Jace’s delivery was much like my previous 3; quick, “uneventful”, and exciting.. that was until they placed him on my chest. Within a few seconds, he was whisked away as his nurse asked if I minded if she took him for a second, which didn’t seem like a question but more of a request. This was a little different than the previous 3 skin to skin deliveries I had experienced before, but I didn’t think much of it. I figured maybe they just needed to clear his airways.. that was until Justin mentioned he had a “large” birthmark on his back. My eyes were glued to the warming table across the room as my doctor palpitated my stomach in an attempt to deliver my placenta. I couldn’t even focus on what was being done to me as I watched helplessly from the hospital bed at my son.
One pediatrician came in and then an RN. I had not fully seen the extent of Jace’s condition yet as the only thing I had seen was his front side, and from there, he seemed normal. They turned Jace’s back towards me, and my stomach sank. I remember muttering “Is that… okay?”. Surely a birthmark that large, couldn’t be.. healthy. Everybody seemed so secretively nonchalant about what was happening that we really didn’t think much of it. But knowing what I know now, I just truthfully think they were not educated about his condition.

That night my curiosity got the best of me and I fell down the Google rabbit hole. Giant Congenital Melanocytic Nevus. “Cancer”, “Melanoma”, “Seizures”, “Mortality of 63%”, “Death”. The words blurred together through tear-filled eyes. How could God give me such a medically complex child when I already had crippling anxiety over my children with your everyday germs? How am I supposed to care for a child that I could see leave this life before me? I had never experienced such extreme emotions in such a few short days. I was selfishly angry that the excitement of the birth of our first son was quickly overcome by anxiety, fear, and doubts. Justin and I had waited so long to welcome a son into our family, and for lack of a better word, I felt like that was ruined. I blamed myself. I questioned myself. I almost felt like it was a punishment for something. My emotions couldn’t process what was happening.

We spent an extra unexpected 4 days in the hospital under bili lights. Because despite what was already thrown at us, why not add another curveball into the mix? Secretly I felt a sense of peace having to stay a few extra days (although my mental breakdowns would say otherwise). To be honest, I was scared to take this child home. I was scared to be away from medical professionals who could help me if something went wrong. I was so uneducated about what was going on, that I was afraid of my child.

We got Jace’s skin diagnosis at birth. A giant congenital melanocytic nevus. A 2-5% increased risk for melanoma. We could handle that. Where things got complicated was if there was brain and spine involvement. Jace had his first MRI at 3 weeks old. I remember the night Justin and I got the call from our dermatologist very vividly. The silence on our end of the phone was so loud while she carefully explained all of the complications that came with it. I was listening but I couldn’t process it. Deep down I knew Jace was going to have Neurocutaneous Melanocytosis but part of me had hoped and prayed that maybe.. just maybe I was wrong. Just as we were coming off that first diagnosis rollercoaster just 3 short weeks prior, we were put back in it again.

We hit our 3rd rollercoaster exactly 3 weeks after that second diagnosis. Seizures. The things that gave me nightmares were happening. It seemed like we couldn’t catch a break. Jace’s 2nd MRI showed no disease progression and we’ve been able to control his seizures with medication.

It’s been a while since our last big ride. Sometimes I find it hard to let my guard down afraid of that rollercoaster taking off again. The unknowns that come with his disease are a lot. I feel like we’re frolicking through a field of flowers dodging land mines we can’t see. Trying to enjoy this new beautiful life while taking the blows of what this new life has handed us. Trying to suppress our feelings of anxiety so we can live a normalized life for all of our other kids.

I’ve gone back and forth with putting Jace’s conditions out there for the world. But I think it’s important for people to understand the complications of a baby born with a rare disease. It’s important to educate and spread awareness so that maybe he’ll experience a little more acceptance in his life. Jace has taught us a lot about life. Humbled us. Made us more sympathetic and kinder. Made us stronger and wiser. I no longer question why he was given to us. As much as Jace needed us, we needed him.

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