Feeling helpless as more friends face the loss of a child

I went to a baby’s funeral last week. I have been to too many babies’ funerals. Counting last week’s, I’ve been to six in the past 15 years, beginning with my own son’s after his stillbirth in 2008.

Six.

Six children gone in what seems like a breath. Even if you are a person of faith, it makes no sense, and there is very little consolation. There is hope for heaven, but that doesn’t make the pain of the here and now hurt any less.

There is no worse sight than a casket that is way too small. Especially when it’s carried up a chapel aisle by a distraught father. And on one side of the casket, another child, the baby’s older brother, holds the handle walking silently beside them.

Someone make it make sense.

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Four of these six funerals have been caused by epidermolysis bullosa (EB). When our first son, Gabe, was stillborn, we had no idea what EB was. We were told his death was just “one of those things.” But after Jonah was born the next year with his arms and legs completely raw, we started to connect the dots.

Jonah is actually our second son with EB. We never got to meet our first one alive. I remember holding Gabe in my arms moments after his birth, admiring his broad shoulders, and his dark hair, so much like his dad’s. It was short in the front, a little longer in the back. I remember laughing through tears saying, “You’ve got a mullet. That’s not cool, baby.” I remember not knowing when or how to call the nurse back in after our time with him. How to tell her she could come take him away.

I know that indescribable, excruciating heartbreak. And at every one of these funerals, and for every one of these parents, I feel it viscerally — in my cells and down to my core. In his book “The Body Keeps the Score,” Dr. Bessel van der Kolk writes that the mind and body are reshaped by trauma, and the body keeps the score of traumatic stress. In these moments surrounding infant and early childhood death, I know it’s true. I can feel it.

Like 15 years ago in an instant

I feel the pain so deep and live in the shadow of it for weeks. I don’t grieve Gabe daily anymore. It’s been 15 years. But every time a friend’s child dies, I’m back in that hospital room, stroking his mullet hair. I’m at his graveside sobbing beside his too small casket. I’m lying in bed the night after his burial physically aching from the weight of my empty arms. I would do anything for these other parents to not have to experience it. I would do anything to take it away.

Gabe’s too small casket at his graveside service in April 2008. (Courtesy of Patrice Williams)

At the young age of 26, when I became pregnant with Gabe, I didn’t know childhood death. Now it’s a familiar acquaintance. Being so entrenched in the EB world, I know we will be acquainted for a long time. Separately from the funeral we attended, just two weeks ago, another EB child we have followed on Facebook for years passed away.

EB is cruel. There are so many mothers — families — in my world who know the horror of losing a child. How do we make it stop?

Jonah is one of the lucky ones. He is stable enough that he gets to go to school, is not wheelchair-bound, and rarely has to go to the hospital. Overall, although constantly blistered, bandaged, and in pain, he is healthy. He’s had 14 and a half years of moments and opportunities — moments his brother and so many others never had.

I’m just so sad. I hate that these parents and siblings know this pain. I hate that they had to say goodbye. I feel so utterly helpless. I pray for strength, comfort, and a peace that makes no sense in a world that makes no sense. I pray for those who are acutely suffering right now, and for folks like me, whose minds and bodies will always keep the score.

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.