Today is not normal.

Today is not normal.

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.

 

 

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10 Responses to “Today is not normal.”

  1. Sometimes it is hard to understand a world in which one sweet child can face so many terrifying obstacles. One thing is clear, though: she is as lucky to have you as you are to have her. Praying for a successful surgery, quick recovery, and decades of good health following.

  2. Eve IS amazing, and so are you!! All of our thoughts and prayers are with you. Your courage, strength, and leadership are an inspiration to us all.

  3. Linda Halvorson 07. Feb, 2013 at 11:39 am

    You folks are amazing as is your beautiful little girl. Friend of Glenn’s and pray for the continued success of your journey

  4. Wonderful blog post! Thank you. Hope Eve recovers quickly and they get every last bit of tumor! You are in my prayers.

  5. Karen V. Paurus 07. Feb, 2013 at 12:46 pm

    Annamarie and Paul,

    I know I keep saying it, but I’m here praying for you and Eve and hoping everything turns out okay. It’s such a helpless feeling to see what’s happening in your lives, so many miles away, and not know what to do. I appreciate you keeping us all in the loop and sharing this touching story with us today. I commend you for your strength, love and patience. You’ve been though so so much….

    Let’s work on that massage plan when you’re back in town, okay? xoxoxoxox

    p.s. Happy Anniversary, Happy Birthday, Etc. ;-)

  6. Excellent article, so true and brilliantly written!

  7. So well written and so true. I have always taken exception when people compare the awareness of CHD’s to Breast Cancer because my son is 1in100 and my sister has the rarest and deadliest form of breast cancer known to us. A form that is often misdiagnosed, just like CHD’s. They both deserve as much awareness and funding as they can get.

    In addition, my daughter is 1 in 10,000, facing another condition that also isn’t screened for, has no research or funding and drastically lacks in treatment options beyond multiple surgeries.

    I hope your daughter wakes up soon with a bright new future!

  8. I can’t even begin to imagine everything your family has been through. I’ll be thinking of your strong little girl tonight and I hope so much that everything goes okay.

  9. e-Patient Dave 07. Feb, 2013 at 8:54 pm

    Wow. Soooo moving, so heartfelt…. I’m in tears.

    And I’m in Minneapolis, while you’re far away.

    What a wonderfully written expression. You’re becoming a more and more powerful voice.

    Our best for Eve and all of you.

  10. Brenda Yost Fjeld 08. Feb, 2013 at 7:46 am

    I pray for God’s loving arms to wrap around you all as Eve’s healing journey begins. I pray for the docotors and all the staff to be better than their best today as the work. Anna, I pray for strength for you and your husband. I didn’t know the journey that you’ve been on with Eve, but God has a special place in his heart for mom’s and dad’s that go through so much with their children! All my best to your family.