An important message of thanks & fortitude

I would like to take this opportunity to thank everybody, family and friends, supporters on the blog, for your prayers and spiritual messages of support for our precious Reuben. Prayers and thoughts that thread through your churches (and the Vatican), temples, mosques, prayer and spiritual groups. I feel we are on the cusp of something huge, the H word which spins in and out of our heads and minds, furtively dancing in the shadows, preparing for its debut. The precipice of H is opening up from its spiritual heights to a physical manifestation.

We so often hear, Reuben, like other kids with special needs, is a fighter. What so many of you quoted in the earliest days, “One of the hidden features of CHARGE syndrome is the determination and strong character these children display” at a time when we were barely able to keep our heads above water, let alone tread it. I could smell fear in your words of support at the time and I understood that. We were barely able to breathe as the torrent of medical issues overwhelmed us like a tsumani. We would stand up to each new day to be faced with another near drowning. We searched for life saving buoys and they came. We were able to hold our heads above water, we truly believe, through the support received first by having Jason’s parents, Rita and Tony and then my parents, Mary and Joseph, and shortly after, our sisters visits. Support too from family here, in particular my cousin Barrie through his many visits to Children's. In addition, messages of support came flooding in from around the World, from friends old and new, from the CHARGE Syndrome Listserv, from other parents of children with special needs. I believe we have met, virtually or otherwise, more new people in the last 5 months who have shaped our lives so greatly, than we have met in all our living years to have preceded these months.

I want to return to that word, fortitude and the concept of being a fighter. Perhaps it is easy to think or say, “Well, he’s a fighter because he knows no better” as if Reuben has no choice. I strongly disagree with this philosophy. I believe Reuben like the many kids who’ve warmed our lives, had a choice. He had a choice to be grouchy and miserable and shun warmth and affection, because affection and touch at times has to be neutral when you’re continually being poked by a nurse or Dr for a blood draw, or a new IV site (I will never forget the pain at watching Reuben being poked about 10 times without success, including in his head before they resorted to a more permanent IV in his head with the resultant NICU shaven head and the pain he endured, the pain in Jason’s face as he held him afterwards, the pain in the hearts of Mum, Jason and I shortly afterwards having witnessed this). Yet he chose instead to amuse and amaze. One of the greatest gifts a child can possess is curiousity for life, and Reuben has it in abundance. Despite such cruel sensory impairment, he absorbs every new experience, he relishes every new texture, every new colour, a new toy that’s arrived in the post with such zeal and excitement that we are overwhelmed with pride and love for him! He loves when we sing to him, his eyes dancing from our eyes to our lips, the early signs of lipreading so gladly present. We love our boy beyond measure, he is truly incredible.

Please keep the messages of support, the cards, calls, texts, blog comments and emails coming. We may not be able to get back to you right away, but I hope you know that your words mean the world to us. Your support has meant we’ve been able to pay it forward to Reuben and for his improving health and developing personality, we have so many to thank.