Every night around 10 p.m., I sneak into Elody’s bedroom. I do all those cute normal parent things... like wonder what she's dreaming of, and take a mental picture of her perfectly curled eyelashes against her cheek. But I also check to make sure she's breathing. I count her respirations. I place my hand over her wrist to check her pulse, and I kiss her forehead. Not to say goodnight, but to make sure she doesn't have a fever. This has become the paranoid, terrified routine of a mother who cannot sleep without the comfort of knowing her baby is alive in the next room.
This is the routine of a parent who has faced her child's mortality in one of the most terrifying ways known to man.
Until April of 2014, childhood cancer never entered my mind as a concrete fact of life. It was something I saw on St. Jude's commercials. Something I turned away from because it could "never happen to *my* kids." I mean... it's so rare. Isn't it?
I can tell you the exact moment that changed. It wasn't the night we got admitted to the hospital. It wasn't even when the doctor sat down and said "this *might* be leukemia." I was still in my blissfully ignorant bubble that believed leukemia was the longest long shot of the possibilities. But my world changed before I actually heard the words "it's leukemia." Our family was thrown into the abyss of childhood cancer on a beautiful sunny day. We were laughing, playing, and watching TV... when five doctors walked through the hospital room door. It was in that moment. The moment the doctor from the night before looked into my eyes and I knew.
Since that day I have learned so much. About resilience, bravery, kindness, heartache, and what love really means. I've also written a list of a few other things I've learned which I would like to share with you:
- The force needed to remove hair that's falling out without hurting a two year old
- How to catch vomit on a moment's notice
- How to get a child to eat when she has open sores in her mouth
- How to give IV chemo and antibiotics, and de-access a port
- What pants stay up when her legs got so thin that leggings fit more like baggy sweatpants
- How to get the blood out of a stuffed animal's fur
And these are just a couple things I’ve learned during her treatment. Countless other unimaginable experiences have shaped who I am, who she is, and who we are as a family.
We are a cancer family. We always will be. We view life differently, but in some ways that is an enormous blessing.
We don't take any moment for granted, and I respect my four year old more than any adult I know.
These kids are incredibly resilient. But they're also just kids. They want to play, they cry when they're hurt. They miss out on a big part of their childhoods because they are too sick. They deserve more funding than they get, and people need to stop looking away.
My daughter beat cancer. But there's still a chance I will outlive her thanks to long-term side effects of chemo and secondary cancers caused by chemo. That's not OK.
Please be an advocate for the kids who have no voice. They're crying out to you. Listen.