We were home again after another
viciously traumatic seizure, walking on eggshells and praying that this episode
would be the last. We watched India constantly, looking for any sign of
damage. After several weeks, we began to relax, realizing that she was no
worse for the wear and just needed time to recoup her strength and stamina.
We knew that we had to make India
stronger, healthier and as far away from seizures and illness as
possible. We dove back into our routine of frequent intensive
therapies. My wife would take India out of state for 3-5 week periods up
to 5 times a year to participate in intensive physical therapy programs, each
costing up to $2,500.00 per week. While they were away, I always made sure my
wife and daughter stayed at the best hotels possible and lacked for
nothing. During this period, Dementor was duped into believing that
India’s brain would somehow ‘recover’ if she slept under a powerful magnet
overnight at a special facility in Michigan. This ‘treatment’ cost an
additional $7,500.00 a week. I was minting money at the time and I was
desperate to help India so I didn’t question a thing.
When Dementor wasn’t away with India,
we were commissioning Conductive Education teachers from Budapest, Hungary to
come stay at our home for a month at a time to work with India. These
teachers were incredible; they seemed to achieve things with India I never
thought would be possible. I’d walk in one evening and India would be
sitting at the table on a chair, feeding herself dinner. I assumed before
that India would never be able to feed herself. The next evening she’d be
walking out of the room stepping, and loudly singing while the teacher was
holding her arms, it was amazing. Unfortunately, I was always working so
I didn’t find out how this was all happening. As it later
turned out, this would have been very valuable for me to have learned and
understood. Nevertheless, I had to come up with tens of thousands a month
so that I could pay for the therapies, the cost of the Conductive Education
teachers and whatever other therapies Dementor came up with (see the list in
the previous chapter).
I believed we were providing India
with everything she needed and beyond. We were too afraid to allow any
significant gaps in her therapy routine because when we did that in the past,
she’d regress at an alarming rate. I thought that the excessive amount of
therapies India was doing was an absolute necessity and that we were doing the
best we could. I took pride in being able to come up with the costs
of this odd therapy-lifestyle, which by the year 2008 had reached over a
million dollars.
I also felt that I was supporting Dementor
as best I could. During or after an extended period away from home, Dementor
would want a break. So off she’d go to Cabo San Lucas, San Francisco
or Las Vegas while I put my work on the backburner so that I could watch one or
both of our children. This was something that I questioned in my own
mind, as her time away with India wasn’t necessarily stressful or strenuous, it
was for the most part quite the opposite. But I went along with her
wishes.
As will be with life, everything
changed in the blink of an eye. It started with my business. Major
transactions that I’d put together began to disintegrate rapidly. I
watched as my “cash cow” walked off into the sunset. Meanwhile, there I
stood with not only my general business overhead, home budget requirements but
also a $10,000.00 to $20,000.00 per month tab for all that India was being
provided. I was terrified. To be honest, the thought of losing all
my material things and the hit that my ego was about to take wasn’t very
pleasant. But what really turned my world upside down was thought of the
potential impact on India.
Dementor and I had come up with a
backup plan in the event that just this type of situation came to
fruition. Earlier in India’s life, Dementor and I agreed that she would
be in charge of all therapies and I’d be in charge of coming up with the money
to pay for them. She would not only make sure that India attended the
best facilities and worked with top notch specialists on an ongoing basis but
she would learn the how and what to do in the event our cash flow was
interrupted for whatever reason and we could no longer afford paid
services. We purchased tens of thousands of dollars’ worth of equipment for
our home, much of it the very same that was used in the professional
facilities. Dementor compiled reams of printed and illustrated
instructions from the physical therapy camps showing how to do the essential
daily stretches and exercises. She was trained and certified in Yoga
for children with disabilities. She attended an “augmentative and alternative
communication” conference, which gave her a mountain of knowledge that she
could use with our daughter. Dementor spent weeks upon weeks with the
Conductive Education teachers who taught her literally everything about what
would benefit India. Dementor went as far as videotaping dozens of
hours worth of footage during the therapy and Conductive Education camps to use
as visual instructions at a later date.
So here we were, preparing to initiate
our backup plan for India’s care as we helplessly watched what was eventually
going to be called “The Great Recession” change our lives forever. I made an
attempt in vein to swim against the current and save what I could. I
began to work ungodly hours, which kept me away from home for the better part
of each day. It was during this time that things under my roof became
unrecognizable, a living nightmare.
