Part 2 of My baby has Williams Syndrome?

“It could be worse…”

This is true. It definitely could be so much worse. I won’t even mention or begin to imagine the ways it could be worse. My intent in sharing this is to point out that just because it could (usually) be worse, this doesn’t mean that you aren’t entitled to that feeling.

Would you say, “You could be happier,” to someone who is real happy? Does that make sense. Just because someone else in the world is happier… does that mean you shouldn’t be happy? Of course not, but this was my internal battle with the grief of learning my perfectly special little boy had special needs.

I’m naturally a happy optimistic person. I know how to find the light, the optimistic solution, the positive in just about anything. So when we learned our son had Williams Syndrome (WS) we were sad, then pissed, then sad again. That rotation continued for awhile.

Being such new parents, (1 month into the role) we had so many hopes and dreams for our son. Some dreams that we truly did need to let go of. Should we have expectations for our children to carry out our ‘dream’ for them? Probably not. But we can have hopes and dreams and support them in their development to do whatever they dream to do… and really that is exactly what we are doing today, but 10 years ago we needed to learn to bath him properly, much less learn to accept a different parenting path.

After all, we didn’t choose this path.  We chose to be parents, but not this path in particular.

“God only gives special kids to special parents.”

I heard this so often I started to resent it. The more I think about it, the less I think it’s true. All kids are special if we choose to dig into their hearts, their personalities and the characteristics that truly make them who they are… then lift that up and celebrate it those special characteristics come to the surface and shine.

I also think when given the opportunity to be a parent, it’s a job, a duty if you will where you choose the level of effort you’re going to put into it. Will you train yourself to evolve, as needed? Will you choose to improve yourself in ways that benefit your children? Will you be open to constructive criticism or God forbid maybe even ask for help? We all have special kids. It’s up to us to cherish them and build up their confidence so they truly know and demonstrate to the world just how amazing they are.

Paul and I had dinner out before commuting home that afternoon after leaving the hospital. We needed to sit down and reflect on what we just learned. Our finally full and resting little baby Carter slept in his carseat next to us and we sat there looking at his beautiful chubby cheeks and pouty little lips. I remember the feeling of disbelief, yet the grief of knowing. We knew. We did. There were too many signs and symptoms that aligned perfectly. Literally, all signs point to yes. Yes, our little boy has Williams Syndrome.

Williams Syndrome Grief Understanding the diagnosis
Carter at 4 months old

I remember wanting to hold on to hope that maybe the results of the FISH test, which stands for (fluorescent in-situ hybridization) would possibly come back negative. I don’t know how long it takes for results to come back from genetics today, but 10 years ago it was an excruciating 2-week wait. When the results came back, I received a call from that same cardiologist that tilted our world on it’s axis just two-weeks prior. An additional casual conversation that confirmed the suspicion. I remember crying, again. The grief overtook the hope and I felt helpless.

Before hanging up the phone, I said, “Okay… so what do I do now?!” His reply was simple.

“You take care of him and give him lots of love. Make an appointment with your pediatrician and they will go over the steps with you, but don’t worry too much about that right now. Just take care of him.”

That’s it?

I wanted a manual and a planner! I wanted to stay on the phone with him for hours so he could tell me what to do next, who to call, what appointments to arrange. I wanted him to tell me what the future would look like. I wanted more, so much more.

What I didn’t know is that I had it all already. I had the drive to learn, the love in my heart, the commitment of my husband to walk on this parenting path with me, and our family to support us along the way.

Williams Syndrome Baby

Shortly after the diagnosis, I recall a brief encounter with an friend at a gas station, “Congratulations! How’s the baby? Healthy?”

That one word question, “Healthy?” 

My heart felt heavy. I felt ashamed that my baby wasn’t perfect and because I felt ashamed, I was disappointed in myself. Why was I ashamed of myself? Why had I added extra guilt to my plate? I had a right to grieve. I had every right in the world to be sad. And I had every right in the world to circumvent the conversation and tell them exactly what they wanted to hear. I said…

“Yes, he’s perfect.”

He was in my eyes… and the truth wasn’t any of their business, after all this person was just an acquaintance and did they really want to hear the truth during this casual assumption that everything must be perfect? This made me think…

How would we tell our family and closest friends?

My parents knew. My sister and Paul’s brother’s family knew. But extended family and close friends didn’t… I had no desire to have the conversation ever again. I didn’t want to hear one more apology, even if it was sincere.

I opted for a hand-written letter that I made copies of and mailed. I would love to have a copy of that letter today. I’m sure looking back at where I’ve came in 10 years as a person, I would have written the letter completely differently. In fact, I wouldn’t write a letter today. Today, I would wait and have the conversations when the time was right. When I was ready to talk about it.

But here’s the thing, it’s not about me or my need to have or not have the conversation back then or today. I’ve grown as a person and as a mom to know and understand that. It’s about my little boy, his needs, his health and his development.

A few months later we followed up with the cardiologist and learned that the hole in heart had closed on it’s own. I give all the glory to God for that. We prayed over him many times and feel that was an answered prayer.

Williams Syndrome Grief 2

We knew we had a lot more to learn about this parenting path we were on, but knowing his heart was in the clear for now, we felt like we were starting to accept this path and put the grieving behind us. After all, we had a beautiful little package to unfold…

Part 3… Acceptance. (Coming soon)

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