Moms

Gracefully accepting a birth defect

“I will hold myself to a standard of grace not perfection.” From the cover of Angela Williams’ upcoming book, “Gracefully”.
“I will hold myself to a standard of grace not perfection.” From the cover of Angela Williams’ upcoming book, “Gracefully”. Photo by Brandy Cardarelli Photography

Charlotte mother Angela Williams will publish her first book next month, Gracefully, as healing and encouragement for other parents going through the experience of finding out their child will be born with a birth defect. Read on to see the beginning of Williams’ courageous path to understanding and embracing her daughter’s diagnosis.

"What do you know about Club Feet"?

The echo of those words will never leave me. This is how we found out our daughter would be born with a birth defect. Something that I had only heard about, at the time, on badly written television shows. Someone would trip and the joke would be, "What, you got a club foot?".

Tears.

Moments earlier Brett and I, in an ultrasound room, had cried tears of joy. We had found out we were having a baby girl. I can still remember the hot tears running down my left cheek as I turned to grab his hand over my shoulder. He squeezed it as if to say, "We got our girl". Cooper would have a baby sister. It was reading perfectly: tutus, dance classes, pink onsies...it was all coming true. Somewhere deep inside I had already planned her first birthday party. Over-the-top pink everywhere kind of party with cotton candy floating through the air.

Then, within seconds a Doctor was in the room telling us it was more than that.

All I heard was our baby girl wasn't perfect. I imagined a wheelchair. Long metal braces. Would she even walk?

And how would she dance?

As a parent you want to give your child the opportunity to run past that line - to reach every corner of what's beyond. That's why the news of Club Feet was so difficult. We were being forced to find a solution before we even started. Could we make sure both of our children had the same starting line...and the same bright sky?

No matter what situation a parent faces, the circumstances can be heartbreaking. Gracefully came from a place of healing and hope for the future.

The most precious baby girl was now a part of our family. May 10th, 2012 was officially minted on our hearts. She had iridescent blonde locks, blue eyes and she screamed until bright red, just like her big brother had. For all the worry, some things were normal, and I could be hopeful.

It was a revelation I hadn't thought about. I had expected the day to be all about her feet. Painful and raw. Thankfully, she was just a baby needing to nurse, a 4am wake-up call worth answering and she rested on our hearts for hours. There was though, a moment, when she was lifted into this world and the whole room stopped. I could sense all eyes catching the first glance.

Brett, by my side the entire birth, drifted quickly over to her side. I turned, this time over my right shoulder, and asked him if she was okay.

"Yes".

Elle was then only 6 days old and we were taking her to OrthoCarolina, a pediatric orthopedic hospital. Her journey had begun. But who would be there on the other side waiting to meet her? Our baby Elle deserved the best care. The best doctors. What would their philosophy be and would their approach to care be a good fit?

Issues? I listed Club Feet, handed back the paperwork and waited. We were taking her in to be seen and what we prayed to hear needed to be extraordinary.

We were afraid.

We were greeted. I can still remember the moment I lifted Elle's baby carrier up and over my arm to leave the waiting room. And even though it was the same seat I had carried Cooper in when he was that small, this time, the weight was tremendous.

In the comfortable room we waited, nervous but ready. I rolled Elle's tiny socks off her feet. Would the doctor be prepared? Would they know how to help our little girl?

A knock came and the heavy wooden door opened. Dr. Christian Clark introduced himself and sat down.

He was smiling.

Elle's feet were in heavy casts from mid-thigh to the tips of her toes. Cradling her in the crook of my arm wasn't possible anymore; I had to hold her with great care. When someone generously offered to hold her, I was hesitant; it broke my heart that they might cringe at what they felt on her legs.

The casts were harsh looking. Rough. And so incredibly heavy on her tiny 7 pound body. They banged together and pulled her soft skin when she moved. Baths were tricky and I knew when she cried it could be that her skin was itching... and that I couldn't help her.

We both cried every Thursday when the old plaster was cut off with a tiny but loud saw, only to be replaced with new wet plaster that would harden before we even reached the car.

For a day or so Elle would cry from soreness from the new adjustment - her soft bones being held in the new position, ligaments and tendons being stretched. We cried together. And sometimes, for me, it was a reminder of her tiny row of pink shoes standing at attention waiting to be worn.

Five weeks crawled by and the final set of casts were removed. Her feet, that I had missed holding in the palms of my hands, were resting in a neutral position, no longer turned up and inwards.

They were beautiful.

Dr. Clark reminded us the hardest part was next: successful permanent correction of Elle's feet would require diligent, long-term wearing of a Ponseti brace.

All day. Every day.

We would be religious about her wearing the brace. 23 hours a day for 3 months. Then hopefully just at night.

For years. Until her feet would rest in a neutral position and not revert back.

But what else could I do? How could I help her beyond that time? What if she were to have a child someday with...gulp...an issue? How could I monumentally make a difference for her as a mother?

Deep within was a glimmer born in the moment I saw the smile from Dr. Clark. He had released the paralyzing fear in me. I needed to do something to mark that moment for all parents or relatives going through a difficult diagnosis of a child. A way to release the brace of the diagnosis. Of the worry. Of the hurting.

I had an idea. A story.

It would be our mark: A book.

One day I sat outside Elle's room while she napped, my back up against the wall, and wrote Gracefully. I was the subject-matter-expert. It felt monumental to get down on paper the words I had needed months before.

But how would I share this story? I needed to make it happen.

At Elle's next appointment, encouraged by Brett, I shared with Dr. Clark what I was up to. He was excited. He got it: I wanted to help other parents.

But did I have enough grace to create something extraordinary? I looked to my children. Elle was taking on the journey herself - showing me where pure grace comes from: within.

Gracefully can be purchased at: www.angelaerinwilliams.com

Angela is a writer and author living in Charlotte with her husband, Brett, and two children Cooper and Elle.

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