Thursday, December 23, 2010

Our link

I was upstairs in the hospital and saw a shirt decorated by a child. It said: “We are all connected by wires. Don’t disable mine.”

It made me think of the link I have to all of you, spread out across the world like Christmas cards on a string, people I never would have known if it weren’t for the blogosphere.

And it got me thinking about how much strength I’ve taken from our online community. When Ben had his surgeries in April, Elizabeth lit a candle for him in Los Angeles. I’d come home at night and find messages from BLOOM readers near and far who were rallying for him and us. Tekeal from Switzerland wrote: “Have been thinking of you these past days... particularly when walking along the river and feeling its healing power and watching the foliage burst with new life – sending it your way.” Stacey from Kitchener, Ont. mailed me copies of Signing Time videos she thought Ben would enjoy. Ellen from Connecticut sent tips on surviving body casts and managing pain. Matt from Toronto shared his experience with surgery and rehab. Many of you prayed for Ben and virtually ‘held’ our hands – too many to name.

Being able to effortlessly tap into your intimate understanding of disability and your support and kindness is a gift that I treasure. Happy holidays to you all and many blessings in 2011!


Right back at you, Louise -- and special love and thanks and all the mushy stuff to your darling Ben.

I think that I can, just this once, speak for all of us as I say, "We love you, Louise!!!" After Alexandra died in August of 2009 from a secend bout with Hodgkin's disease, I wrote her eulogy and vowed that "my writing days" were over. But, then, something unexpected happened, "My heart and mind wouldn't let me quit; I needed to fight back for myself, but most importantly, "I needed to fight back for Alex!"

Hence, I returned to Holland Bloorview, at the age of 31, to seek the assistance of my orthotist, John Kooy, a man who has always looked upon me, and other clients, as we have forever wished: For, I am simply, first and formost, "a person", who happens to have a disability, and not a disabiled person. Here in this place, in the Orthotics Department of Holland Bloorview, John shared his lament and compassion about the limitations of constructing AFO's and artifical limbs for children and adults with disabilities. Although neither of us would achieve the impossible on this day, we were given a gift that can never be ignored or forgotten, as we realized burdens, but also recognized and rejoiced in our common humanity. For instance, in a letter I wrote for John and his wife, during the Christmas season of that year (Dec. 2009), an insert reads:

Moreover, this unwavering commitment and continual sacrifice, not only to the bettering of my life, but also to the fulfillment of a life well lived, has always extended far beyond the office to resonate in your home. For instance, no less than four years ago, just before soaking the casting to mold my legs for a new set of splints, I asked, “John, would you like to remove your wedding band?” Looking up, only for a moment and smiling with the utmost love and devotion, you said, “It’s stuck there”, and never got it dirty. I will forever carry this wonderful memory, and now share it with the both of you, as I secretly wear my braces for one reason, and one reason only: To one day, hopefully, allow my crutches to fall to the floor, while ever so gently placing my hands into the palms of the woman I love. For, I wish to live my dream of “earning a job that enables me to everyday give the very best of myself by assisting those who need my help; marrying a woman whom I will wholeheartedly adore until the end of time; and having a few kids, which we equally cherish, more than the air we breathe, who make a lot of noise during Saturday morning cartoons.”

Afterwords, in the New Year that followed, John more than graciously thanked me for my words, as he introduced me to Bloom and asked, "Have you met Louise?

Today, John and I are not only working together to try and prepare me for surgery, but I was also able to put my pain aside to help a remarkable Mom and and an equally special young man, named "Ben", beat the odds.

I'm honoured to call these people my friends, as I promise to drop by in the New Year and never again stop writing!!!

Once again, "I wholeheartedly wish you and your family a Merry Christmas.

Forever yours,

Matt Kamaratakis