"if it'll keep my heart soft, break my heart every day."
~Warsan Shire
Today has indeed broken my heart anew. Another child with EB has died, a beautiful little boy named Raul. I could write about how unfair it is, how wrong, and rail at the universe, but to what end? Burying your child is a horror that no one can understand the depth of until they experience it themselves. I know this because for so many years, I witnessed child after child with EB die, and I attended their funerals, hugged their mothers, and I thought I knew. I was wrong, and I'm humbled and brought to my knees by that realization. And today my heart hurts for Raul's mother, who is experiencing that same shock and horror, that no matter how terrible she imagined it would be, it's worse.
Each of these losses bring me back to my own. It's been two years and four months, and part of me is still in that bright white emergency room, watching her take her last breaths, the helpless medical team standing by. I did that. "let her go." I said those words. I did it to spare her pain and fear and surgery and cancer and amputations and I know I did the right thing, but it's such a heavy thing to live with. Some days I can't drag it along with me, and I have to just sit with it and let it crush me a little. Today is one of those days.
It's such a strange place to be, this little bubble world where you have lost a child to the condition that made you a part of a community. For 17 years I relied on the parents and adult survivors with EB, and many of them relied on me too. They become friends, family, mentors, heroes. But after your child is gone, that role, like so many others, changes. You no longer attend the patient conferences or keep up with the latest research, you don't know the newest wound care products or the names of all the regional sales reps for all the wound care companies. You are something both respected and feared; someone who survived EB, but a constant reminder to those other parents that no matter what they do to save their child, they will walk in your shoes someday. You feel a bit like the grim reaper, standing in the shadows, reminding them of what's to come, and try not to feel hurt that they (naturally) need some distance from one more reminder of what this disorder is going to do to their child.
You are no longer the parent. No longer the caregiver. No longer the advocate or expert. You are the harbinger of agony. And it breaks your heart, because for all that you now represent, they still don't know. They can't know. Your life is the boogeyman, the After, and you want to save them, every mother and father who is drowning in this monsterous grief, but you can barely keep your own head above water. So you all flail together, apart.
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