What is Craniosynostosis?
My son, Chase, has developed facial differences due to a condition called Craniosynostosis. Here is our story of how we have always faced forward!
The day you become a mom is the day your heart forever lives on the outside of your body. The amount of love we feel for our kids leaves us physically aching. We want to give the world to our kids, hope they see the beauty in all its forms and to feel the love our world has to offer. Naturally, we want to protect them at all costs.
There comes a time when we realize that we can not protect them from everything and we certainly can not protect them forever. But when that realization comes so close to the beginning of their lives, your perspective of the world shifts. You begin to mourn the idea of what you thought motherhood would be like and then deal with the guilt of even having those feelings of loss. You realize early on that as a mom you have a superpower you never knew existed. You learn ways to fight for and with your kids on an otherworldly level. And you learn what your new normal is.
Mom, Dad and Chase
Your perception of the world comes from the context in which you've lived your entire life. It is your narrative, how you relate to the world around you, how you compare yourself to others, and how you connect with your surroundings. It is very easy to worry about your child when they don't quite fit into your context of what you have, up until now, thought of as "normal".
When you have a child that is neuroatypical, with perhaps facial differences than the average child, you worry about how they will see themselves in relation to others. What is their context? What do they have to relate to and compare themselves to?
What I have learned and am still learning that it is not that I need to change the way my son sees himself in relation to his peers, but to create change in the way others perceive my child. To shift the way people see him, so they can see him the way I do. My perfect boy.
And when my son feels that people see him the way I see him, I know he'll see himself the way he is meant to.
My son Chase has a history of Craniosynostosis from a defective iL11RA gene. Meaning his soft spots closed prematurely. Unfortunately, even after repeated visits to the doctors, it went undiagnosed until he was just over the age of three. Your soft spots are there to make room for your brain to grow and when they close too soon, it doesn't allow the brain to grow as it should. Because of the early closure of several sutras, it caused raised intracranial pressure.
We first had concerns because we noticed his eyes were falling inward towards his nose and his left eye in particular was shaking - nystagmus. Craniosynostosis is not uncommon and often babies are detected to have the condition within the first 4-6 months of their lives. They have one fairly simple surgery and are well on their way to recovery. Because Chase’s was late presenting it went undiagnosed until some physical signs were present including blindness in his left eye, as well as a history of obstructive breathing which requires nightly CPAP (Continuous Positive Air Pressure). He was eventually seen by a team of surgeons, an opthamologist, neurologist and neurosurgeon. Since 2010 Chase has undergone a total of 10 surgeries.
The gene discovered to have caused Craniosynostosis is a defective iL11RA gene. It is known to cause other problems as well which is now taking Chase on another journey.
Our youngest son Caleb has a mild form of the defective iL11RA gene and our daughter Chloe is a carrier of the same gene.
Although our kids are still young, something we do consider is the future of their possible children, when and if they decide to have children. We will once again be faced with a similar journey.
We are very blessed that Chase is as brave as he has been and that he is here with us today.
He has had a more intense journey than many 11-year-olds but he still has a long road ahead.
They say it takes a village to raise a child, and when your child has special needs, this becomes even more apparent. Throughout all of the struggles and the traumas we have learned to take the good moments, the positive experiences and the joy in life and hold on to them as tight as we can.
Chase has attended Camp Trailblazers twice through the About Face summer program and as a parent, sending your kid to a place that understands the different needs of your child is priceless.
Big Brother Gives Little Brother a Hug Before Heading Off To Camp
It was a place where Chase was amongst chidren who share similar unique life experiences and challenges. It was an opportunity to increase his self esteem and a time for him to realize that he is not alone in the challenges he faces. It was a place to make friends and feel a sense of support and comraderie. To know my kid was safe and whose needs were met in a way that not many other camps could have provided, brought me so much joy. We took that week of camp and we relished in the fact that Chase just got to be a kid like everybody else.
Kids Being Kids
Chase loves reading Wonder, Auggie and Me book set. “I know I’m not an ordinary ten-year-old kid. I mean sure, I do ordinary things. I eat ice cream, I ride my bike, I play ball but i know ordinary kids don’t get stared at wherever they go."
Much like Auggie, Chase has a family who loves him and supports him. And much like Auggie Chase is resilient, fun and insightful. But most of all, Chase is Chase. He's my son whom I adore. All I can ever ask is that the world gives him a chance and gets to know him. It is my hope that people see past his facial differences and look into his eyes. I know they will adore him too.
President & CEO of WP Creations