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.
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