“There’s something called Williams Syndrome.”
That’s what a cardiologist said to us about a year ago. I
had no idea what Williams Syndrome was, and why would I? It affects only 1 in
10,000 people worldwide. It’s a very rare genetic condition that usually
happens randomly. According to the Williams Syndrome Association’s website, “it
is characterized by medical problems, including cardiovascular disease,
developmental delays, and learning disabilities. These often occur side
by side with striking verbal abilities, highly social personalities and an
affinity for music.”
I didn’t know all that at the time.
But I did know, as soon as the doctor said those words, that
my youngest of three sons had it.
I had noticed enough dots—medical and developmental “quirks”—
in my son’s first few months of life to know that there was probably a way to
connect them. That day, I knew we had found our connection.
It was scary and sad but we had three children to take care
of, including a baby that we were still getting to know, so we learned what we
needed to, attended the appointments that we needed to, and did our best to
survive our first year.
We’ve been blessed in many ways. Most importantly, our son’s
cardiovascular issues appear to be mild. He has developmental delays and some
other issues, but thankfully he is our third baby so we are more experienced,
more distracted, and more exhausted to be too bogged down by all that. There are lots of things that are hard, but
there are lots of things that are really good.
Most days, we focus on the good.
MAY is Williams Syndrome Awareness Month
I have struggled
with how “aware” I want to make people of Williams Syndrome. I have
always wanted everyone to think of my child as an individual—our son, who is as
cherished as the others, who is adored by his brothers, and who has added so
much joy to our family. I want people to know him, not just be aware that he has some rare genetic condition. And
I don’t even know what to make people aware of because I’m still figuring out
how Williams Syndrome will affect our child!
But he is now over a year old and I feel like we all really
know him as his own self. He is cute and funny. He loves to smile, laugh and
watch the big kids at home and at daycare. He enjoys music, playing, listening to
conversations, blowing raspberries, engaging in lengthy back-and-forth
babble-dialogues, and—more than anything—snuggling.
We love him. So
much. He is not different from us; he is one of us.
You are now aware that Williams Syndrome exists. Now what?
What’s so important about being aware of
something that is so rare? For one thing, if you are a medical professional or
an educator, it is VITALLY important that you be aware that Williams Syndrome
exists and that there is important information you need to know if you ever
encounter a person with Williams Syndrome while on the job. Here are two useful
links to get you started:
For medical professionals:
For teachers:
And what if you’re not a medical professional or educator?
You may not ever meet a person with Williams Syndrome, but
you might. Chances are, you’ll know it if you do! Our baby is still quite young
but from what I understand most people with WS are friendly—very friendly. The friendliness may
surprise you; I imagine it would surprise me if I didn’t have an understanding
of Williams Syndrome. So, now that you know about it, please don’t let that
highly social personality keep you from being friendly back. Remember that the individual,
if he or she is anything like my son, has a lot of love to give, and has a lot
of people who love him or her.
Even if you never meet a person with WS, there are a lot of
people out there with rare conditions—ones that I’ve never heard of, either. You’ll
meet some of them in your life. Now, when I meet someone who seems different
than me, I realize that we probably have more in common than I might have once
thought. I hope that I am a little more accepting and a little kinder. For the
sake of my child and all of us who are different in some way (because, who isn't?), I pray that we all will be accepting and kind, the way so many
individuals with Williams Syndrome naturally are.
Want to help?
If you'd like to donate to the Williams Syndrome Association, please visit this website. "A gift of any amount will have an immediate impact on our understanding and treatment of WS." Thank you!
