This community is brave and strong, resilient and supportive. But the truths we face, the very ones that bind us together, can also be the ones that shatter us over and over again.

It had only been a few weeks since Adelaide died and we were sitting on a bench in Downtown Disney spending time with one of our fellow epilepsy/rare warrior families. I was running on sheer adrenaline derived from the fear of facing the quiet when we returned home - a home without Adelaide. While holding their amazing daughter, who reminded me so much of my own, Bud and Maggie admitted to me that they knew they would most likely outlive their Emma. This was their reality and one they could not escape. They confided in me that no one wanted to hear this, that folks would rather pray for miracles but that wasn’t helpful for their family. Instead, by acknowledging the inevitable, Bud and Maggie were better able to appreciate the time they had with Emma. However long or short that may be. I had never heard someone say this out loud before and as upsetting as it was to hear while holding their sweet and sassy girl, their honesty helped me feel seen.

The hardest truth that many parents of medically complex and fragile children must face is that we will outlive our children. On the rare occasion a parent admits this out loud it is often denied by refusing the facts and statistics that we, as parents and caregivers, have long labored over in the dead of night. It is not supposed to be this way, but it is. Denying for the sake of others’ comfortability doesn’t make it less true. However, what I didn’t realize is that, not only would I have to accept that I would outlive Adelaide, but by being an active part of this community I would look on as countless other parents outlived their children as well. 

Before Adelaide died I watched families make decisions I knew I would also have to make at some point. How much did they share? How did they prepare emotionally? Logistically? What does grief from child-loss look like? Seriously, I scrolled through my instagram feed taking mental notes - how messed up is that? Then when it was our turn to be the unimaginable family I felt the need to pay it forward, to be as honest as I was comfortable being about what we were going through because I knew there were other families out there scrolling through taking their own notes. 

And so the cycle continues. 

But then, in an extra cruel turn, we remember that our child was not the first, and realize they will not be the last. The very families that have become our support systems, our brothers and sisters in medical arms, will experience the same loss and trauma we have. We may never have met them but the shared experience of this crazy medically complex life makes that fact irrelevant. Parents that once cheered each other on during hospital stays are making the same decisions I once made. Will they bury or cremate? Where will the service take place? Is it time to withhold feeds? Add morphine? How unbelievably messed up are these questions? It isn’t fucking fair that any parent should be forced to answer them - but we do - and this community more than most. 

I don’t have a pretty bow to tie this post up in. Children shouldn’t suffer, parents shouldn’t have to plan funerals for their babies, but they have since the beginning of time and they will continue to do so. When a parent loses their child an unspoken bond is formed with other parents who have lost children. A common understanding of the pain and how every time we learn of yet another life lost entirely too soon we feel the loss, even if just for a few moments, just as deeply as our own. The response, the memories, they are visceral. As much as I would love to bury the memory of the phone call to the funeral home or the decision to withhold care we would have once delivered emergently, it takes just one picture, one caption to bring the trauma of it all flooding back. 

And so the cycle continues.

Science does not yet allow us to stop the cycle, but maybe by acknowledging it, by removing the taboo aura around discussing it, we can better support one another in a way that is truly helpful. 

Written in memory of those we’ve lost and in comfort of those we are losing.