Monday, September 5, 2011

Our Day in Hell Part 4 "Feed Me".

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.