Celebrating 13 Years of Our Miracle

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by Patrice Williams |

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I went down a rabbit hole this morning reading my old blog posts from 13 years ago, when our son Jonah was born. I teared up as I read the prayers I requested on the eve of his birth.

My husband, Matt, and I had lost our first son, Gabriel, to stillbirth the previous year, likely due to junctional epidermolysis bullosa, though we didn’t know it at the time. And we were so anxious, because we knew — even at the young age of 27 — that terrible, unimaginable things can happen.

I was on my knees with tears running down my face the night before Jonah was to be born. I prayed over and over again, “Just let him live. Just let him live.” After Gabe’s death, my thoughts and plans for Jonah’s life couldn’t extend beyond that.

Sure, I had the crib, the clothes, and the car seat, all left over from Gabe, and things were ready. But in many ways, it just felt like going through the motions: I will do these things because this is what you’re supposed to do when you are pregnant.

But there was a part of me that couldn’t imagine a baby coming home. In our history, babies didn’t come home.

We had no reason to think anything would be wrong. Doctors said Gabe’s death was “just one of those things.” Before losing him, blissfully innocent and ignorant me didn’t even know that babies were stillborn at 37 weeks. Needless to say, during my entire pregnancy with Jonah, I was a nervous wreck. There was no “safe” week of pregnancy I could reach that would make me feel like it was going to be OK.

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Despite assurances from doctors and well-meaning friends, I just had a feeling — and that feeling scared the ever-lovin’ you-know-what out of me. What if we lost another child?

I would not survive it. I was certain.

The morning arrived, and we provided regular updates on our blog to our handful of followers who had been praying for a safe delivery. And late that night, when we knew things most certainly were not OK, and after Matt had gone with Jonah to the NICU of our city’s neighboring hospital, he called me with an update, and I posted again.

miracle | Epidermolysis Bullosa News Today | A 13-year-old photo shows Patrice in a hospital gown saying goodbye to her then newborn son Jonah, who is being prepared to be transported to another hospital's NICU

Patrice says goodbye to her newborn son Jonah before he was transferred to a neighboring hospital hours after his birth 13 years ago last weekend. (Courtesy of Patrice Williams)

An excerpt from that post still gives me chills:

“I can’t explain to you how our lives have turned from elation and happiness to complete heartbreak in a matter of minutes. We are both so low right now. It is so difficult to remain hopeful. This is very serious. Please continue to pray for our strength, that Jonah is the toughest baby ever, and for a miracle.”

Last Sunday, my Jonah turned 13. A teenager. The miracle I asked for had come true.

He is a miracle.

As of today, we’ve had 4,752 days of loving this kind, compassionate, gregarious, and hilarious child on this side of the womb. We were told there was an 83% chance we wouldn’t even get 365 days. I am overwhelmed with gratitude.

My favorite comment from another EB mom in those first days when things were so scary was, “It is too soon to know what his future will look like. The doctors don’t know. This is NOT a death sentence.” From that point on, I tried hard to believe in hope. And oh, how we hoped — hoped and prayed and did all the hard things to give him the best life we knew how.

miracle | Epidermolysis Bullosa News Today | Patrice and Jonah play with a large stuffed animal on a blanket on the floor several years ago when Jonah was an infant

Patrice and Jonah play on the floor when he was an infant. Jonah recently celebrated his 13th birthday. (Courtesy of Patrice Williams)

Jonah had survived. We were determined to make every day count.

And they have counted. Jonah will soon finish the seventh grade. He has good friends, hobbies he loves, and a lust for life. Despite his pain and struggles, he is mostly positive and works hard to make the most of his days, even when they’re significantly altered because of EB.

Last weekend, for his birthday, we saw “The Lion King” off-Broadway, watched our beloved Wake Forest basketball team clobber Louisville, and had friends and family over for Jonah’s favorite wings, pizza, and cake. On Monday, we will head to Mexico as a family for our boys’ first trip out of the country. More importantly, we’re loving one another big and laughing every day.

I’m so, so thankful for the everyday. For every day. It is no longer as difficult to remain hopeful.

Our miracle lives.

miracle | Epidermolysis Bullosa News Today | Jonah smiles for the camera while sitting at the table behind two large birthday cakes on his 13th birthday last Sunday

Jonah celebrates his 13th birthday on Feb. 27. (Photo by Patrice Williams)


Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.

Comments

Richard Poulin avatar

Richard Poulin

Thank you for resharing this personal and harrowing story. It is difficult for me to revisit old pictures or posts. However, I know it is important. It helps to realize the accomplishments that have happened, but also the greatness that has come out of challenges. It was inspiring to read how much you and your husband have accomplished. Your outlook on life is a perspective that should be adopted by others!

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