Living with a Tiny Light.
Hearing the news for the first time, that your son or daughter has something “wrong” with them is life changing for families of children with disabilities. Every dream, hope and vision you had for them suddenly changes to fear, anxiety and unfailing worry. You wonder what the future holds for them, if they will suffer and how, as a family unit, you will cope.
It took us a long time to understand how to move forward once we learned of our son’s diagnosis. In December of 2009 (Ben was sixteen months old) we were told of his condition while staying at The Stollery Children’s Hospital for nutrition related concerns. Ponti-Cerebellar Hypoplasia Type 3, his diagnosis, is so rare that he is only one of five confirmed cases. In the entire world. You have a greater chance of winning the lottery than having a child like Ben (approximately six times over!). To us, Ben’s diagnosis was not overly surprising but with such a small number of people having it, the information on PCH is nearly non-existent causing serious frustration. The biggest question was not how did this happen but instead, where do we go from here?
First, we grieved. We considered everything that Benjamin would not do (he experiences major global delay). He will never play football with his daddy, he will never get married, he will never have kids of his own… the list goes on.
And we cried and screamed and yelled and… we blamed.
But then, with time, we got over it; our family has not looked back since. Once we accepted all that he wouldn’t be able to do, we were able to focus more clearly on what he could do and what he will do.
For example, Ben CAN take some foods orally, push his arms out of his sleeves when getting dressed, help move his arms out of the straps from his car-seat, say Mom, Dad and no, he can identify when he is hungry, show when he’s happy and when he’s not, he can anticipate, give a high-five, put his head under the shower stream, get himself out of his chair, push a ball, commando crawl, and recognize his favorite things and people. To name just a few. He continues to fight the barriers working against him; he is such an inspiration to all of us.
I admit that some days are extremely hard and I need additional support; as much as I consider our family normal, there are many days that I need to remind myself that our living situation is not typical. That Ben does require “extra” care. And that I (we) need to take the time to be the best parents and individuals we can be, not just for Ben, but for all our children. As with all kids, things that worked yesterday may not work tomorrow and so we are constantly adjusting.
The outlook for Ben was far from positive but he has managed to overcome every obstacle put in his way and has proven that with a little determination, you can beat the odds set against you. Today, we have a healthy, vibrant, and joyful little boy who brightens our lives and infects everyone he meets with his spirited laugh.
Benjamin and children like him (or completely different, but equally wonderful) are Tiny Lights that show society just how perfect “wrong” can be. With the continuous push for inclusion, understanding and tolerance, we are paving the way for a brighter future for our children. The Tiny Light Foundation provides families with the opportunity share the best parts of our world and we are extremely grateful they exist; capturing our beautiful children and presenting their stories to the world.
Images Captured by Melissa DePape Photography