During India’s 11th year, she began to show signs of
chronic hip pain. Her condition became progressively worse over the next
twenty-four months. Viktoria and I did everything we could to prevent the
problem from becoming worse but Mother Nature had other plans.
Because of her worsening condition, we
took India to visit her local Pediatric Orthopedic Surgeon. She had
multiple x-rays taken and the results were chilling. The tops of India’s
femurs had grown perfectly straight versus the natural angle placing the ball
into the hip socket. There were no hip sockets and the balls of femurs
were worn down to virtually nothing; just jagged edges.
India's pain rapidly became
unbearable; every movement came with a grimace and moan. This was crushing for
me as her father, to watch my child in so much pain and not be able to take it
away. She’d wince with every move, often bringing a scream to her mouth or
tears to her eyes. I’d regularly have to hold India in my lap, while I
tried to sooth her. She’d sit there holding onto me with her one good had
saying “owie daddy – help me”.
India’s Orthopedic Surgeon told us
that our only real option was to open up each of India's femurs, saw of the
tops and stuff the void left behind where the bone was removed with material to
try and prevent the remaining bone from piercing through her muscle and
skin. This invasive procedure would have taken up to a year for India to
recover and virtually guaranteed a lifetime of pain and discomfort. In
addition, my little girl was so fragile; I didn’t think she’d have good odds of
surviving this surgery.
My wife Viktoria and I did a massive
amount of research to find alternatives and the best doctors in the world that
could help India. We discovered that some of the finest physicians out there
for India’s condition are located on the east coast of the United States.
India and I immediately flew across
the country to meet with these cutting edge physicians and get their
suggestions on how to help my little girl. The doctors suggested 3 procedures
that were relatively non-invasive and outpatient. We booked India’s
surgeries on the spot for the following month, and then flew home.
Just after India and I returned from
the east coast, a lump was found in my chest that appeared to possibly be
dangerous. My doctor immediately scheduled surgery to remove the
mass. My operation took place on a Wednesday; it took about 2 hours to
remove the growth. Two days after my surgery, I began to have substantial
internal bleeding. The doctor had to remove a large quantity of blood from my
chest, leaving an impressive dent in my right breast. Two days after
that, I flew India to the east coast for her surgeries. The trip to the
eastern United States was rough on me as I had just been cut open, was black
and blue, leaking fluids, exhausted and experiencing quite a bit of pain.
I had to constantly lift and maneuver India, her wheelchair and equipment
throughout the trip on airplanes, shuttles, trains and all around airport
terminals. All the while trying to be gentile with India because of her
hip pain.
India’s mother had flown the same day
but on a different airline. She told me that she didn’t want India to
stay with her on the first night because she was tired from school and the long
flight to the east coast; she needed her sleep. Even though Veruca knew
about my surgery and complications several days before and that I had also just
finished a long flight, caring for India was out of the question for Veruca,
she wanted a good night’s sleep.
I brought India to Verucas hotel room
the next afternoon so that she could spend the night with her mother. As
I was leaving Verucas room, as usual, India began to plead with me to not leave
her with her mother. I told India that I loved her but she needed to stay
with her mom. 2 hours after leaving India in Verucas room, I received a call
from Veruca letting me know that India hadn’t let up on wanting to be with me
and had become more adamant that she wanted to leave. Veruca asked if I’d
come get India and let her stay in my room, I happily agreed.
We arrived at the hospital the next
day at 6:00 am. I could feel India’s apprehension and fear, not to
mention my overwhelming worries. We were taken to the pre-operative room
where I placed India in her hospital gown and onto the gurney. The nurse
said that only one person could accompany India to the surgery prep-room.
India’s mother asked to be the one to accompany her. Not wanting to make
a scene, I agreed. As they began to wheel India off with her mother in
tow, India in a scared voice began to say “Daddy, Daddy”, reaching for me. I
paused, foolishly thinking that Veruca would respect India’s request, turn back
and let me go with our child, but this didn’t happen and I was foolish to have
expected it to have.
Several hours later, we were notified
that India was out of surgery. We went into the recovery room and saw an all
too familiar sight. India was unconscious, swollen, her skin a
grayish-yellow and surrounded by monitors and intravenous lines. Her lips
were dry, the sides of her head stained with yellow surgical Iodine solution,
ears stuffed with gauze, blood seeping through. The numerous bandages on
her surgical points all had had red splotches. I’ve been in this
situation so many times with my baby girl, it’s difficult to describe how
deeply painful it is for me to see my child in this state; regardless of the
reason. I find myself indescribably sad, anxious, helpless, physically
exhausted and even angry. This sweet little girl did nothing to deserve
this, nothing at all.
When India was released from the
hospital, she was very lethargic and drowsy; she looked terrible. We took
her back to the hotel to rest. The doctor’s philosophy was to get the
patient the hell out of the hospital ASAP to recover; hospitals are major incubators
for infection. Veruca wanted India to stay in her room the night she
returned to the hotel. India was in and out of consciousness as we got
her set up in Verucas room. She wasn’t looking any better and clearly had
significant pain, enough so that Veruca suggested that she should stay an extra
day or two in case India had to be hospitalized; Veruca was scheduled to leave
the next day. I responded that it might be a good idea; I felt the odds
were high that India would have to be hospitalized.
