Our exit from the hospital came
with a lot of conflicting information. Some doctors told us that India
would be just fine and would have no serious residual issues. Other
doctors told us she might be terribly damaged and might not survive long.
As parents, we gravitated towards the positive prognosis. We couldn’t
imagine the other, brain damage.
Home was different when we
arrived. Actually, home wasn’t different, we were different. We’d all
been brutally traumatized, and in India’s case, physically. We settled in as
best we could but it was hard. Despite the love and help from family and
friends, we couldn’t really get our bearings and it quickly became clear
that India had substantial problems. This was terrible for me to
accept. I’d look for any sign of normalcy but these became fewer and
fewer.
I can remember sitting with
India, looking at her little hand that was already retracting into a fist, a
symptom of Cerebral Palsy. Her tiny body was clearly damaged. There
was no muscle tone and she was like a ragdoll. She cried all the
time, constantly. We were stressed, damaged, terrified of seizures, and
couldn’t sleep. In addition, I had to jump back into my new career and
find a way to come up with unimaginable amounts of money for insurance
deductibles, non-covered expenses, living expenses, future expenses and God
knows what else. It was an impossible time. If my memory serves me
correctly, we quickly found ourselves $130,000 in the hole and I was bringing
in a meager $19,000 per year.
Every step of every day was
difficult. India would choke, she’d scream, she fell further and further
behind in every imaginable way. She’d often become ill, get dehydrated
and have to be hospitalized. Our lives became unrecognizable.
As new issues with India
unfolded, we did everything we could to counter them. We began to
research and learn about every possible intervention that might make so much as
the smallest improvement in our child. In all fairness, I’m giving myself
a bit too much credit at this point. During India’s first year of life, I
was spending the majority of my time trying to earn enough money to cover the
bills. Veruca was incredible; she did everything she could for our
baby. I heavily relied on her to figure out what the hell we needed to
do.
We were literally bombarded
with ideas, therapies, medicines, equipment, and on and on and on. The
problem was that we had no real idea what was worthwhile and what was useless.
We relied heavily on “professionals” for guidance but if I only knew then what
I know now.
One of the “professionals” who
was influential to us at the time was a young physical therapist. He
seemed knowledgeable and level headed. What I didn’t know was that he
practiced an outdated version of physical therapy. According to his
version it wasn’t recommended to allow children to make certain movements unless
they had reached the developmental milestone that normal children reach prior
to making that movement. Thus, a child would not be allowed to stand up
unless they mastered independent sitting and so on. I now understand how
harmful and destructive this approach is, but back then I didn’t know any
better. This physical therapist’s influence on us, especially on Veruca,
was horribly damaging to India. The following paragraph highlights just
one event that happened as a result of this misinformed professional
disgrace.
I was outside with India one
day. As I was holding her, she was pumping her legs as if she were
walking. I put India down on the ground in the standing position,
supporting her arms. India began to take one step after another. It
was amazing. She walked the entire width of our yard. I called to Veruca
to tell her what was happening. My heart was pumping so hard I could feel each
beat in my temples. Veruca came outside, frowned, and told me to not
allow India to walk because she wasn’t able to sit unaided yet. I was
shocked and confused. Here was our little disabled girl walking!
India was doing what I knew was a good thing. There could be nothing bad
about this! I argued with Veruca, I told her that it was common sense
that we should allow India’s natural instincts to take their course right
now! Veruca insisted that she was correct and that I didn’t know what I
was talking about. Veruca dismissed all of my pleas for continuing to
support India’s walking. Every bone in my body told me to continue, but Veruca
was the master of belittling others’ opinions and knowledge and did her utmost
to make everyone wrong at all times. She had opinions about everything
one can imagine and she continuously forced her opinion on others.
Unfortunately, I was new in this marriage, didn’t know Veruca very well, and
had no concept how to enforce a boundary, much less stand up to an aggressive
spouse. I gave in, I stopped helping India walk. I will regret this for
the rest of my life. The damage that was caused that day by stopping our
daughter from walking can’t possibly be calculated.
Over a year later, Veruca
admitted that her opinion about India’s first steps came from the young
physical therapist. She acknowledged that this was a terrible thing to have
said. However, the time that had passed was just too long for India and
when I put her to stand again, she wasn’t taking steps any more.
