Wednesday, January 12, 2011

The gift of grace

I've heard Christopher Hopper (left) speak about his son Benjamin (right) at a number of Holland Bloorview events. In this elegant piece he shares how his persective on Ben and his disabilities shifted over time. Thanks Christopher! Louise

The gift of grace
By Christopher Hopper

My first Father's Day gift was my son, Benjamin. He was born June 16, 1996, 12 weeks premature and weighing all of three pounds. For all the joy that Ben has brought into our lives, his birth was one of the worst days of my life. The shock of a pre-term birth following what had been a normal pregnancy, concern for my wife Michele's physical and emotional condition, and the reality that Benjamin might not make it, were overwhelming.

The journey that started that afternoon has had more than a few ups and downs. Following transfer to Sick Kid's Neonatal Intensive Care Unit, Ben was diagnosed with E. coli sepsis. That was the night we almost lost him. While the staff in the NICU were able to pull him through the crisis, the sepsis progressed into a drug-resistant E. coli meningitis.

During this period I worked hard to become the expert on Ben's condition. I read his chart. I asked questions of the nurses, residents, interns and doctors. I participated in consultations with infectious disease and neurosurgery. I was going to make sure that I understood what each of the options were, what the relative merits of each option were, and that no course of action was taken unless I approved of it. To me, Benjamin's condition was simply a problem that careful treatment and time would solve. Ben's medical chart at the time described his parents as follows: “Mom is emotional. Dad is stoic." The reality was that I was a 'kook' who was barely holding on in a situation I could not begin to grasp.

Three long months and one relapse later we were taking Benjamin home. Despite all that he had been through, he was a happy, content, loving little boy.

Our first couple of months following Ben's discharge were quiet and happy. Beyond all hope or expectation, he had survived. With the exception of medicating Ben with phenobarbital to suppress some seizure activity that was a hangover from the meningitis, things seemed quite normal. Then he started to miss his milestones and we got to learn a new vocabulary: cerebral palsy, dystonia, quadriplegia, deaf.

We always knew there was a possibility of some lasting damage, be it from the premature birth, the meningitis, or the drugs used to treat it. In the intervening months since Benjamin's discharge, however, we had allowed ourselves the illusion of normalcy and had begun to hope that we had beat the odds. Well, hope is not a strategy and it was clear that we needed one. From my perspective, Ben's condition was one that we simply needed to figure out how to fix.

Therapies were initiated and silver bullets were explored. But as the years passed a couple of things became apparent. First, what I wish most for Benjamin is the same thing that I wish for all of my children, namely that they live a happy and fulfilled life. I am fortunate in that Ben is one of the happiest individuals that I know and that his life is rich in experience and full of those that love him. Second, the physical challenges that Benjamin faces are ones that he will deal with all of his life. While we continue to engage in therapies for him, it is no longer with the hope of 'curing' him but to ensure that he lives as full and happy a life as possible.

It's 14 years later and I've given up silver 'bullets' for silver 'lining.' Ben has taught me more about grace, love, compassion and happiness than I ever thought possible. Every day Benjamin's mere presence makes the world a better place. Not only his family, but all who interact with him, can't help but come away changed for the better. While no parent would ever wish their child to suffer any of the illnesses that Ben has had to endure, I do feel blessed to have such an amazing young man as my son. And for that, my life is all the richer.


Dear Mr. Hopper,

Your words will forever live in the depths of my soul, as the story of you and your son is similar to that of my father and me. For, I too was born with Cerebral Palsy that arose from a premature birth and complications. I, too, was almost lost.

My parents were sitting with me in the NICU, as I had already been lying in an incubator for three weeks, and my Father places his hands through the alotted holes to say hello. However, at this very same point and time, my parents hear a heart monitor going off --Beeeep...beeeep...beeep... My Mom looks at my Dad and Says, "A child is dying." My Mom, who also hasn't left my side, looks around to see which monitor it is; for she is trying to save the professions, whom will be running through the free-swinging doors, a few precious seconds. But, she can't find the monitor. The last thing she does is look up at mine. The alarm is flashing --a bright red. Doctors and nurses rush to my aid. My Dad is scared and frantic, or even more "kook" than you, and grabs the doctor by the white lapels of his coat and lifts him into the air.

Today, with all of life's ups and downs, and as I brace myself for yet another surgery, I sometimes find myself thinking, "Why did he put that doctor down?" "Why couldn't he just let me go?"

I have yet to thank my Father for this day, which happened so long ago, but has never left him. I do, however, have the answer to my questions: "He, like you, wishes his children to live the life of their dreams."

With this in mind, and on behalf of you son, Benjamin, I wholeheartedly share these words, "Thank you for all that you've done and still continue to do for me. I love you, Dad!"

Yours truly,

Matt Kamaratakis

When you mentioned how Ben's medical chart described you as stoic and your wife as emotional,it brought back memories of a really bad time in my life when my son was hospitalized. The nurse left her clipboard in my son's room and I read it. I was livid. I thought that instead of writing an essay about how stressed I was, she should have been doing MORE for my son. Until that day, I had NO IDEA medical professionals chart the behavior of parents.

Ben sounds amazing. Thanks for sharing your story.