Discovering a parent’s worst nightmare.

When I decided to become a parent and start trying for a baby, there were a lot of things going through my mind. Sure, there were risks involved, especially considering I have epilepsy and I take medications. But the research we did and consultations with my doctor assured me the risks were minimal, and the odds were that I would have a healthy child. Besides, I told myself, if my child had some kind of disability, so what? Both my husband and I made our careers working with people with disabilities. We were comfortable with it.

But then, yesterday, I noticed a strange ridge on the side of Collin’s head. I pointed it out to my husband, who shrugged it off as normal and suggested I do the same. But today, it was bigger, taking up more of him, like he was somehow wearing a headband beneath his scalp.

What is that thing?

So we did some research, which any new parent can probably attest to be the worst possible thing you can do when you’re wondering if something is wrong with your child, because you WILL uncover the most rare, but catastrophic thing that could happen to a baby. In our case, it was craniosyntosis, a disorder in which the skull stops growing, therefore, the brain stops developing. Its symptoms include ridges in the skull, and very small or lack of fontanels (soft spots). Reading that hit me like a ton of bricks, and brought me right back to a moment at my new parent’s group. I was sitting next to a fellow new mama, and we held our sons in our laps, admiring them and exchanging comments. She mentioned how weird it was to see her baby’s brain pulsing through his soft spot. I looked on in amazement.

“Wow!” I said, “Look at that! Collin’s head doesn’t do that. His soft spots have already closed up.”

She looked at me strangely, and said, “What do you mean his soft spots have closed up? They’re supposed to have them for a long time.”

I looked down at my baby, and wondered. I never stopped wondering about his soft spots, and now those anxious little buzzing alarm clock thoughts have turned into a blaring fire alarm, complete with flashing lights and an earthquake. Suddenly, I am asking the question every parent dreads: Is there something wrong with my baby? Something seriously wrong? Something a good nap and a dose of baby tylenol can’t fix?

Maybe. Maybe not. For a while, I went from confidence that everything would be OK to shattering devastation that left me sobbing and shaking. Now, a margarita later, I am calm. Well, calmer. Husband found a small soft spot on his head that I’d missed, which made me feel a little better. Now, all we have left to do is wait for the doctor to call us back. In the meantime, I’m left feeling incredibly humbled, and thinking about the parents of every child with a disability that I have ever worked with. The moment they asked themselves, is there something wrong with my baby? I never, ever thought that was a question I would seriously ask, but here I am, asking away, sitting in nail-biting anticipation for Monday when I can hopefully take my child to the doctor. Being a parent, I’m discovering, can sometimes be pretty terrifying.

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