India began to have serious chronic
pain for the first time and it came on fast. I would have to get up in
the middle of the night on a regular basis to comfort her, usually with a leg
massage, then a long snuggle until she fell asleep. Then I’d have to get
up about 6:00 am, bathe, dress and feed India, get her on the bus and get
myself to work for another long day. Dementor rarely helped in the
mornings, she was a night owl and liked sleep in.
India’s pain progressively got worse,
her arms and legs began to stiffen terribly and now there was a new problem
that I had to wrap my head around. When I’d come home at night, India
would be on the couch with the TV on. When
she’d see me, she’d start giggling and crying at the same time, seemingly
frantic for my help. Often when I’d arrive, she’d not only be soiled but our
couch would be soaked with urine. To my surprise, when I asked Dementor
what was going on, she told me to mind my own business, she was in charge of
the home and I was in charge of work. The day after I’d asked Dementor
what was going on, India still was on the couch frantic and soiled. The
only difference now was that Dementor kept several folded towels under her to
soak up the urine.
It’s hard for me to describe the fear,
panic and helplessness that I was feeling now. Earlier that year, I
was on top of the world, providing my daughter with absolutely everything I
possibly could. Now, I was watching everything fall apart, including my
child’s little body. And to make matters worse, there were so many things
happening that I didn’t understand.
Early one morning, well before the sun
had come up, India called for me. She was in pain again and needed my
help. I gave her a massage, we snuggled and she eventually went back to
sleep. Afterwards, I wandered around the house aimlessly. I
eventually ended up in the room where we’d give India most of her
therapy. I sat down at one of the tables to reflect on everything that
had been happening, that’s when I noticed it. The tens of thousands of
dollars’ worth of therapy equipment that we’d stockpiled for our child’s use
had not been used. What gave it away was a thick layer of dust
covering literally everything. I sat there in disbelief with what I was
seeing, there had to be an explanation.
I began to go through the house, room
by room with my eyes wide open for the first time in years. I found
pieces of a “communication book” in the garage that India was supposed to be
using. I realized this was the communication book (a book filled
with picture symbols that would’ve allowed India to converse with people) that Dementor
started making several years ago; it had never been
finished! We had spent thousands of dollars on the software to
assemble this book and had sent Dementor to a conference so that she could
understand how best to integrate communication methods into India’s
life. It hit me that Dementor hadn’t bothered to provide our
daughter with this means of communication, but why? She had all the
money, knowledge, equipment and time to be able to do so!
Then I remembered India’s computer, it
dawned on me that I never actually witnessed her using it. When I took a
close look at the computer, it was the same as with the therapy equipment,
completely unused. This computer had a specialized keyboard and joystick
so India could operate it. This device was meant to help open up
the world of communication and education for India. What the hell was
going on? This is a helpless little girl who relies on our help!
As I looked further, I found
more. There were unopened, factory sealed hip abduction “Swash” devices
in a range of sizes; I purchased each for over a thousand dollars and their use
was critical. India was supposed to wear these often to prevent the
malformation of her hips. All of a sudden, it became painfully clear to me
why my little girl was in chronic pain. I stood there as the sky began to
lighten with the coming sunrise in complete disbelief and shock.
You see, both Dementor and I knew
better, we understood the terrible consequences of inaction with India; we’d
seen first hand how quickly she’d backslide. We were painfully aware that
when someone has cerebral palsy and doesn’t weight-bear on their legs and keeps
their legs crossed all the time, their hip joints never develop properly.
This, over a relatively short period of time can and will cause painful hip
dislocation. This is the horrible side effect of not moving
enough. We knew that India’s hips had already started showing
serious signs of dislocation and deformation. As a matter of fact, to
this day I still have the x-rays showing India’s hips beginning to dislocate
and clear signs of deformity. This is exactly why I purchased the
equipment, to help prevent my child’s hips from getting worse and her little
body experiencing terrible pain. This is why I sent Dementor and India to
the high-cost therapy camps where she would stand and walk for hours on
end. We knew what had to be done and up to this point, I thought that we
both had dedicated our lives to this little girl.
Despite our agreement and exhaustive
preparation, Dementor never used the equipment I purchased or the extensive
training she received. She did virtually nothing for her own child once
the recession reared its ugly head. I was incredibly blind and naïve, I
trusted Dementor so much that I didn’t see what was in front of my own eyes,
but all was so clear to me now.
