Monday, October 1, 2007

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.


mog-aj said...

Of course he is strong and shows such 'fortitude', he has the strongest parents and heritage. There are so many who could and would not survive what you two/three have been through and yet you go on to inspire others. For all his problems and issues he is so obviously a bright and gorgeous little redhead (sorry Jason but its true!)so is bound to have a strong fighting temperament.
Keep fighting and smiling.


yp said...

Reuben is not the only one in your family with the blessings of fortitude and gratitude - your entire family - the nucleus and the extended - have it in spades. If ever there was a demonstration of how blessing is detemined by circumstance, solutions are rarely as we are able to imagine them and love conquers truly all - then you would be it. I celebrate and am continually inspired by your profound courage to be present through this process and to surrender completely to Reuben. It has been a tremendous gift to walk with you some of the way - part wounded healer, part eager to see the epiphany where the unexpected transforms from feaful to joyous. I celebrate with you this great love borne of conditions we would never ask for yet we embrace and gratefully steward. Great love to you all - the greatest gift to me are the photos of Reuben's mesmerizing deep eyes and gorgeous face-

ellen charge said...

i agree with yuka u all r an amazing fam and everyone that nos u r truly blessed many hugs and kisses ellen

Kristi said...

How about a message of thanks to YOU?
You know how addicted I am to your blog... and it was when I read this post (which was on Sunday with kids literally on me, so I couldn't post) that I realized why...
By sharing your story, you have in many ways told part of our family's story (and others, I'm sure)... and I think that reading it has been healing for me on many levels. Sometimes, in the thick of the day-to-day, I don't always give myself a chance to get things out... to really feel where we've been with Gracie. Your blog has allowed me to heal old wounds by seeing how far we've come. I often read your posts nodding my head & with tears in my eyes (lately, tears of absolute joy, which are my favorite!) because I re-live our experiences and feel so profoundly connected to you by the way you describe your feelings as you travel on this journey with Reuben. I think by reconnecting to all of those emotions and experiences with the benefit of being on the other side of it has helped me tremendously. And for that, I am forever indebted to you.
This isn't my blog (which... if I can find time, I really need to do one!) so I will stop now! I just want you to know that it has been a true honor and blessing to be so openly invited into your lives.
I truly believe that there were many reasons we met at the elevators that day...
Thank you.