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When Parents of Kids With Life-Limiting Diseases Hear, ‘Will He Grow Out of It?’

We often hear things during our journey in parenting, and we shake our heads. Words from people who are well-meaning and well-intentioned, and they make us scratch our heads and wonder how they could even think these things. I think of people in their heads forming these words. I imagine a little hamster running fast in a wheel, and the words simply come slipping out of the wheel faster than people’s minds can comprehend words like “life-limiting,” “life-threatening,” “permanent brain damage” and “no cure.”

Within that brain of the well-intentioned friend, family member or stranger is an anxiety that wants to make this situation easier to bear. How could a child so young and so innocent be facing so much? This could not be the possible reality of any family. I imagine that hamster spinning and running faster to make sense of a world that is far too wrong. Then the words come out of their mouths, and I assume after they come out — they immediately want to take it all back. Suddenly the words drip from their lips, and I think maybe they don’t even realize how upsetting it is. “But will your child grow out of it?”

The words fling at me like a punch directly to the throat, and I feel like I can’t breathe. Suddenly it’s as if I need to catch my breath and hope I don’t pass out from the stress this sentence causes me. My mind starts to race, and I think about all the things I could probably explain, the ways I could make it easier for them to understand, and the frustration I am certain they are facing along with the despair that must be in their hearts, too. Of course it’s what we all want, right? No one wants their child to die early. No one wants that kind of fight. However, there are many of us in this community who have this fight every single day.

Katie's son in a hospital bed
Katie’s son in a hospital bed

We leave our homes, packing up our kids’ bags of emergency medications, shots, Nebulizers, oxygen tanks, vests for lung treatments and catheters for the our trips to the bathroom. We take our children to their daily activities. Our bags are heavier, our loads are greater than many parents, but our children are just children. It doesn’t matter to them that they may or may not see adulthood. Most can’t even understand the magnitude of their diseases. So we as their parents carry the heavy load on our hearts, minds and shoulders. We bear the stress and agony of another appointment with more diagnoses and more bad news about the future. Every day we work with them to reach the milestones they can reach. Each day we work with them patiently while we help them sit, eat, walk, talk, touch and taste new items.

We hope and pray that technology will catch up and cure their diseases. But I believe we can all tell you one thing:

No, he will not grow out of it. Our children have diseases that are not curable. They have pre-wired brains that may not work the same as yours or mine. They have faced surgeries and illnesses that have completely altered their brains and bodies. They carry scars and have holes in places many people would never even consider them having. Many of our children are missing organs, have failing organs, have catheters to use the restroom, may need transplants, have their immune systems attacking their organs or have foreign bodies growing and waging wars within their tiny bodies.

Unfortunately for pediatric diseases, there is not a lot of money invested to help these children. They have diseases that are not always profitable to research because they have an impact on so few. Many of us live in unchartered waters where our kids are the first discovered to have a genetic mutation. There is not a lot known yet in the genetic world, and for many of us, our kids are not only the first patient ever diagnosed, they are often the first patient ever seen by the doctors who treat them. Many parents know more about their kids’ diseases and how it impacts their child than the doctors helping them. We are told, “There is no crystal ball” or we hear “We have no prognosis for your child.”

This most certainly doesn’t mean we give up and fall. We as parents keep on fighting, working on advocating for services, researching new treatment methods and digging through journals, online boards and around every corner for options for our kids. We will never give up on them. We will never consider their diseases a burden or their lives worth less than that of a child born healthy. In fact, we rage a battle against their diseases daily as we learn how to keep them safe and teach them the skills we hope will enable them to care for their disease as adults. We pray to God that science will find cures for our kids. In our hearts, we will never accept that this could be the end or the final result for our child.

When you ask us, “Will he grow out of it?” the short answer is no. The long answer is we will never stop fighting, looking and reaching for a cure. Even if it’s next to impossible, highly improbable and more than likely a failing venture, we will never stop fighting for our kids. They may not grow out of it, but they will become the best people they can be because we as their parent advocates will never give up on them.

A framed photo of Katie's son with paint on his face and hands
A framed photo of Katie’s son with paint on his face and hands

A version of this post originally appeared on Without a Crystal Ball. Follow this journey on Von’s Super Hero Facebook page as well.