BY JERICHO ROGERS

It may not be your fault, but it is your responsibility. These words resonate with me as a parent whose fourth child was diagnosed with a complicated genetic disorder shortly after birth. A year later, I could have never imagined the challenges we have faced or the amount of fear, faith, and love that we have experienced since his birth. The journey to a diagnosis and the decisions and changes that followed has demanded radical acceptance from us as a family and as parents. Our reality is scary and our worry about the future is endless.

As a parent, watching our son struggle and not being able to do anything, having to accept that some questions cannot be answered, and some medical conditions cannot be cured, has made me appreciate the simplest things. Having a healthy child is so often taken for granted. And this week, a specific thought on that topic has really been on my mind.

It’s very common to hear parents complain or vent about their children and various milestone challenges that parents naturally cope with. For example, having to chase them around when they learn to walk/run; or having to clean up their messes when they’ve gotten into their toys or after they’re done eating; or potty-training troubles; or maybe the toddler screams, makes a lot of noise, or protests at parents instructions. Really, the list of such scenarios is endless, and often these situations are painted through the lens of a parent “having” to deal with those things in response to their children.

But when your child cannot do any of the “typical” things, the lens changes.  It could be interpreted as though those other parents “get” to do those things with/for their kids. At those times, you want to ask  – if your child could not walk, would you still wish they’d slow down? If your child could not communicate with their voice, would you still complain of the noise? If your child could not learn to feed themselves with utensils or eat solid foods, would you still complain of the messes they made learning to eat? The things that exhaust most parents are sometimes the same things that parents of a child who has a medical condition that limits/prevents them from those experiences, dream of.

I would never wish another parent to have to experience the grief or feelings that I do because of my son’s limitations. And that’s where it’s hard. The disability, diagnosis, disorder, condition, whatever you want to call it, is not ours. It is our child’s. And though it is not our fault that they have that experience, it is our responsibility to hold them through it. I always looked up to the parents of children who have medical complications. They are true heroes. They fight battles daily that many will never have to worry about. They sacrifice more than many parents will ever have to. And they love more deeply than many will get to love in their lifetime.  I am so humbled to be on this journey.

My husband and I both work full time. Our lives have been changed beyond anything we could have imagined in the time since having Yojiro. My wish in sharing any part of our story and experiences, is to connect with other families who are going through anything similar. I know that for myself, it can be very isolating to face such unique challenges that we have found ourselves working through since having Yojiro.

About Jericho

My husband and I have four children and live in Kaua’i, Hi. Our youngest son, Yojiro, was diagnosed with a rare genetic disorder called “KCNQ2” when he was 8 months old. The road to diagnosis was long. When he was born, we knew that something didn’t seem “normal”. Although his official diagnosis did not come along for about 8 months, he was having seizures shortly after birth, and he showed early signs of developmental delays and other complications. The disorder he has is a developmental and epileptic encephalopathy. We’ve come to learn that “milestones” look more like “inchstones”, and everyone is greatly celebrated in our home. I never thought that Yojiro would smile at us or be able to recognize me. He is now a little over one and he smiles all the time. His older brother and sisters love him so much and he gets excited by their presence and voices. He loves the sound of the ocean and being in the water.