The Ben Miracle

The first in a series of longer posts about Ben, special needs, and other stuff . . .

Our son Benjamin is a globally disabled 7 year old who currently doesn’t talk or completely walk on his own. He was born with a congenital heart and other defects and has had 14 total surgical procedures, most recently hip surgery to repair a hip that has been weak since birth. Most of the operations occurred during his first 18th months of life, and included three heart operations, several heart catheters, a tube put in for antibiotics (broviac tube) and ultimately a feeding tube. The night after his third heart operation I answered a call at 2:00 am from an overnight doctor whose initial words were “Mr. Cox, your son is still alive, but….”. We were told Ben’s heart had stopped due to internal bleeding. Fortunately a PICU nurse was right there and was able to quickly call for help and get his heart pumping again.

So you can imagine why at 2-1/2 years old Ben couldn’t sit up on his own, much less crawl. He was impaired by the combination of his neurological birth defect and all the trauma, anesthesia and hospital stays he had to endure. Ben’s responsiveness was limited to minimal reactions to lights, ceiling fans and fortunately toys that lit up and spun around. In addition to all of this, Ben couldn’t chew and swallow any food, which ultimately led to the feeding tube. What he did consume he often threw back up because of a quick gag reflex and poor muscle tone. And to round it out, because he spent so much time indoors and in bed he had extreme sensory deprivation. He couldn’t stand the sun. Wind blowing in his face would cause him to gag. Ben could barely stand sitting in the grass due to how uncomfortable that would make him. All of this made it very difficult for us to take him anywhere, even to a restaurant. At 3 years old Ben was stable but we had no idea what his quality of life would be.

That is when Ben’s tremendous spirit and a little luck started to turn things around. When Ben was 3 we started to find some really good providers of therapy services, but one we found by luck changed our lives forever. Our sister-in-law is a special education teacher. She was taking a tour of the United Cerebral Palsy Center of Greater Cleveland and learned about their intensive children’s therapy class. She immediately thought of Ben and told us all about it. Within weeks we were enrolled and Ben began physical and occupational therapy.

Ben learned to sit up immediately, and within a couple weeks he was crawling. Session after session, he got stronger and learned something new. How to sit still and reach for a toy. How to transition from laying down to sitting up, and then to crawling. And ultimately, he learned to pull himself into a standing position. During this time he was also receiving feeding therapy which strengthened the muscles around his mouth and taught him how to swallow pureed food (no more feeding tube!). Swimming therapy built up his muscle tone and also taught him to stand in water. Swimming was also huge for his sensory deprivation issues. Water pressure is great for the overall nervous system. We even found a horse therapy clinic where he built up his core muscle groups by balancing on horseback.

As Ben got stronger, his mental development accelerated as well. Ben may never talk, but his ability to communicate with the world has grown so much over the years. He understands a lot of the directions we give him and directly interacts with people, often times flashing his huge smile and bright blue eyes when he wants to get his way. In so many ways he is a typical kid. He wants to play and watch cartoons and be sung to and eat his favorite foods.

All of this therapy, progress and attention led to an amazing accomplishment. Last February 2011 Ben did something that at one time we assumed was impossible. He walked on his own. He stood up, let go of his therapist’s hands and walked forward on his own two feet — physically able to hold his body up and mentally able to understand that he wanted to walk across that gym floor and prove to everyone he could do it.

The Ben Miracle is that after all he has been through, he never gives up. He is relentless. He smiles way more than he frowns and with each accomplishment his eyes light up with the look that any kid would have when they do something for the first time. Even after spending the summer in a half body cast from hip surgery which was necessary because he WAS walking, he always kept his spirit and now is on his way to walking again.

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