When parents face the worst thing

Every week, I speak to the parent of a child who has been diagnosed with a fatal disease. Each one of these conversations is remarkable and sacred, and I approach these conversations with the deepest reverence.

In most cases, these children will die. The child’s diagnosis has come too late to save them.

On the rarest of occasions, when the child’s diagnosis gets caught in time, I have the chance to offer parents hope.

It is wonderful to comfort them with the words that they will have the chance to be witness a real-life miracle. Yet, even for those so-called lucky ones, they will pay a price for their miracles.

Miracles do not just happen, they must be earned, and they always demand a sacrifice.

I have a complicated relationship with hope, when someone you love is sick, hope feels cruel when your child is dying. Expectations are the root of all heartache.

In the US, we call the sick warriors and fighters. This is a terrible metaphor: it implies that some of us get better because we fight. I tell families this is not true, sometimes surrender is the wisest strategy. When you must surrender, as Atul Gawande once wisely observed, you don’t want to be General Custer.

Thirteen years ago, my two-year-old daughter Cal was diagnosed. That terrible “diagnosis day” a neurologist named Amy Waldman walked me through what Cal’s illness was. I was so scared, I would not even say the name of the disease.

I remember that my time with Dr. Waldman saved my life. You see, as I sat there in the examination room speaking to her, I was calculating how fast I would have to run and how hard I would have to pull to open up the window and leap to my death from the hospital’s ninth floor. Looking back, I was having some sort of psychotic episode. Grief makes you insane and dangerous and deranged. Courage comes later.

Dr. Waldman could not save Cal, but it was clear she was determined to save me.

Dr. Waldman held my hand so tightly, I can still feel her cool, slender hand gripping mine as she fought her tears so she did not want to burden me her sadness over Cal’s diagnosis.

More than a decade later, I try to recreate the gift of my time with Dr. Waldman for the families who contact me. I wonder how other parents survive the worst day if they don’t have a Dr. Waldman to bear witness.

My husband Pat, who loved me so deeply, could not bear to watch my nervous breakdown after Cal got sick.

So many people in my life just wanted me to be brave. Even the hospital social worker advised me to learn to cry in the shower.

Thirteen years after Cal and Pat got sick, I have a rather complicated relationship with being called brave. I know most people mean it as a compliment, but it doesn’t feel like one.

To most well-intentioned people (including the hospital social worker who should have known better), shutting down your feelings is bravery.

Clearly, micro-dosing denial and stoicism to navigate a crisis is fine, but existing in a constant state of numbness or denied emotion is destructive. I tell families all the time that crying and slamming doors and cursing God and punching holes in the wall are an utterly appropriate response when the worst thing happens. You need to worry about the people who do not weep or speak.

Back when Cal was diagnosed, there was no treatment options. It was - in a sense - easier to accept our outcome. The disease had already won. But with an FDA approved treatment, humans have the illusion of control over who lives or dies. Suddenly it feels as if one child’s life is somehow more precious than another’s. This is not true, but in the deranged moments of early grief, this can feel true. It is harder to accept the truth of this disease now that some children get a chance at a miracle while most will not. A father asked me last week, “Why is everyone giving up on my son?” I assured him that was not true, but, I could also tell he didn’t believe me. He could not understand the harm in using gene therapy to try to help. How could the man understand that while his son was still smiling and laughing and blowing me kisses, it was already too late.

Then the father said, “I don’t want to do this.” What he meant was to be the father of a child who is dying.

This was so true and honest, and such an incredibly brave thing to say.

I answered, “Of course you do not want to do it. I am not brave, and somehow I have done this. So I know you can do it as well. I am living and breathing proof that there is a way through this. You are so much braver than I was when my daughter was diagnosed. You are brave enough to call me and ask questions. Your child is so lucky to have you.”

Looking back all these years, it seems to me Dr. Waldman was the bravest person I had ever met.

On that day, Dr. Waldman never took her eyes off of me as I was engulfed in the flames of grief.

I will always be astounded at how she could bear witness to the worst thing happening, and that she had chosen to be here.

Every time I speak to a parent, I try to make them feel as safe and protected as Dr. Waldman made me feel.

Now, when I speak to families, I never take my eyes off them. I ask to meet their child and we spend as much time as they need and want.

And all I need to do is stand in their pain with them and promise them that they will never have to do this on their own.

That is the only thing you have to do when the worst thing happens.

That is what hope means to me.

Dr. Amy Waldman and me with Cal and her own children.