Never Give Up

July 9, 2013

   

This past week on July 4th was the date of Jesse's second birthday. His first birthday was spent lying in a bed at Sick Kids Hospital with several tubes and lines running into him, his body swollen from meds and liquids and he was barely out of an induced coma. Jesse laid motionless and unresponsive in any way. There was a lonely and somewhat pathetic chocolate cake sitting on the bed with one candle in it. Bonnie, Kristin and I cut into it and tried to eat but it was hardly a celebration as we knew Jesse laid there inches away just trying to survive. The day crawled past painfully slow, we eventually left the cake at the nurses station and went back to processing our emotions and praying.

 

But this year was different. This year, Jesse surrounded by special friends was passed around to sit on the laps of those who have loved him, supported him and believed in his recovery.  There was real celebration, singing, laughing and the unmistakable feeling as the old song put it, that "love was in the air". Jesse is a happy boy that remembers that he loves being with people and being part of lots of activity.

 

For several months now Jesse has been experimenting with different vocal sounds and we believe that the day will come when Jesse will be able speak clearly just like the rest of us, but for now if Jesse could talk, I believe that he would look into your eyes with thankfulness and say something like this...

"I didn't know I would hurt myself if I fell in the water. I didn't know I couldn't breathe in there. My mom was so afraid and when I think of that it makes me so sad. Now I'm trying my best to remember things, but I don't know why I forgot them. There's so many things I don't remember how to do. I've been having a hard time but I didn't know you would come and help me so much. I heard people say I'm a miracle but it doesn't feel like it. It just feels like I have to keep trying so hard all the time. My family says that you all love me, but I don't know why 'cos I'm just a little kid who can't do very many things right now. My Grammy and Papa Bob tell me all the time that I'm so smart. That makes me happy. My mom put a Superman shirt on me today and has been calling me the "Man of Steel" all day. I love my life. I love that you love me. So I'm going to keep trying my hardest because I know I'm not really the Man of Steel, but I'm just a little kid so it's OK if I keep pretending. One day though I will be strong enough to give you a tight hug and a kiss on your face and say I love you too and thank you for helping me!"

I'm sure that comes across as more than sappy to some of you but trying to get into Jesse's head is a habit we've gotten used to. What is he thinking? What is he experiencing? Is he getting the information and stimulus we are sending him? The sounds he is making and the look in his eyes...what is he trying to say to us and how do we interpret them?

 

There is so much that Jesse needs to learn and there is so much that we need to learn to help him learn. The late Glenn Doman, founder of the Institutes for the Achievement of Human Potential, in his book "What To Do About Your Brain-Injured Child" (available for purchase through our Resource page) states that, "Of all the children that come to the Institutes for treatment, some will be so paralyzed that they are barely able to breathe. Some will be so mildly injured that they appear to the eye to be totally well. Some of the kids will be paralyzed from head to toe. Some will be blind as a bat. Some will be deaf as a post. Some will suffer from recurring violent convulsions.  Some will be unable to talk or even make sounds. Some will have all of these problems.

 

They will come with recorded IQs of 90, 80, 70, 60, 50, 40, 30, 20, 10, or 0.  Most of them will be said to have unmeasurable IQs. They will arrive having been diagnosed as brain-damaged, mentally retarded, mentally deficient, cerebral-palsied, Down syndrome, spastic, emotionally disturbed, flaccid, epileptic, quadriplegic, autisitc, psychotic, hemiplegic, rigid, etc.

 

Almost every one of them, on the basis of lengthy and sophisticated examination, we will diagnose as brain-injured, meaning that the problems are not problems of weak arms or legs, or poor musculature, or malformed organs of speech, or defective eyes as much of the world has believed.  Instead, we will conclude that their problems originated within the brain out of some accident which occurred before, during, or after birth and that either interfered with the brain's ability to take in information or with the brain's ability to respond to it."

 

During Jesse's waking hours there is barely a single minute that we are not stimulating him in some way, whether it is visually, auditorially or through tactile means so that his brain is constantly focused on processing all the stimulae entering his brain. Of all we have learned the most important fact is that THE BRAIN GROWS BY USE. The muscles in our arms grow by use, as do the muscles in our chest and legs, etc.  The brain is the same. It grows by use.

 

Back in the late 60's and early 70's a group of brilliant scientists, at the frontiers of brain science made a series of unexpected discoveries. In the book "THE BRAIN THAT CHANGES ITSELF" by Norman Doidge, M.D. (available through the Resource page on this site)  Doidge states, "They showed that the brain changed its very structure with each different activity it performed, perfecting its circuits so it was better suited to the task at hand.  If certain "parts" failed, then other parts could sometimes take over.  They began to call this fundamental brain property "neuroplasticity." Neuro is for neuron, the nerve cells in our brains and nervous systems.  Plastic is for "changeable, malleable, modifiable."  These men gradually overturned the doctrine of the unchanging hardwired brain.  Doidge continues, "They showed that children are not always stuck with the mental abilities they are born with; that the damaged brain can often reorganize itself so that when one part fails, another can often substitute; that if brain cells die, they can at times be replaced; that many "circuits" and even basic reflexes that we think are hardwired are not.  One of these scientists even showed that thinking, learning, and acting can turn our genes on or off, thus shaping our brain anatomy and our behavior - surely one of the most extraordinary discoveries of the twentieth century."

 

So what is my conclusion to all of this?  Just this...the human brain in my opinion is the most incredibly complex and adaptable mechanism in existence, far beyond the imagination or creative reach of humankind.  The medical and scientific minds of our time are amazing.  But as profound as they are we need to remember this and acknowledge it, scientists may have created the word "neuroplacticity" to describe a function of the brain but they have not created it's ability to perform in such a way.  This is a functional law built into your brain and mine by the one who created them. Science only discovers the natural laws that God has set in motion.

 

As I close this blog I want to send out a special big thank you to KATZIMAGING Custom Cakes. They designed, created and donated the most beautiful, inventive, and downright funky birthday cake for Jesse's birthday party as well as an assortment of delicious little "cake pops".  Let me personally endorse and recommend their services to anyone who is looking for something really special for any upcoming event. All I can say is Mmmmmm good!!!

 

One additional note, something new has been added to this site.  You can now simply click any of the icons at the bottom of this blog to immediately forward it to spread Jesse's story of hope to those who need more "NEVERGIVEUP" in their lives.

 

Bob Arrigo

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