We often hear things during our journey in parenting and we shake our heads. Words from people that 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 in a wheel. Running very fast, and the words simply come slipping out of the wheel faster than the mind can even comprehend words like “Life limiting, Life threatening, permanent brain damage, or 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 bare. 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, 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 want to immediately take it all back. Suddenly the words drip out of 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. It’s as if I need to suddenly catch my breath and hope that I don’t pass out from the stress this sentence causes me. In my mind, I start 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 to have a child that could die early. There isn’t a parent in this world that prior to birthing the child, said they would be ok with a child that had serious developmental delays, neurological issues, and difficulty achieving nearly every milestone known to humans. No one WANTS that kind of fight. However, there are many of us in this community that have this fight every single day.
We leave our homes and we pack up our kids bags of emergency medications, shots, Nebulizers, oxygen tanks, vests for lung treatments, catheters for the our trips to the bathroom, and we take our children to their day to day 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 bare the stress and agony of another appointment with more diagnosis and more bad news about the future. Every day we work with them to reach the milestones they can reach. We don’t know what they are, and many of us have no idea how far they will go. Each day we work with them patiently while we help them sit, eat, walk, talk, touch and taste new items, or simply attempt to take them out publicly without massive stares or melt downs. Every day we are their eyes, ears and voices as we advocate for them to reach their maximum potential. We hope and pray that technology will catch up and cure their diseases. But 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 impact 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 that treat them. Many parents know more about their kids diseases and how it impacts their child than the doctors that help them. For all of us, 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 that 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. However, 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.