Navigating the Future as a Parent of a Child With a Heart Defect

I hold the hair brush firmly as I pull it through your damp hair, the blow dryer singing its monotone chorus. You sit before me on the floor, long lean legs folded across each other, grinning excitedly while I try to tame your hair. It’s grown so much in three years.

I think about your hair while I’m working. I notice how it curls at the back, but remains straight in the front. I remember how, when you were first born, it was nearly black, but now it’s a soft honey color that reminds me of my own. It’s soft and fine and impossible to keep in a hair-tie — its lovely, just like you.

I think about how we managed to keep it intact despite the multiple hospital admissions where they had to place scalp IVs. I remember the nurse asking me if that was OK. I was dumbfounded — of course it’s OK. Wherever they can get an IV with as little trauma to your already traumatized body was fine by me. She sensed my confusion and quickly explained some parents don’t like scalp IV’s because they have to shave that area of the head. I had to think about that a little longer until it occurred to me she was asking me if I wanted to preserve your hair.

What a strange sensation that was. It was one of the first times it became clear to me that your father and I would forever be living a dichotomy as your parents. We would be balancing all the typical parental responsibilities and aspirations along with all the new requirements of having a child with only half a heart.

There are two sides to every scenario — how this (whatever this may be) will impact you mentally and how this will impact you physiologically. I think parents do that to some degree, but when the stakes are so high, every choice is filled with a measure of uncertainty that your father and I often discuss over and over. I find myself both thrilled and anxious about the things you will become passionate about. I love to see you grow, develop and learn; to find your voice and your dreams. At the same time, I think about how we’re going to help you navigate your health so you can aim as high as you’d like. I ask myself a hundred times what impact this could have and whether the emotional benefits outweigh the physical risks. Do I sign you up for swimming lessons? You love the water, but how will it impact your profusion and your breathing? Do we start preschool? You are so social and love to learn, but colds and flu are so much more prevalent. What do I say if you want to run track? What if you want to study abroad away from all your doctors?

Your father reminds me you are only 3 and just as you will grow, we will also grow and learn and become better at being your parents. Of course, right now the road seems riddled with missteps and barriers, but I have faith that clarity will come. I have faith that you will help guide us just as much as we will guide you, perhaps even more.

I disengage the dryer and give one final brush through your honey hair. You throw your arms around me, as is your custom when the hair drying part is complete. I hug you back and breathe in your clean, sweet scent. It may not always be obvious which way we should go, but together, we will forge our path — hand in hand — never alone.

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