I am holding his hand, but I can’t form words. In truth, there is nothing to say. It occurs to me it has been a full day since we have spoken to each other. It’s a blistering hot day, and I take note of the heat the same way I might notice a buzzing fly; it is around me but I cannot feel it.
My phone rings and it’s our friend who has told us to take a break and “get outside” since it would be a while, a few hours more waiting.
“The doctors are here with the results.”
I don’t say anything to my husband, just spring from the bench and sprint for the hospital door, his footsteps behind me. I am grateful for the mostly empty hallways as we run, my husband shouting the way behind me — “Right!” then “Left!”
I begin to cry as I sprint, my chest burning and arms pumping, crying because I don’t know what I am sprinting toward. The tears slide down my cheeks as I speed past blurs of people, never slowing. Whatever it is, I must get to it.
The night before, our ten year old daughter Iris had been admitted to Children’s Healthcare of Atlanta. There had been pneumonia and antibiotics and just when she appeared to be getting better, a limp had begun. I’m the idiot parent who had recently bought a backyard trampoline, so I told myself that could be it, but even as I thought it, I knew it was a lie.
“It’s bad news,” the kindly ER doctor told us hours into the night. I would be old and gray and remember It’s bad news. There are some things that instantly imprint into your being, like a raggedy edged signature carved in fresh cement.
A bone infection, they said. Bacteria from the pneumonia likely got into her bloodstream and traveled to her knee. They would start strong antibiotics right away because bone infections are stubborn things, tough to treat.
We were scared, but would experience a new level of fear the next morning when doctors swarmed our room announcing antibiotics were being stopped because they believed it to be a tumor.
Could it be cancer? It could. They didn’t know.
I had told stories of children with osteosarcoma. That, combined with some googling confirmed that tumors in little childrens’ bones are almost never good.
Off she went to the MRI tube, weeping bitter tears of fear. A childlife specialist walked her through it, and I sat next to my ailing daughter, wishing there were a momlife specialist for me.
It was after that late afternoon sprint that the doctors would tell us we were back to bone infection. Just a bone infection.
Thank God for a serious bone infection.
In the two weeks that followed, our little girl would have surgery to remove infected bone from her tibia. The drugs to fight the infection were so strong they would consistently blow out her tiny veins, necessitating daily new IV’s. The care we received was extraordinary but it was still hideous, because watching your child suffer is the definition of hell.
Another team of doctors believe her bone infection is instead a rare inflammatory disease that affects 1 in a million, a disease that is difficult to diagnose and precisely mimics bone infections. 1 in 1 million. Overachievers-R-us. As of this writing, we still don’t know. I have made peace with the fact we won’t know for a while.
It hurts my heart that people whose children have been diagnosed with cancer will read this, how we dodged that bullet, and it pains me that they may feel resentful or angry that their dread and fear was not alleviated, but was instead confirmed. I’ve told too many of their stories. I love many of them, and I know how it happens, that in a horrifying instant the bottom falls out of your life. We see and read the stories every day, secretly feeling guilty yet grateful those people are not us.
I will never forget the hours we lived in the in-between. I researched and had conversations and made decisions, while out of my body. I was breathing but I couldn’t get air. I was walking yet my legs were a thousand pounds of solid lead. I heard myself delivering opinions and participating in discussions, yet I couldn’t think. The non stop soundtrack that lives in my wacky head came to a halt that day. The chatter of my constantly unspooling inner-narrative vanished. The silence was terrifying. Even prayer fled me. At the moment I needed it most in my life, I could not pray. Prayers were replaced by grunts of ‘please’ and ‘help.’
The sight of my daughter was exquisitely unbearable. The sprinkle of freckles across the bridge of her little nose. Her wide hazel eyes looking to me for reassurance. Her weak hand with its brightly painted fingernails intertwined in mine. The sight of the dozen stuffed doggies and kitties that shared her hospital bed.
The utter innocence of her sweet little soul that had done exactly nothing to deserve this.
Almost a month after surgery, Iris is running and playing and slowly regaining weight.
Friends remarked that I must have cried a lot. I don’t think I shed a single tear (aside from the sprint) in the hospital. I was in med school, trying to fill my head with information so I could advocate for my child.
All those pent up tears came out a week after she got out of the hospital, when my husband and I headed to Washington D.C. for 16 hours to see U2 (tickets my husband had bought half a year ago), my favorite band of more than 30 years.
I stood at a concert I had first attended 30 years earlier, a lifetime removed from the 17 year old me who had no idea what the future would deliver her, who had no idea that grown-uphood would be unbearably beautiful and awful, often at the same time.
Young me wasn’t so sure she could do that ‘family’ thing and would much later realize that the sound of your husband and children laughing in the next room is the holiest sound on the planet.
Seventeen year old me would one day understand that “I love you, Mommy” is the single most powerful sentence anyone would ever say to me.
My younger self had yet to learn that she would gladly offer up her life so that her child might be okay.
I wish it weren’t the case, but sometimes it takes awful, scary shit to force you to step back from your life and see it for what it really is, an unlikely miracle held together by duct tape, tears, laughter, hard work and dumb luck. I sobbed so fitfully at that concert, I’m fairly certain the poor woman next to me thought I was not of sound mind.
How could I explain to a stranger that I was having an epiphany? That sandwiched between the jobs and the bills and the lack of sleep and the kids and the worry is this luminous thing for which we all yearn — life.
It is rich and unpredictable and unbearable. It is elevating and utterly crushing, and I would choose it again and again and again.
Come what may, we have her.
And she has us.