I kept the soiled socks that
India wore that day for years. I kept them even though it hurt me to look
at them. She didn’t walk again for many years and when she did, it was
never again like the first steps she had taken. Her body had been too
ravaged by that point.
We didn’t dare let India leave
our sight. We were terrified of her seizing or choking while in someone
else’s care, so we were constantly monitoring her. But after much
persuading by concerned family and friends, we finally agreed to get some help.
Because of India’s disability
and our low income, Veruca and I qualified for state sponsored “respite
care.” This meant that we could have somebody from a state qualified
agency,trained in caretaking and emergency medical procedures, take care of
India for little to nothing for about 20 hours a month.
When our first respite date
came, we were beyond nervous. The thought of leaving India alone with
somebody else was overwhelming. Veruca and I decided that there was no
way we could be far away from our daughter, at least not on this first respite
visit. So we decided to just walk around the block, which was as far as
we could be from India. The respite caretaker arrived, she was a very
large rosy-cheeked lady who seemed nice enough and as if she knew what she was
doing. We talked with her for about 30 minutes explaining everything she needed
to know for the care of our daughter. Then Veruca handed the caretaker a
baby sling to carry India around the house. Veruca asked her if she knew
how to use it, the respite caretaker said yes, and she ushered us out the door.
We walked around the block several
times, holding hands. It was nice to get out. The sun was setting,
the temperature was nice and cool, and this alone time was just what we
needed. It was the first time in awhile that we’d been outside, just the
two of us, and I felt almost human. After about 30 minutes, we decided
we’d been gone long enough. I was feeling a sense of rejuvenation, like
the dark cloud had been lifted and I could handle another day of this new
life. As we walked in our front door that nice feeling evaporated
instantaneously.
The first sign that something
was wrong was that the respite caretaker was very red and her face was wet with
sweat. I stood there staring at her trying to figure out what the hell
was going on. Then I saw my daughter, or rather, I saw my daughter’s
foot. It was sticking up from the top of the sling. The respite
care provider had put my daughter into the sling upside down. What I
hadn’t realized was that I had been so shocked with what I was seeing that my
hearing was literally muted; I was standing there dumbfounded. As the
volume of my surroundings elevated, the next shock hit me; I could hear my
daughter’s muffled screams from the bottom of the sling.
Veruca ran over and pulled
India out of the sling and away from the respite caretaker. India was
discolored and sweaty from a lack of oxygen and the heat. The caretaker
was clearly flustered, became defensive, and blamed everything on the device
rather than her lack of common sense.
Without saying a word to each
other, Veruca and I both knew that we wanted this human train wreck out of our
home and lives as quickly as possible. Veruca rushed into our bedroom to
get the checkbook, and came right back out with the check filled out plus a
generous tip included. I felt a massive sense of relief when my wife
handed the woman her check so she could leave. But to my surprise, she
didn’t get up off the couch. She leaned back, put one leg over the other, and
started watching TV! Veruca and I stood there flabbergasted, almost as if
we had been transported into an episode of The Twilight Zone. Veruca
finally got up the nerve to say, “Well, thanks for the help, I think you better
go now.” The respite caretaker looked at Veruca with astonishment and
said, “You’re supposed to feed me. I’m hungry so you need to feed me before I
go, it’s our agreement.”
You could have heard a pin drop
in my living room. The caretaker sat there staring at Veruca, Veruca stood
there trying to absorb what this woman just told her, and I found myself wanting
to crawl under the coffee table, insert my thumb into my mouth, and curl up in
the fetal position.
So there the three of us sat, Veruca
on a hard wooden chair, me perched on another, while the caretaker lounged on
our soft couch, slowly eating a hastily-put-together meal and watching TV. She
was oblivious to our presence. As I watched this oversized woman, all I
could think about was Mr. Creosote from Monty
Python’s movie “Meaning of Life”. In this skit, Mr. Creosote eats so much
he projectile vomits into a bucket and finally explodes. As I sat there
waiting for this lady to explode, I realized that it would be a very long time
before either my wife or I could trust anybody again to take care of our little
angel. This experience screwed any chance of us having alone time in the near
future and that’s exactly what happened.