Dementor was a stay-at home mom, a
kept woman. She had no other job or responsibilities in her life but to
take a good care of our children and to make sure they did well. I have
to mention that we had a maid up to three times a week so Dementor didn’t have
to clean, we ate out at least 4 times a week and we had plenty of child care; Dementor
wasn’t in danger of having to do too much.
When she’d take India to a therapy in
or out of state, it wasn’t a difficult task at all. She would only have
to make sure India arrived on time and was picked up when the sessions were
done. After that it was a plethora of shopping, fine dining and other
exciting adventures, I have the receipts to prove it. Because of Dementors
extensive travels with India, we were Platinum Preferred Guests with Westin
Hotels, Platinum Card Holders for Marriott Hotels and had built up enough
American Express points so that we could fly to most destinations around the
world for free.
You see, Dementor had a tendency to
pontificate on occasion, well that’s not exactly true, she’d step up to the
pulpit pretty much every day. But up until now, I thought she knew
what she was talking about and that she’d do anything for our child. Now
I was realizing that Dementor’s continual orations about her deep and profound
knowledge of what our daughter needed were just absolute bullshit. I’d
always know she had chronic verbal diarrhea and I often wanted to put a diaper
on her mouth to stop the flow. But until now, I followed her
blindly. And now I was realizing that my unquestioning and passive
support of Dementor had lead to the preventable, dismal state my daughter was
in.
Here was a woman, the mother of my
children, who put forth to the world that she was the ultimate authority as to
what our daughter and other children with disabilities needed. She’d
constantly tell other parents what was best for their children. She’d
always painted the picture to the masses that she was working her fingers to the
bone, sacrificing her body and soul for our daughters benefit. And what I
was now grasping was that she was just plain lazy. So long as it was
nice hotels, new cars, unlimited lines of credit, daily shopping and fine
dining, she was as happy as a pig in shit. So long as we could pay for
others to do the hard physical and mentally draining work with India, Dementor
was super-mom.
But as I found out, the minute our
coffers went dry and hired help went away, Dementor retreated to the bedroom
where she’d engulf herself into mind numbing activities, leaving Harriett to
her own devices and India to sit in her own waste. Dementor wasn’t
super-mom; she wasn’t even a good mom. As a result of Dementors actions
leading to this point and her subsequent actions, I’ve come to the concrete
understanding that Dementor is a lost, insecure, mentally ill woman who won’t
think twice to hurt her own children if it suits her own agenda. We’ll
talk about this more in the next chapter.
I’ve always looked at the world and
the people in it as an endless space with uncountable bubbles. Within
each bubble is a family, group, person or environment. Enlightened people
understand that each bubble is different, some healthy, some not, they can jump
from bubble to bubble as they please, living a happy and healthy
existence. Some people forget that there are other, happier, healthier
bubbles out there that they can jump into, leaving their toxic bubble
behind. Because I’d been so caught up in the care of India as well as
coming from a very damaged background, not understanding boundaries and what
the definition of healthy was, I’d not known that my bubble had become the
Chernobyl of all bubbles; I was withering away along with my children.
Because of the toxicity of my
environment, friends and family kept their distance during my marriage to Dementor.
It happened slowly over a period without me realizing it. People
would bite their tongues and keep their input and opinions to themselves.
But when I did exit bubble Chernobyl, I was overwhelmed with information from
those who had kept their tongues in check all those years.
When I found all the dusty and
unopened equipment, I already had a good idea of what was, or wasn’t going
on. Then I was given some jaw dropping information from a friend, a
former roommate who was staying with us for a few months. He told me what
I already suspected. Dementor had been placing India on the couch early in the
morning on no school days and leaving her there all day long, helpless, in
front of the television. She’d do the same to her after school. Dementor
would only come out from her bedroom on occasion to hand her a bottle of water
or a hastily put together meal. When I heard this, I felt like the USS
Enterprise of Star Trek when it comes out of warp drive to an abrupt
stop. I sat there, nothing else in my mind, complete moment of
clarity. I now understood why India would be frantic when I’d come home
from work to find her in shambles on the couch; she was being neglected.
