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When Your Child With a Rare Disease Doesn’t Feel Brave


Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should!

Courage shows up in many ways all around you. Courage is standing up for a friend, helping someone in need or sticking with something that is hard for you to do. They say that having courage makes you a better person, and courage is one of the most important faculties you can develop.  

But what if being brave and courageous was the only choice you had to make?

As a parent of two boys with Jansen’s metaphyseal chondrodysplasia, an ultra-rare skeletal disease that affects less than 30 people worldwide, I am pained to see courage every day. “Pained” you ask? Yes. Pained. Gutted. Destroyed. Every time I hear myself or someone else tell my boys, “Be brave!” or “Be strong!” I die a thousand times inside.

I have always dealt with pain with a sense of surreal stoicism. It has served me well during numerous surgeries and agonizing recoveries. In the face of open laughter, stares and gawks, I have developed a coat of stoic armor that allows me to focus on only sunshine and lollipops, kind people and puppy dogs.

So when I was confronted by my plucky 9-year-old who screamed, “I don’t want to be brave!” as he writhed in a hospital bed, amidst a cacophony of beeping wires and tormenting arms holding him down, my world of valor and fortitude, so painfully built, came crushing down.

And after bloody sheets were changed, wires re-plugged, tears wiped and the last unfortunate nurse crept out of our room squeezing my arm with the last vestige of kindness, I sunk into the armchair watching my little boy’s body heave and whimper in fitful sleep.

Two children hugging each other. One sits in a wheelchair

I saw the ugly side of rare disease. The side that laughs baring all teeth in the face of courage. In sheer exhaustion from repeated surgical procedures, pokes, popped veins, failed IV attempts, courage retreats behind sunken eyes wrung of every tear, pile-high unwashed laundry and lingered menacingly in the rank smell of stale vomit.

The next morning, my heart sunk even further. As I carefully cleaned up trails of dried blood from wounds on my little boy and glanced furtively over the sprawling crimson bruises from arms that were meant “to make things better,” his eyes reached for me. Ever so softly, between parched lips, he spoke: “I’m sorry I could not be brave.”

I froze. There were lots of quotes about overcoming fear and being brave floating through my mind, but I couldn’t find one that would take my baby boy’s pain away. Not one that could make sense of the pain he felt. Not one that promised him that tomorrow would be better.

For the record, I have no problem with clichés or platitudes — they exist because there is usually some truth to them. But they were not needed here. Not at this moment. The most profound thing I have learned about rare diseases is the fear is real. There is no escaping it. It is an enemy he will battle till the end.

Courage is a highly-prized virtue, and many famous and respected people have spoken or written about it over the years. We probably all have an idea of what we mean by courage, or bravery as it is sometimes known. From the religious teachings to fairy tales; ancient myths to Hollywood movies, our culture is rich with exemplary tales of bravery for the greater good. From the cowardly lion in “The Wizard of Oz” who finds the courage to face the witch, to David battling Goliath in the Bible, to “Star Wars” and “Harry Potter,” children are raised on a diet of heroic and inspirational tales. But when we ask little kids to fight battles that are grossly unfair, to wrestle with emotions too big to comprehend and to wage war against systems that keep 7,000 rare diseases searching for cures, “Be brave,” sounds trite — a hazy castle in a fading photograph that time forgot. When all you can feel is pain, being brave is overwhelming.

We are afraid of things that threaten our sense of “normal,” and our instinctive reaction is to dress difficulty in words of valor — “the Warrior,” “the Fighter,” “the Brave.” I have longed, as all mothers do, to roll back the clock and take all the sadness away. But when I failed at that, I found myself using these words to describe my boys as I try to romanticize their struggles, and make sense of that which is often beyond understanding. 

But I am learning that while my child’s emotional response to pain may not always be rational, it is indeed real. The kicking and the screaming are his “fight” when “flight” is not an option. It is almost certainly linked to unhappy memories and similar past experiences of agony.

I am beginning to learn that true bravery is to be authentic. It is my son openly sharing his feelings about a particularly horrible situation he nor I can do anything to make better, and not being feeling shame or embarrassed or judged as “weak’ for it. It is his ability to say, “I don’t want to be brave” and for me to take him in my arms and whisper softly, “I love you.”

To understand is courage, to endure is courage, and to sit and love in the absolute disheveled brokenness of “you don’t got this” is courage. Imagine if we could teach ordinary kids facing extraordinary battles that vulnerability is just as heroic as courage, and that truly ordinary emotions are not a sign of weakness, but rather an opportunity to connect, nurture and grow. So in that moment when your child’s world is a tumultuous storm, you sit with his pain, listen to his pain and respect it, and in time he will move through it.