February 7, 2013
Today should have been a celebration of my husband’s birthday.
Today should have been a day to rally around Congenital Heart Awareness Week.
Today should have been the start of our wedding reunion weekend in California.
Today should have been a day to finish up some work, get the kids to school, face the Minnesota winter.
But that’s not today.
Today our 4-year-old daughter Eve, is having neurosurgery – 1500 miles from home – to remove a brain tumor. Nothing about today is normal.
I do not want to know what a cranial resection entails, no more than I wanted to know what a heart ablation or mitral valve prolapse entailed 4 years ago.
I do not want to understand that my little girl will be awakened mid-surgery, while her skull is still open, to make sure her limbs can move.
I do not want to know her fear and confusion. I do not want her to be in pain.
I do not want to know that this sweet child, who has not been on this planet even 50 months, has had two heart surgeries and a brain surgery.
I do not want to know. But I must know.
That is our job, as her parents and protectors. To be smart and strong. To understand what we can, and question what we don’t. No stone can be left unturned.
I have no idea how such misfortune could befall one small girl. But I do know her scars – on her chest, and now on her sweet head – will not define her. They are part of her journey now – but her life will have meaning and beauty and power not because of the scars, but in spite of them. Yes, I hope that somehow these new challenges will make a difference in other lives, as I know her heart has. That is the only way to see around the randomness of it all.
Until today, we were 1in100. Now we are also 1in1000. Childhood brain tumors affect 4,200 kids in the U.S. each year. Almost the same number of infants – less than one year old – die each year in the U.S. from congenital heart disease. Comparing statistics is one thing. Comparing merit is quite another.
So, in honor of Eve, this is my small contribution to CHD Awareness Week: to NEVER again compare funding dollars or research numbers between horrific pediatric diseases. I don’t care how common or downright rare the disease is. If it’s your child, there is but one answer: make it go away.
Just because pediatric heart disease is more prevalent than pediatric cancer does not make it more important. Comparing research methodologies or means for two wildly different diseases is like comparing a paddleboat to a jetski.
Awareness is nothing without data. Data is nothing without people. People are nothing without collaboration. Collaboration is what makes the information meaningful enough to do something with it. I don’t care if you are a parent, a physician, a researcher or a technician – no one wants to feel like they are bringing a toothpick to a gunfight. Listen to each other. Learn from each other. Share information that can improve chances.
No one wants children to have their chests or skulls cut open to survive. Even the doctors that do it don’t want to do it. They just have to do it.
Until we can prevent these things from happening in the first place, today we have early detection, access to effective treatment, meaningful data, constantly improving technologies and collaboration.
Today is not normal. Today my daughter becomes both a heart survivor and a brain tumor survivor. And she is amazing.