Thank you all so very much for all the incredibly loving and supportive responses to Sunday’s post. I told one friend that the danger of Blogger Mobile is that it allows me to kind of throw my thoughts and feelings up here the moment I’m having them, whereas when I sit down to the computer, it’s usually after some time to mull on my thoughts and feelings and try to get some perspective on them. Of course, this is the gift that writing (and your responses—our “conversation,” as it were) gives me. The process of writing, and of reading your responses, helps me understand my own thoughts and feelings better—it has done so from the very beginning, in those dark days after Hudson died, and it has continued to be such a gift to me during this most recent experience with cancer.
What I came to understand better as I read your comments here and on Facebook was that Sunday’s post was not about my hair, or even my disease. It was about my grief, my ever-present grief over the loss of my child. I had an inkling of it when I wrote it—as I said, the worst part of not having superpowers is that I have no powers to bring her back.
But what I realized is that I was suffering through another PTSD-like experience that took me back to those terrible days in the hospital, from the moment I watched her lay on the bed without flinching as a nurse stuck an IV in her hand to the moment after the doctor and nurse removed all the equipment that was keeping her alive, and I picked her lifeless body up off the bed and held her close to me and rocked her for the first time in three days. The total powerlessness I felt when that hair came out in my hands again just brought back in Technicolor the sheer powerlessness I felt during those long days that ran into nights that ran into days, as we learned that she had bacterial meningitis, as she was admitted to the PICU, as the doctors told us that children in her situation might suffer brain damage, as she began to have seizure-like episodes in the middle of that first night, as the nurse first noticed her pupils responding unevenly to light, as the first CT scan showed significant damage to her brain, as we waited for her to come out of the medical coma, as we saw her respond briefly and felt hope rising in our throats as she tried to rip her ventilator tube out, as we later learned that both her pupils were blown, as the second CT showed massive traumatic brain injury, as we waited to learn what would happen next, as I watched the nurses remove her ventilator to clean it and I saw that she was taking no breaths on her own, as the doctors told us about how the tests for brain death worked, as they performed the first brain death test and saw no evidence of brain activity, as we spent the next 24 hours waiting for the next test, knowing that if there was no change, the doctors would be required to remove all the life-sustaining equipment and we would have to say goodbye forever. My hair came out in my hands and all of that came barreling back to my mind as I remembered how incredibly powerless I felt as with each passing hour, I saw my girl slipping farther and farther away from us, knowing that ultimately she would never come back. How much I wanted to be able to do something to save her. That awful, hopeful moment when I stripped my shirt off to hold her, in a desperate hope that lying skin-to-skin with me would help her body temperature come up when her brain was failing to do one of its most basic jobs. Bringing her favorite music and books to the hospital thinking that somehow, if miracles happened, they might make a difference and bring her back to us. Lying next to her in the bed and talking to her in hopes that she could hear me and know that we needed her to come back. All that time, knowing, from the moment the doctors told us about the second CT and told us that IF she survived, she would not be the same child we knew before she got sick, knowing all that time that she was going to die. Knowing all the time that the music, the books, the talking, the lying close, the holding skin-to-skin, none of it was going to bring her back. Perhaps (and I hope with all my might that this is true) those things did something to help shepherd her lovingly and gently out of this life and into whatever journey came next for her, but I knew that it would not bring her back. I knew, in spite of everything I was doing, I knew nothing was going to bring her back.
And so it was with my hair. I could shave it into a mohawk and dye it purple and look like a badass and even feel like one for a while, but nothing could stop it from falling out. Nothing could stop me from having cancer. And of course, I knew that the entire time. Of course I did. Just like I knew that Hudson was going to die.
And that’s what Sunday’s post was about. It was about how our brains can know one thing with certainty and yet we still try to fight that certainty any way we can. It was about powerlessness. It was about a mother’s still-constant grief and lingering guilt over not being able to protect and save her own child.
But then I heard from you. And I gained perspective, as I always do. It’s true that I don’t have any superpowers that could save my child, or stop my cancer, or keep my hair from falling out after chemo. But you all helped me remember that I do have some pretty amazing superpowers at my disposal. LOVE is a superpower. HOPE is a superpower. I have these things in an abundance that I never knew possible, in an abundance that I imagine many people never get to experience, in glorious abundance in spite of everything that has happened. And on top of love and hope, I have COMMUNITY. I have a community of supporters, both in real life and virtually, that has kept me afloat when otherwise I might have drowned, that has kept me walking when otherwise I might have stumbled, fallen, and never gotten up, and ultimately, a community that has helped me learn to fly—in the face of the darkest tragedy, I have learned to fly. Community is its very own superpower, and I remain humbled and grateful for that incredible gift that you all have given me.
Love. Hope. Community. In the face of powerlessness, superpowers. Thank you, friends.