The first night out of the hospital in
Verucas room was extremely tough for India. She was in a lot of pain and
took a huge amount of care. According to Veruca, she was up most of the
night caring for India. The next morning when I arrived, Veruca was
packed and ready to go. After a long night caring for India, she’d
completely blown off our conversation about her staying a couple more days to
help with our daughter. She was leaving regardless of the possibility of India
having to be hospitalized. I didn’t say anything; I’d seen this
narcissistic behavior from Veruca many times before. When I confronted
Veruca with this later, she would use the excuse that she had to get back to
class, although her professors gave her all the time off she needed. She’d
also use the excuse that she had no money even though I offered to pay for her
room and meals.
Luckily, India didn’t have to be
hospitalized. Viktoria, India and I spent the next week in our east coast
hotel room so that India could recover enough to take the long flight
home. It was a stressful, exhausting and a long week as India was weak
and in pain most of the time; she required a lot of care. We were able to
take an afternoon drive with India to New York City to tour the Plaza Hotel. India’s
favorite book and TV character is Eloise, who lives at the Plaza. India
had the time of her life, an ear-to-ear smile the entire time. This was
the first time India seemed like her old self in months.
The next day we flew home but
unfortunately, and as usual, we were facing more of the same from Veruca and a
much longer and tougher recovery for India than we thought.
Several days after returning, Veruca
tried to put India back in school, despite my vigorous protests and India’s
obvious physical state. Veruca did send her to school but it lasted only
one day. India spent the entire time asking her aide to hold her in her lap
because she was in so much pain. The aide couldn't give my
daughter this comfort because the school system said that it wasn't appropriate
for the aid, who is a woman, to hold my 42 pound daughter and comfort her; it
was a terrible day for India. Fortunately, India got to come home to me
that afternoon.
India returned to my home in very bad
shape. She’d not been stretched as directed by the doctor and as a result
was terribly stiff and in bad spirits. She began to have exceptionally
intense and painful contractures in her legs. The doctor who performed
the surgery on India had prescribed liquid Diazepam to control these
contractures. He told us to not hesitate to use this drug when India’s
contractures began. When I went to India’s medicine bag to get her the
Diazepam, it wasn’t there. I quickly contacted Veruca to ask about the
Diazepam; I assumed she forgot to send it over from her house. To my
horror, Veruca proceeded to inform me that she intentionally kept the Diazepam
and didn't want India using this necessary and prescribed
medication. After many attempts to gain access to the withheld
prescription, I was forced to call the police. After about 45 minutes,
the police arrived at my house with India’s Diazepam. The policeman let me know
me that Veruca was very difficult and angry that she had to give up our
daughter’s medication. He went on to say that he couldn't understand
why a mother would unilaterally withhold prescribed medication from her own
daughter. India had to endure several hours of needless pain because of her
mother’s personal beliefs, regardless of the impact on India; I was livid.
Because of Verucas past history of
neglecting our children, her aggressive desire to place India back in school
before she had healed from her 3 surgeries and now her refusal to provide our
child with the necessary medication, I was forced to bring in an officer of the
court. Fortunately, the court ordered that India was to spend every day
with me during her mother’s week every day so that Viktoria and I could care
for her. Veruca wasn’t happy about this and fought as hard as she could
but thankfully lost the battle.
India’s recovery was brutal. At
times, she was in extreme pain. She had bruises throughout her body where
the surgeries took place. The operation for her mouth caused a bad
reaction, which resulted in a nickel sized bright white hideously painful sore
that formed on the tip of her tongue, resulting in India not being able to
eat. Then India came down with a nasty virus that caused her to vomit every
time we were able to give her smallest bit of food or drink. And finally,
she began to have horrendous nosebleeds. The worst of which happened one
morning before dawn. When I went into India’s room to get her ready for
the day, she was laying in a puddle of blood. Her long beautiful blonde
hair was knotted in black and red congealed liquid. Her face was
completely covered, including her eye sockets. Her tongue was black from
the blood that pooled in her mouth. India’s ears were caked with the
drying fluid and both nostrils were totally blocked with black blood
clots. It was a gruesome sight. It had visibly shaken her as she began to
sob when I walked in the room, she grabbed onto me and said “Daddy” over and
over while she cried.
I picked India up and took her to my
bathroom to give her a long warm bath and get her cleaned up. When I
lowered India into the bath, the water instantly turned dark red. I had
to fill and drain the bath three times as the water would continually turn dark
red from the blood that came off her little body. It took us over an hour
to comb the blood clots out of her hair.
At one point while India was soaking,
I stood up, my reflection in the mirror caught my eye. I was covered in
blood; it was everywhere. My chest was still horribly bruised, deformed
and painful from my recent surgery. My skin that wasn't smeared with India’s
blood looked sickly pale. My body didn't look
familiar to me, it looked frail and old; I’d lost over 22 pounds in the
previous 6 weeks. As I stood there staring at myself in the mirror, my eyes
began to fill with tears. I tried to hold back the emotion but it was useless,
I began to weep. Then I began sobbing, I sat on the floor with my head in my
hands, tears rolling down my cheeks as weeks, months, and years of pain,
despair, empathy and anger came tumbling out from deep inside me.
At that moment, as I sat there looking
at my tears dropping onto the tile floor, I realized they were bright red. My
tears were mixing with India’s blood that was smeared all over my face.
I will use the words utter despair and
absolute horror to try and describe that moment. But in all reality, I can’t accurately
convey the emotions I was experiencing and I don’t believe I ever will be able
to. For me, just writing this story has
been exhausting and taken me over 2 years to complete.
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