The Power of Prayer

When our third child was a little baby, before we knew he had Williams Syndrome, my husband and our two older boys all got a nasty stomach virus. The baby had already spent multiple days and nights in the hospital due to RSV so I really didn’t want him to get the stomach bug. I locked the two of us in my room and declared it a germ-free zone.

The baby spent a lot of time nursing and snoozing in my arms. I decided it was as good a time as any to try praying the rosary. I had never quite understood the rosary and had never committed to trying it, but while I passed those hours in my nursing glider, I did some googling and learned how to say it. On one of the sites it said that Mary wants people to pray the rosary so much that when you do it for the first time, you should pray for something big--REALLY big--because she’ll want to help you so that you’ll continue saying it. So, I prayed for my baby’s health. It had been such a tough winter because of weather and disease and I had little stamina left to deal with the baby being sick again. I prayed and prayed--always for his health.

He got the virus. Not as bad as I feared, but he got it.

When it was all over, we moved the glider back to his room. I took the beads out of the chair’s pocket, tucked them in my nightstand drawer, and proceeded to disinfect our house.

A month or two later, our son got diagnosed with Williams Syndrome.

My faith was not shaken, but I sure wasn’t praying the rosary.

We went to many appointments and learned quickly that our most immediate concern should be about his heart. Our baby had the classic cardiovascular markers of kids with Williams Syndrome. We’d have to monitor him closely and hope that the narrowing of his vessels didn’t get really bad. After doing a few echocardiograms over the coming months, his doctors would see whether he was on a dangerous trajectory or not. We had reason to hope, but we knew that catheterizations were very likely, and if his aorta was significantly narrow, he’d have to have open heart surgery like so many other babies with Williams Syndrome. We hoped and prayed that we could put off any intervention until he was bigger and stronger.

In May we got news that we weren’t expecting: his vessels looked good! They hadn’t gotten any worse, and had maybe even gotten better! As a doctor explained it to us, when it’s bad it usually presents itself as bad by the time the child becomes as old as he was. We had, and continue to have, every reason to believe that our child’s cardiac involvement will remain mild. Things can change, but it’s likely that they won’t. At this point no one predicts that he’ll have medical intervention for his heart.

It felt like a miracle, and I remembered those rosary beads. Our baby got the stomach virus, but maybe Mary was working on something bigger than I could even imagine at the time. Our child had Williams Syndrome from the get-go; that wasn’t going to change. But as his vessels grew, they grew well enough for him to be healthy from a cardiovascular standpoint.

I say all this to say that I believe in the power of prayer and I’d like to ask for anyone who prays to say an extra one for someone whom I’ve never met. I’m part of an online support group for parents of little ones with Williams Syndrome. Right now, there is a little girl literally fighting for her life in England. She’s just a little younger than our child and she kind of looks like him. If you can, please say a prayer for her and her family because they really need it. We are very lucky that we don’t have to ask for prayers like that for our son so I’d like to ask for some for her. Thank you!

There's Something Called Williams Syndrome

“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:

https://williams-syndrome.org/doctor

For teachers:

https://williams-syndrome.org/teacher

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!

To My Son's Health Condition

I will not let you own me.

I will watch bees with my children
and help them find airplanes in the sky.

I will join friends for girls’ nights

and go out on dates with my husband.

I will learn new things,

and those things will not only be

ways you might affect my child’s

digestion

sleep

learning

and gross motor skills.

I will learn those things, too, of course,

and anything else I need to know about you.

I will be his fiercest advocate.

But I will also learn

how to find enjoyment in cooking,

how to take three children to the grocery store by myself,

and how to style my hair with a flat iron.

Because you do not own me.

You are not me.

You are a part of our family experience, it’s true,

but you don’t own us.

When I make soup

it will not be to distract myself from you;

it will be to figure out why the heck people love making soup so much.

And when I do,

my baby will lie on the floor in his little gym.

His oldest brother will lie next to him,

and let him play with his hair,

and giggle because it will tickle when he touches his arm.

The peace of that moment will not be because we have forgotten you;

it will be because the toddler will be taking a much-needed nap.

When he wakes up refreshed,

the four of us will read stories together,

play outside,

take a walk up the street,

and delight in finding a robin’s nest

or an abandoned snakeskin.

My son will never shed you like a snake sheds its skin.

You are an intrinsic part of him

like any bone, vessel, or organ.

But you alone do not constitute all that he is and all that he will be.

My child is himself; he is not you.

Neither are you all that I am, or all that I will be.

You are a part of us now,

and I don’t resent you.

You are who you are

and that is just fine.

I won’t push you out of my mind.

You are free to come and go as you please.

Because I don’t own you.

But always remember

that you

most definitely

do not

own

me.