Then my heart began to pound. India’s increasing pain that kept both she
and I up at night wasn’t from growing pains as her mother told everybody, she
was in pain because her mother not only wasn’t doing the necessary stretching
and therapies but she was attempting to hide her actions or lack of!
I felt sick to my stomach as my old
friend detailed everything he witnessed. I pulled my knees to my chest
and tried to absorb what I was hearing. My friend went on to tell me that
he felt huge remorse for not coming to me sooner but he was afraid of the
backlash from Dementor. I’d always known Dementor was intense but this
was one of the first times that I realized that people were actually afraid of
her. So there I sat, listening to my friend who by the way was a reformed
career professional bank robber who’d spent over 12 years in prison tell me he
was afraid of my soon to be ex-wife. I was still trying to push away the
realization that this woman, who I’d put all my faith and trust in had abused
India. I was trying to wrap my head around the foreign concept that a
mother could do this to her own daughter. I was shaken to the core of my
soul and to this day, I still have a hard time with this.
The next revelation I had involved Dementor
and India’s younger sister, Harriett. I’d noticed that if I came home for
whatever reason in the late morning or early afternoon, Harriett would always
be in her pajamas, just her underwear or sometimes naked, regularly snacking on
a dry block of Ramen noodles. Dementor was always in the other room
sleeping, watching TV or playing video games. You see, two years earlier,
we made the decision to home school Harriett. Because of all the
traveling we were doing with India and the bad experience we had with the local
public school system, home schooling seemed like a great idea. Turns out,
Harriett, at the age of 8, was left on her own to do as she pleased while I was
away from the home. She had been completely neglected and was left to be
raised by the wolves, no parental guidance whatsoever.
As with India, I was given the entire
story by somebody who’d spent an extended period with us in our home. My
brother had lived with us for many months and also graphically detailed what
he’d witnessed take place with my daughters. He went further than my
bank-robbing roommate in his descriptions on the goings on within my
household. His words hit me like a ton of bricks. It’s true that
I’d rarely seen Harriett doing any schoolwork whatsoever, but now my stomach
started sinking as my brother described the absolute anarchy of her life.
From the time Harriett got up until late afternoon, she was left to her own
devices. She’d feed herself dry noodles from the pantry, would rarely eat
anything else, she wouldn’t bathe; she’d just entertain herself and do as she
pleased. The short study periods with mom were generally limited to mom
coming out of her bedroom and instructing Harriett “do your homework”, but
Harriett struggled doing anything because she never got any sort of instruction
and guidance. I can only speculate that when Dementor realized
homeschooling was just too hard for her and/or she didn’t feel like doing it,
is when she passed the job off to my office manager or our maid from
Mexico. Occasionally Dementor would even have the professionals who
we hired for India at great expense from Hungary do Harriett’s home school work
with her. These professionals told me years later that they wouldn’t know
what to do when Dementor instructed Harriett to write 10 sentences about a
topic and then she went back to her bedroom; only for the teacher to realize
that Harriett didn’t know the alphabet and couldn’t even spell her own
name. One of the teachers ventured to ask Dementor what happens in the
state of New Mexico if a home-schooled child doesn’t advance in academics with
the required pace; in Europe the authorities put the child back to school but
unfortunately this is not the case in our state. Dementor was free to
leave Harriett completely uneducated.
Until this very day, as I write this
chapter, I’ve continually been contacted by teachers, administrators,
therapists, old employees, family, friends, counselors, doctors, attorneys and
on and on and on who all have blood curdling stories about Dementor; I was
oblivious to who she was, the damage she caused and how she was perceived.
As you might remember in a previous
chapter, Dementor and I were both horrified when a teacher abused India by
neglect just a few years before. Now it had come to light that Dementor
was doing the same to both of her OWN CHILDREN. I did try to talk to Dementor
about what she was or was not doing but to no avail. She dismissed me
every time and told me “you don’t know what you’re talking about” or “mind your
own fucking business”. My relationship with Dementor had become
progressively worse and worse to the point where it was now a very dark and
lonely place. I couldn’t continue living with her.
In the fall of 2008, I decided to move
out and separated from my wife of 12 years. The decision wasn’t
difficult; it was actually a huge relief. In my mind, I’d move into my
own house, clear my head, have the children every other week and spend as much
time with them as I could. I would work on undoing the damage Dementor
inflicted upon my children. What I didn’t count on was the
incomprehensible deep seeded destructive anger of Dementor that was to come.
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