Sunday, October 30, 2011

Chapter 10: - Slippery Slope

During India’s 11th year, she began to show signs of chronic hip pain.  We could visibly see that both of India’s hips were dislocated.  All of the activities that she’d loved were becoming more and more difficult to do.  Her condition became progressively worse over the next twenty-four months.

The fact that India was going downhill was in sharp contrast with the fact that up until the year 2008 I did nothing else but pay exorbitant amounts of money for more therapies than I could count.  Veruca regularly took India to Detroit for intensive physical therapy for weeks on end at a time, several times a year.  We spent a year in Canada in a conductive education camp and we employed several of these teachers privately to work with India at home.  What was missing?  Why did India develop complications of inactivity?

I will never forgive myself that I didn’t see through Veruca’s conduct until it was too late and India’s chronic pain couldn’t be avoided any more.  During our marriage I was so blindly trusting Veruca, I was so sure that she was doing the best possible research into therapies, interventions and what was best for India, that I couldn’t see how abnormal Veruca’s approach to India had become.  Back then I didn’t know that nobody takes their child to $2500 a week intensive therapy programs for 4 months out of a year, only we did that.  Instead, parents are supposed to learn the techniques during the 2-3 week therapy camp and once video, written and verbal instructions given, the average, regular parent would incorporate the stretches and exercises into their child’s routine every day.  For Veruca, who was a stay at home mom with a maid and respite care at hand, this would have been a breeze.  But Veruca always found an explanation why she was “relaxing” in front of the TV and the computer the whole day, every day instead of making sure India got off the couch and did something just for a short while. What I didn’t realize until it was too late was that Veruca completely passed over the job of raising our daughter to therapists and teachers, and while she would occasionally change India’s diaper—later not even that—she explained to herself that a parent is not supposed to do anything with or spend any time with their disabled child, because that’s what the “experts” are for.  Once back from the therapy camp, India did absolutely nothing for a couple of months until the next therapy camp, and once we couldn’t afford the therapy camps, India did absolutely nothing any more whatsoever.  With a mother like hers, India’s only chance to avoid the pain of dislocated hips would have been to permanently move into a therapy camp.

There is, of course, no reason for a disabled child to move into a therapy camp for good.  Mothers other than Veruca understand their role as a parent and make sure their child has a childhood, a fun but active childhood with or without disability.  I have to explain here that India did have another lifeline, and this other lifeline wasn’t constant therapy, wasn’t even frequent therapy: the conductive education teachers we employed gave plenty of reasonable and outright fantastic advice about how to raise India for her to become an active person who’s willing to try and help herself.  For example, India didn’t have to be forced to practice walking at home like she was in the therapy camps.  Instead, the teachers taught Veruca how to get India active throughout her day using really simple and common sense measures:  for India to get out of the wheelchair and walk to the door when the school bus drops her off; walk with India in the garden and look at the bunnies, etc., etc.  As the conductive education teachers explain, this is not therapy, this is just life.  There was never a need for the excessive therapy camps, India could have just lived her life as one of those disabled children who uses a walker at home to get from point A to point B, and the regular, daily activity—standing, walking, weight bearing—could have contributed to prevent the terrible deformity India developed in her hips. 

India was going downhill simply because she wasn’t upright enough throughout her life.  No therapy in the world is enough for a disabled to be upright enough, and being up and doing things doesn’t have to be therapy.  The great effort and expense I put into bring in the teachers to explain this to Veruca went down the drain because according to Veruca, this was all bullshit.

Well of course it was.  Assisting India to walk to the house from the bus—an approximately 50 foot distance—would have taken at least half an hour of Veruca’s time every day to spend with her daughter.  There was no way for Veruca to spend all that time, or God forbid more than that, away from the TV or her computer games.  As long as India’s “care” consisted of Veruca to get out of town, live in luxury hotels, drop India off at therapy and have someone else do the job, she supported the idea of India being active.  Once the activity meant that Veruca was supposed to assist India at home in any way, she deemed it all bullshit.  It was completely my fault that I didn’t see this, and when I finally did, in the year 2008, we were in the middle of the recession and India’s hips were already grotesquely destroyed for good.

I moved in with my second wife, Viktoria in the summer of 2009.  Viktoria and I did everything we could to prevent the problem from accelerating, but once India slid down the slippery slope, there was no way to climb back.  It added to the problem that I only had 50% of custody time week on week off, so when India was in her mother’s custody, she remained in her chair or on the couch as usual for the entire week.

India started middle school in August 2010 and this meant that we put her into her wheelchair at 8 in the morning and took her out of there at 4 in the afternoon.  She did spend a little time on the floor on a mattress every day and she did have some minimal amount of physical therapy every week at school, but that didn’t come close to India’s need of being up and active, using her body and weight-bearing on a daily basis.  A few months into school she started complaining of hip pain, and by December she was crying the whole afternoon, every day at school because she was in so much pain.  She was begging staff to take her out of her wheelchair and she wanted her aide to hold her in her lap, but such measures were against school “policies” and there were never two adults available to lift India out of her chair. 

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 hand saying “owie daddy – help me”. 

We visited India’s  local Pediatric Orthopedic Surgeon.  She had multiple x-rays taken and the results were chilling.  The tops of India’s femurs had grown almost 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 Orthopedic Surgeon prescribed pain killers, and 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 soft tissue  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 there was no guarantee that the pain would be gone. . 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 truly believed that there must be something else, another option; we decided to ask for a second opinion.  Taking India to a different doctor in the area would not have made too much sense, as India’s condition is relatively rare in our not very densely populated state.  I was sure our area is not where the most highly educated and experienced doctors are hiding out.  Viktoria and I did a massive amount of research to find  the finest physicians out there,  and we came to the conclusion that the greatest experts in pediatric orthopedics were located on the east coast of the United States.

Once I found the exact physician whose credentials, published material and reputation on parents’ forums all suggested that he must be our guy, I immediately called to set up an appointment and arranged for him to meet India.  India and I flew across the country to meet with this cutting edge physician and his team and get the long yearned second opinion.  . The team  suggested 2 different  procedures that were relatively non-invasive and outpatient.  One of the procedures was lengthening India’s tendons at several areas in her legs to stop her stiff muscles from constantly make her bend curl up; the other procedure was to kill one the nerve that was signaling the horrible pain to her brain using ethanol.  These altogether sounded nothing like sawing away bones, so I booked  India’s surgeries on the spot for the following month.