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Chiari Malformation Won't Stop This Girl
Chiari can't stop this girl

This girl. She's so full of love and passion. She leaves things a little brighter wherever she goes.  I love seeing her passion come out on the soccer field. But each time she's on the soccer field, playing a game she loves, I’m reminded of Lucy's limitations as well. You see, sweet Lucy was diagnosed, around the age of two, with a Chiari malformation. Chiari is a type of brain malformation that can cause a range of symptoms from pain and headaches to profound disability. We are fortunate in that Lucy's symptoms are mild. She doesn't experience developmental delays or other severe symptoms. She does, however, experience headaches, numbness in her limbs, balance problems, and battles pain most every day of her life. I'm not certain that this actually constitutes 'mild' to a mom because the pain she faces is heartbreaking.  The pain comes in the form of short, excruciating headaches and unexplained joint pain. Joint pain that occurs nearly every single time she participates in normal childhood physical activities. After running the soccer field for an hour, she comes home in pain. Some days it’s far worse than others, but after nearly every practice and game, she is in pain.  After a day at Disney World, she cries herself to sleep because her legs hurt so badly.  Seeing her in pain is excruciating to watch.  It’s not something you’re ever prepared for as a parent, no matter how many times it happens.

September was Chiari Malformation awareness month and it has taken me until the first day of October to put into words what I wanted to about Chiari. Why was it so hard to talk about? Because I hate watching my child suffer. I hate knowing there's nothing I can do to take her pain away.  Chairi makes me feel inadequate and ineffective as her protector-the one who’s supposed to take away all of her pain. All I can do is squeeze my babies head while her headaches are happening, because this is what she asks of me. All I can do is offer Tylenol and a massage while her joints are aching, all to no avail.

The silver lining here comes in the fact that Lucy doesn't let the Chiari affect her life, even in the smallest of ways. She gives 110% all of the time, and despite the inevitable pain, she still dives head first into everything that has the potential to cause her pain. Not only does she participate, but she pours her heart and soul into everything she does. If the world had a few more Lucys in it, it would be a much more beautiful place. She's not controlled by her affliction, she thrives in the face of adversity and spreads her joy to all she meets.

Chiari won't stop this girl

October 03, 2016 by Bonnie DiCocco


Jessica Bampton

Jessica Bampton said:

This piece is beautifully written Bonnie. God bless you little Lucy. I pray a cure finds its way into her big life!

Michelle Lovely

Michelle Lovely said:

As a fellow Chiari Warror I couldn’t have said it better myself. Though I was blessed to be asymptomatic until my mid-20s I understand the daily struggle of dealing with uncontrolled pain and ordinary balance issues. Keep Smiling Lucy!

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