The Bright Light of Hope

May 28, 2013

It's late in the evening on an ordinary Monday. Nothing amazing seemed to happen today.

 

Kristin and Bonnie took Jesse to back to back physio appointments on the other side of the city. The therapist had accidentally double booked herself for our second appointment so Kristin graciously gave up her appointment to allow another brain injured child to have her therapy.  The little girl who is five years old went in by herself while Kristin and Bonnie visited with the mother.  Another single mother who has devoted her life to rehabilitating her little girl. They traded stories and told me all about it when they came home.  The day passed fairly uneventful until checking my email after dinner when we got notice of three different fundraisers being planned to help cover the costs of Jesse's therapies.

 

A couple of hours later when I sat at my desk following up on the mail and updating Jesse's website with the event information, for some reason I clicked the video "Jesse's Miracle" on our home page. I hadn't watched it for a while. To my surprise three times I found myself in tears as once again I was facing the reality of the enormity of loss that Jesse suffered in just a few moments of time last May.  A ten month old child developmentally tested before his accident and accessed at 97%+ putting him in the top 3% of children his age in both cognitive and physical development.  Jesse was learning and acquiring new skills faster than we ever realized he could.  And similar to the widely accepted fact of mankind's inability to manage the speed at which knowledge is being gained, Jesse discovered a small pond of water before he was ready to manage the discovery.

 

The afternoon had found us sitting on our sunny back deck under the shade of our umbrella looking over the contact information this young mother had shared with us earlier in the day. This we have learned is the accepted practice of parents of the many brain injured children we have met over the past year, sharing contact info for their best therapists. The ones that have gained the most change in their children. With no intention to diminish the credit of the traditional medical profession I have to admit that we have not had a single referral from a medical doctor, not even our incredibly well respected neurologists, as traditional western medicine as we know it doesn't believe that an injured brain can be restored.  Fortunately, thankfully we have discovered the error of that belief.  All our referrals have come from parents who have discovered successful life changing therapies on their own, and we have shared our successes with them.

 

Since Jesse's drowning we have walked away from hiding in the dark shadows of hopelessness and discouragement and into the bright light of hope as Jesse has shown us week after week that in spite of the absence of a crystal ball, he knows where he must go.  It's the getting there that is the mystery. All these therapies are costly, and as well they should be.  The work the practitioners do is for the most part amazing.  They have spent their lives training themselves to understand how the human brain works, how it grows, how it rebuilds and restores itself.  They believe an injured brain can be restored and they are restoring them. It's a long, slow and costly road that is dotted with heroes, minor and great with talents experience and sensitivity to effect positive changes where no one thought possible.

 

My brain cannot comprehend the incredible thing that is...well, my brain!  Did you know that your brain is just 2% of your body weight yet uses 20% of your body's energy, or that there are more than 150,000 kilometers of nerve fibers in the brain, or that the slowest speed at which information travels between the neurons of your brain is 260 miles per hour and that there are more electrical impulses generated in one day by a single human brain than by all the telephones in the world. This is an incredible masterpiece of design and intelligence that we are dealing with,  one that we're willing to bet is able to figure out how to heal itself. We know that minute by minute Jesse is putting the pieces back together.  We often find him in a blank stare. The specialists tell us not to interrupt him as those are times when he is completely focused on something he is experiencing.  It may be a tactile sensation like the wind blowing across his face, or a pain in his ankle, or he may be hearing a sound or music that his brain is organizing in a way that makes sense to him and that he can understand, or he may be remembering something new he has learned or thinking something through.  At these times we can get in front of him and look him straight in the eyes and he will just seem to look right through us as if we weren't even there. Then when he is ready he gives a slow and easy blink and he's back, responding to whatever is going on around him again.  It's awesome in the truest sense of that word. Awesome to watch a brain growing right before our eyes.

 

So to all the parents of brain injured children, those children injured from birth and those with acquired injuries, cerebral palsy, muscular dystrophy, autism, traumatic brain injury, stroke, epilepsy, Lyme disease, Multiple Sclerosis, and on the list goes, we applaud your courage.  Your tireless effort is to be admired. Your commitment is rare and your kind of faith, a faith that flies in the face of tradition and refuses to surrender to hopelessness is the kind that your special injured children will thank you for.  The job of parenting is not for the meek.  Whether your children are injured, sick or well, parenting for the most part is a thankless job yet requires an unyielding commitment to "be there" in good times and hard times alike.  Never knowing what tomorrow may bring, as parents and grandparents our place must be a place of readiness, ever prepared to stand in the gap for our kids when they can't stand on their own.

 

We love you all for all that you do to support Jesse's recovery. When you see Jesse's smile, know that he is smiling for you. All of you have helped him secure the joy of life that every child should know.

 

Bob Arrigo

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