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How We Remember the Day of Our Son's Leukemia Diagnosis

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November 3. Of many significant days in our lives, November 3 is like none other. It brings back a rush of memories…

I’d just left the children’s hospital after our son Gabriel — then 3 years old — had blood tests done. We were heading to a toy store because he’d done a good job. We were still in the car when my phone rang, and in all my days I will never forget the sound of the words I heard: “If you’re driving, pull over.”

I did as I was told.

“We need more tests to confirm, but they are 99 percent sure Gabriel has leukemia.”

I entered a time warp. It’s surprising; for me, it was just as it is often depicted in movies. It happened in an instant. The sun was still shining — but differently, not as brightly. The noise around me faded away. The world around me sounded like things do when you are swimming underwater. I heard some words. I heard them; I couldn’t comprehend them. They were just random words:

“Hopefully… factors… are in his favor…”
“Long battle…”
“Many hospitalizations…”
“Three years…”
“Seventy to 90 percent chance…”
“Hopeful he will live a long life…”
“Don’t stop home long…”
“Need you to return to the hospital right now…”

Breathe. I literally had to remind myself to breathe. Yes, I was a mother, but in a heartbeat I felt I truly, instantly understood the full depths of motherhood.

I would have to lead this child in his battle to live. To live. My child. My baby. My 3-year-old son. To live. To this day, when I think about it, I still reflexively shake my head and cannot believe it.

Breathe. I had to, for him. I had to, for my daughter I was carrying at the time — about six and a half months along in the pregnancy. I had to keep going forward. For him. For her.

Less than 24 hours before receiving this call I’d had an ultrasound, which confirmed all was well with our little girl. I’d had three miscarriages after Gabriel was born. Two of the little ones —each a boy — were pretty far along. Our hearts still broke, but finally after the ultrasound we felt some joy, and we thought we could breathe a bit more deeply. Literally minutes after I came out of that ultrasound room, I received a call from Gabriel’s nursery school saying he didn’t look well. Which led me to take him to the doctor. Which led to the blood test. Which led to — this.

I remember the world had never felt so cruel.

“Breathe,” I told myself. I wanted to die. I couldn’t. There was no choice. I forced myself — inhale, exhale, inhale, exhale.

I turned and looked in the back seat. There was Gabriel, clapping to his music and laughing. As if scripted, he smiled and said, “Hi, Mama,” and he waved. That smile. His voice. I still remember that moment, as if it happened in slow motion. My heart shattered, because this innocent child couldn’t have known he was about to enter the fight of his life. He couldn’t know what he was going to have to go through.

I can relive every moment of that day, down to the minute. Every single second.

Once you hear those words, I don’t believe you can ever be the same person again. You may never really feel understood. You can never go back to who you were, even years later, even after some people might think you “should.” How could you possibly, once you have discussed the statistical probabilities of your child living or dying with a room full of people you just met? When you are supposed to protect this child, but instead are signing papers authorizing things you would have never imagined being done to him? When you’ve pinned your child down on a table? When every time your child is pale, or tired, or you see a bruise, you fear and are automatically preparing for the worst?

Yet, there are some amazing things you can learn about life. And, for me, what matters in life became extremely clear. Almost frighteningly so. It may sound cliché, but I’ve found it’s very true — there is “what’s important” and there is “the rest.”

I have felt gratitude in a way I never understood before — gratitude that this child was gifted to us, gratitude that he still has the chance to live his life.

I’ve found my faith was strengthened, and I look for and am thankful for His mercies. Had I received this news the week before, I might have been desperately worrying about both of our children. The timing — which had felt like a mean joke — is now something I give thanks for. Finding out our daughter would be OK minutes before receiving the call let us focus on what we needed to do for Gabriel. (This lesson was taught to me again a few years later. When Gabriel finished treatment, we thought we could breathe easier. Two months later, our 2-year-old little girl would be diagnosed with a rare neurological disorder. It might have been easy to lose faith or to be angry. I chose to be thankful for the mercies that allowed, this time, Gabriel to be finished with his treatment so we could now focus on my daughter’s.)

So, how do we remember November 3? With gratitude. We refuse to let darkness and sadness prevail when there is so much light and love and joy. We have much to be thankful for, and we want to share that with the world.

At Christmas time, we like to be “secret Santa” — quietly performing random acts of Christmas kindness. The sole reason I share this is because it’s one of Gabriel’s absolute favorite things to do. Last fall, one night at bedtime, we were talking about his finishing leukemia treatments. We talked about the day we found out he had leukemia and how it was a very sad and dark day. We talked about how we are happy now because he is doing well. As we talked about his diagnosis day, he said, “Maybe we could do happy things for people like we do at Christmas.” And in that moment, “Gabriel’s Day of Kindness” was born. On November 3, 2015, the third anniversary of Gabriel’s diagnosis, more than 650 acts of kindness were performed in Gabriel’s honor by friends and strangers in each of the 50 states and in 56 countries around the world.

To be sure, there are still difficult moments on that day: seeing him standing outside room 632 during our visit to Boston Children’s Hospital as a strong and happy 6-year-old, when he was wheeled into it on that day three years before; watching for that time on the clock when I received that fateful phone call from his doctor; the list goes on. But Gabriel’s Day of Kindness was a day filled with light and love and happiness. It was filled with doing good deeds, filling the world with joy, and helping others in gratitude and thanksgiving for the blessings and the good in our life. It was a celebration.

This year, Gabriel has decided to have Gabriel’s Day of Kindness again. You can feel free to visit Gabriel’s Day of Kindness on Facebook, where you can learn more. Please join us on November 3 by performing an act of kindness. Hold a door open. Smile. Buy a cup of coffee. Pay a visit to someone who is lonely. Make a donation. Call someone you haven’t spoken with. It doesn’t matter — there is no act too large or small. If you can share it with him, that’s wonderful, but you don’t have to. Whatever you are moved to do in your heart, we thank you for doing it, for helping celebrate Gabriel’s life, and for helping him change his dark day into a light day.

Image via Contributor.

Follow this journey on the Gabriel’s Day of Kindness Facebook page.

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The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here.

Originally published: November 3, 2016
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