. I am crazy proud of her. The reality of raising a special needs child is that heartache comes in waves. There will certainly be times that I’m more tender than others. When I might not feel like answering those questions that I’m begging for now. That is my obstacle. I am trying to face it as bravely as my beautiful daughter faces hers. You cannot protect me from the heartache by not asking.
This is my cause. May is Williams Syndrome Awareness month but I like to think of it as “Starting a Conversation About How Williams Syndrome Makes My Child Different Month”. Catchy, I know.
You can read a bit more about Norah and how the Williams Syndrome Association has already enriched our lives here.