Monday, September 5, 2011

Our Day In Hell Part 5 - Bonk

It seemed like every day we faced new challenges we never could have expected, both big and small.  One that really stuck with me was when we decided to take India on a walk.  We put her in her stroller and set off towards the local park.  Just after we headed out, India started whimpering, then crying, then screaming.  To save our lives, we couldn’t figure out what was wrong.  We re-positioned her, held her, tried to feed her, adjusted her straps and finally gave up our walk and went home.  When we arrived back at the house, we undressed India so we could change her diaper and to our horror found a sharp sticker from some sort of weed embedded deep into the skin of her buttock.  Somehow this damn sticker found its way into the stroller and ended up penetrating her delicate skin. 

Although my little girl was old enough to communicate verbally, she couldn’t because of her Cerebral Palsy.  The only thing she could do was cry in the hopes we’d figure out what was wrong.  This was very rough for me because I was unable to understand what she was trying to tell us. It was especially hard because I felt so sorry for the frustration my little girl must have felt at not being able to communicate. 

Veruca and I pushed on, getting up every morning, putting on our shoes, taking that first step and doing the best we could.  Fortunately, after a couple of years my business began to take off.  I started to push Veruca to up the amount of therapy for India.  I truly believed that the more therapy our daughter could participate in the better; and since we didn’t know which therapy was beneficial and which one wasn’t, we just decided to do all of them in unprecedented amounts.  We began to travel around the United States and Canada for services.  I would rely on Veruca to find the services and I’d find a way to pay for them.  Our daughter did begin to progress as a result of the therapies, but I still wish I knew then what I know now. I wish I’d known that simple lifestyle changes with good routines and plenty of activities at home truly had the potential to help India’s progress and have a lasting effect, rather than twenty different types of therapies away from home. I didn’t know this then—I didn’t know how to create a stable home and beneficial routines, or how to encourage India to be independent—I thought I’d get all the answers from therapies. They did help somewhat though: India began to gain muscle tone and to sit with her legs crossed for short periods of time unaided, and she developed some strength.  She started eating better and clearly became happier.

We were ecstatic about these improvements; we thought she was beating the odds in a huge way.  So over the next nine years, we put absolutely everything we could into India’s care and rehabilitation.  *The list is long and reached costs of up to $250,000 per year.  If we had the money, we’d pay cash, otherwise we’d max out our credit cards and use a second mortgage on our home to cover the expenses.  The intensive regiment of interventions and therapies kept India, Veruca, and at times our second daughter on the road for the better part of each year, including almost 12 consecutive months in Canada.

While all of this traveling was taking place, I also had to run my company, which was booming.  I often had to do this from wherever India was, remotely.  I was constantly in an airport, hotel, hospital, restaurant, or intervention facility with my laptop and cell phone, working away.  There was even a time where India was yet again on life support and I was forced to work while sitting by her side, but more about that later.

Almost two years after India was born, we had another little girl, Harriet.  As Harriet grew, she became best friends with India.  Harriett didn’t see anything wrong with her sister; she treated her like any other kid.  This included screwing with her big sister.  Harriett could execute guerrilla warfare on India, attack and run.  Of course India couldn’t pursue Harriett, which made the game all the more fun for India’s little sister.  There was one day that Harriett’s guerrilla warfare came to an end and I’m happy to say that I was fortunate enough to witness it.

Harriett must have been about 4 years old and had gotten her hands on a long tube from a roll of gift-wrapping paper.  She was running in big circles around the living room, whacking India’s head with the tube every time she passed her.  India was furious, yelling profanities in her own way after every whack.  What I didn’t notice at the time was that India was intently watching her sister’s every move, waiting to strike.  The moment finally came during one of her sister’s whacking raids.  India had patiently waited for her sister to become complacent, to get too close.  Harriett came in for another attack on her sister, and as she approached India, raising the long cardboard and preparing to drop the bonker on India’s cranium, India shot out her one good arm, grabbing Harriett’s hair.  Before I knew it, India was yanking her sister’s head back and forth.  Harriett was shrieking at the top of her lungs, India’s eyes were wide open, a smile from ear to ear as she performed her well earned payback.  I’d never seen India look so satisfied ever in her life. She was in control.  Harriett was screaming at an octave high enough to shatter glass, India was laughing at the top of her lungs, the dog was howling, the cats had run for cover, and there I stood, sipping a cup of coffee watching the mayhem in my living room, happy as a father can be.  My daughters were interacting just like other siblings do around the world, for the first time.

India was empowered after the whacking event, and she had much more confidence, not to mention respect from her little sister.  India began to tease Harriett as often as she could.  One of her favorite things to do that just drove her sister crazy was to mimic Harriett when she was talking to her mother.  You see India at the time really couldn’t talk.  She could however open and close her mouth at whatever speed she wanted.  Whenever her sister was talking to her mother and her mother’s back was to India, India would open and close her mouth at the same rate her sister would while speaking.  This would infuriate Harriett, she would turn bright red and yell, “Stop it, India!”  When the girls’ mother would turn around to look at India, India would have stopped mimicking her sister and would give her mother an innocent look.  India couldn’t ever keep the innocent look on her face though, she would curl up and giggle in a beautiful high-pitched laugh from deep inside her; it was heartwarming. 

As India became stronger and gained more control over her body, she learned to maneuver her manual wheelchair by herself.  She would wheel that thing all over the house using her one good arm.  This was a new sense of freedom for India.  The first time that India actually was able to move the wheelchair from one part of the house to another was an evening to remember.  Veruca and I were in the kitchen talking as dinner was being prepared.  We had put India in her wheelchair back in her room.  Until that point, India could only rotate her chair in circles.  Veruca and I were deep in conversation when we heard India yelling “eewww, no Gary no, eewww,” followed by a loud squeaky laugh.  As we spun around to see what was happening, we saw India in her chair, parked just outside the bathroom, watching the dog drink out of the toilet.  India had figured out how to wheel her chair out of her room, down the hall, and position herself in front of the bathroom door so that she could watch the family dog have a refreshing drink of toilet water!  India made a point of telling the story of her dog drinking toilet water as best she could to anybody who’d listen for many months to come.  It made her laugh like a loon each and every time she told her story.