Thirty Days of Caemon–Day Fourteen: I’ve Got You

When Caemon was diagnosed with leukemia, we entered a world that felt so isolated. Of course, we were isolated. We were in the hospital on literal “isolation precautions” because he had a cold and because he was so very sick. And even though we had family and friends coming together to help us in any way that they could, we had entered a world that no one else we knew had entered, that dreadful club of pediatric cancer moms.

I’ll be honest: initially, I avoided all of the other parents in the hallways at the hospital. I didn’t accept that we belonged there or that I was truly one of them. In mind, I was still convinced that all of this was going to turn out to be a big mistake, that he was going to have some strange virus, and before we knew it, we would be on our way, marveling at what a close call we had had. But it wasn’t a close call; there was no mistake. Our son had cancer, and we had overnight become cancer moms.

In those early days—all through his treatment, in fact—I’m ashamed to say that I did not want to hear from parents whose kids had died. I didn’t want to be reminded of my own child’s horrible odds, odds that we weren’t talking about, but it was unavoidable. A certain sign would appear on children’s doors when they were dying or had died. “Code whites” were called when kids stopped breathing, or worse. Reminders of our son’s mortality were all around us.

People asked if I had read the blogs out there, the other cancer mom blogs. Some nurses warned me against it, that getting into the headspaces these other parents had could be really detrimental to our desire to be positive. I did avoid them for the most part, and then, as I kept writing to update people on Caemon’s status, I realized that I needed to write a blog that wouldn’t be so scary to find, that other parents might actually benefit from reading, and that is where all of this was born. What I couldn’t have known was that this little bit of effort would prove to be a great connecting force to other cancer parents, and later, to other bereaved families as well.

It wasn’t long after Caemon died that we started receiving the occasional message from a family whose child was recently diagnosed with JMML. In those early days, it was hard to know how to be there for anyone who was just starting this journey, particularly when our child had had the worst possible outcome, but I sent resources, talked with parents over email, even sent a few care packages to parents in the hospital. It became evident in those moments that I had something to offer and that it felt good to give to parents who were in this horrible place we had been. It pulled me out of my own agony for a short time, and any reprieve from that was welcome.

A few months after Caemon died, I learned that the son of a doula classmate of mine had been diagnosed with leukemia, and he was being treated at UCSF. I reached out to her, not sure if she would want to hear from me given my son’s outcome but also knowing that there was no other choice. When someone’s child gets cancer, the worst thing to do is remain silent—but we also knew the ins and outs there. We knew that if she wanted the support, we could help. We made trips to meet her outside of the hospital (it was still too fresh to go inside), and we brought little care packages, bought her coffee, and mostly, we sat and talked, listened to what was happening, offered tips on how to make life a little easier. As hard as it was for us, and as hard as it must have been for her to face two moms whose own boy had died of leukemia, an important friendship was forged, one that would be even more vital as her own son relapsed and then passed away a few months ago. She told us a few times throughout the course of her son’s treatment and as he was dying that she looked at us with hope, that in seeing us alive in the world without our son, she knew she too would be able to live on without her son. And while she has her own path to walk through her grief, I see her doing it. I see her finding life through the anguish of her lost boy.

The number of bereaved parents who have contacted me, who have taken solace in my blog or in our direct communications is sort of surprising to me now. It’s not that I have any profound wisdom to offer them. I don’t know what it’s like to lose a baby just after he’s born. I don’t know what it’s like to lose a twenty-year-old child to suicide. I don’t know what it’s like to have a child die suddenly and unexpectedly, but I do know grief and how it festers and how, like a persistent toddler, it demands to be acknowledged. I know how crippling it is to live without one’s child, how desperate one feels to simply know where that child is. I know how desperately bereaved parents need to be seen, how their children need to be remembered, and how, more than anything, they just need people to be there, even without the “right” words to say.

I never imagined that this would be a part of Caemon’s legacy, that part of my dedication to honoring him would include honoring all the children I know of who have died while becoming a listening ear for their parents. But it also makes sense.

In the last eight months or so of his life, Caemon, when seeing me sad, would say, “Mommy’s sad. Come here, Mommy. I will comfort you.” He would hug me, pat my back with his little hand, sometimes even hold onto both sides of my face. “I’ve got you, Mommy,” he would say. That little nurturing soul always made me feel better.

So I guess when I reach out to these parents, when I respond to their calls for help, I’m doing a little of the same. I’m letting them know, I’ve got you. I’ll be here. Because childhood cancer and bereaved parenthood are dark, lonely places, and if I can lend a light or a hug or a listening ear, it’s what I’ve got to do. No one should walk these paths alone.

Caemon comforting a delicious (but sad) pumpkin muffin he made