By Joelle Fawcett-Arsenault
As a family, our life revolved around our son, Blake’s, illness. When he had his first seizure lasting 45 minutes (at the age of 5 months), we hoped it was the kind of childhood epilepsy that everyone told us about – the kind their brother, cousin, neighbor, etc. had as a child, but outgrew. Despite this hope, he had more and more seizures and our life became increasingly medicalized. Everything revolved around the constant state of emergency that we would find ourselves in, when life went from ok to chaotic and an ambulance would carry us to weeks in the hospital, never returning home with any concrete answers or effective treatments. Five months after that first seizure, our final attempt at pretending we were a “normal” family, as was encouraged by our doctors, was to go on vacation to BC. Our vacation ended on the second day, with a STARS air ambulance trip back to Calgary. At this point we were advised to just stay close to home. Our world suddenly became very small.
That was until last year, when our son was 3 years old and we were advised that we had been nominated for a wish through the Children’s Wish Foundation. The idea seemed impossible. By this time we had determined our son had Dravet Syndrome – a catastrophic, progressive genetic epilepsy that impacts every area of his life (speech, motor development, sleep, etc). What would Blake like? How could we determine from our mostly non-communicative son, what kind of trip he might like to take or item he might like to have? What if we guessed wrong? What if we went somewhere and it was too much and he had THE seizure that would take him from us? Or, what if we waited too long and he had THE seizure that could take him from us before giving him the chance to have his wish. FEAR kept us from making a decision.
The state of indecision in all areas of our life was killing us. One night I suddenly got clear – we had to create criteria to make decisions. Ours became: Will this bring more JOY into our lives? That made saying ‘yes’ to a wish easy. We just needed a break – a break from the constant doctor’s appointments, admissions, treatment plans, research, testing, therapies – as a family to just BE together. Our experience with the Children’s Wish Foundation was magical from the beginning. From the support we received in selecting and planning the wish, to the way they got to know Blake and his sister and intentionally included things they loved into what they provided to us. Even participating in Exile Island, a major fundraiser, with the team of selfless individuals dedicated to raising money for OUR boy’s wish, left us feeling more supported than we had ever felt. We suddenly felt less alone in the experience of our life. The excitement of the trip helped us through many very rough days, and now, the memories we made and the joy we experienced does the same thing. The first night we arrived, we already began noticing changes in Blake. He became more animated, and he tried desperately to communicate with us every night as we were getting ready for bed, everything he had seen and done, through his signs and gestures. He began feeding himself! He waved and said “hi” for the first time (then over and over again!) to those passing by, as he rode a carousel, run by volunteers at Give Kids the World, round and round as long as his heart desired. He said “blellow” (yellow) looking with wonder at an aquarium of fish! We found out that he LOVES beautiful princesses (even more than his big sister!) and rides. We saw his eyes light up in a way we never had. Every moment, I felt the need to simultaneously burst into tears and grin until my face hurt. None of us had ever experienced that much JOY. And we all remain so grateful for the experience. Yesterday, Blake and I were looking at the memory book I made of his trip. He signed and said “thank you” over and over, as he looked through the pages…..followed by his sign for “more” and “please!” Blake’s wish opened up our (and most importantly, his) world to possibilities. It dissolved our fear and demonstrated to my husband and I the importance of taking (calculated) risks and providing our children with as many experiences as we can. Our daughter often brings up the question of how long it will be before she is old enough for her and I to go back to volunteer for a week at Give Kids the World. It taught us that it is important to say ‘YES’ to life, even if our life often feels crazy, scary, isolated and small.
Since that moment when our world went into a tailspin by Dravet, the one thing that brought us peace, contentment, and JOY was our wish trip. To say we are eternally grateful is an understatement.
Joelle Fawcett-Arsenault is an Edmonton mom to 2 and is blogging about their journey through supporting their son who has a severe form of epilepsy. Read more at dravetmomma.wordpress.com.