Our Day In Hell Part 7 - Life Flight

India had a couple of really good years after my “come to Jesus” talk with the school.  It’s not that she managed to learn much at school either academically or regarding her physical skills, but she was loved, appreciated, and included in everything.  She learned to be a master manipulator; charming everyone with smiles and refining ways to avoid work.  She learned to drive her power chair by herself and she became a total celebrity at school.  In the meantime, we pulled her out of school a couple of times a year to participate in intensive physical therapy (4 hours a day) in Detroit, Michigan. She thrived as a result of the intense physical activity.  Our spirits were high as she made huge strides physically, cognitively, and emotionally.  The rewards of seeing a disabled child, your own disabled child thrive, are huge.  The only thing I can possibly compare it to is the feeling performers describe when they are in front of thousands of cheering fans.  But like in the past, our world came crashing down upon us yet again.

In August of 2004 I was in my office with two co-workers planning some new projects.  I was feeling very refreshed and happy, we’d just returned for a great vacation to San Diego, Disneyland, and Santa Monica.  It was a great getaway, probably one of the best we’d ever had as a family.  Now that we were home, we were settling back into our daily routines. Veruca, India, and Harriett were at the girls’ piano lessons.  They received lessons once a week from a really neat old guy who lived about twenty minutes north of town. Veruca regularly called me during the girls’ piano lessons so that I could hear them play.  As I sat at the planning table in my office, Veruca called.  I assumed she was calling to let me listen to the girls play or tell me about the session.  I was wrong.

I answered the phone but before I could say hello, Veruca said, “India is having a massive seizure, it’s bad, really bad.”  Up to this point India hadn’t had a seizure that we’d known of since she was a baby; we thought we were past this.  Veruca went on to say she was at least twenty minutes away from the hospital, what should she do?  By this point, I’d jumped out of my seat and was running to my vehicle. I told Veruca to go to the hospital as fast as she could, don’t stop for any reason.  I told her to stay on the line with me, don’t hang up.

I arrived at the hospital within ten minutes of receiving the call from my wife.  I raced into the emergency room and got the head nurse up to speed on what was happening, all the while listening to what was taking place in Veruca’ vehicle.  To my horror, just as I finished talking to the head nurse, , my wife’s voice raised several octaves as she screamed, “Oh my God, she’s stopped breathing!”  I could hear India’s little sister in the background saying, “Kake up India, wake up, please sissy!”  It was a horribly cold and helpless feeling as I listened to Veruca crying, calling out to India to breath, her little sister pleading for her to wake up.  All I could do was stand there and listen.  Then Veruca started to scream, “Oh my God, oh my God, there’s foam coming out of her mouth, there’s blood.”  I told Veruca to keep driving as fast as she could, and I did my best to speak to her in a calm voice, but I was panicking inside.  Here was my little girl, seizing, not breathing, with foam and blood coming out of her mouth and my wife was still five minutes away from the hospital.

Standing at the emergency room ambulance bay door with the head nurse, my stepfather came running up. Somebody had called him.  The relief I felt when he came up and put his hand on my shoulder was a lifesaver for me: I wasn’t alone anymore.  He could hear Veruca crying on the phone, honking at cars to get out of her way.  She screamed that she was stuck at a light with a bunch of traffic.  I told her to start honking the horn, pull up on the sidewalk to get around the traffic, and run the red light.  At this point I could hear the horn from Verucas’ car; she was close.

As she raced up to the awaiting medical team, I ran to the back door to get India out.  To my horror, when I opened the door, my little girl was white and her lips were blue.  There was a thick mixture of foam, vomit, and blood running down her chin onto her chest.  India’s eyes were rolled back into her head, her legs and toes were pointed straight down, and her arms were rigid in the “Archers Position,” as a slow rhythmic beat pulsated through her little body.  India’s little sister’s eyes were as wide a saucers, and tears were running down her face. She said to me “Daddy, India won’t wake up, she’s sick!”

The medical team rushed my daughter into a waiting triage room and began working on restoring her breathing and getting the seizures under control.  Immediately, the doctor ordered a dose of anti-seizure medication but it didn’t work, she was still seizing.  The doctor then ordered another higher dose, and this didn’t work either.  Then the doctor pulled out a very powerful anti-seizure medication and began to calculate the dose based on my child’s weight and age.  By this point, my stepfather had entered the room with Veruca and overheard the doctor’s calculations.  My stepfather looked at the doctor, alarmed, and said “Your  math is wrong.”  The doctor took offense to this and said she knew what she was doing.  Fortunately, one of the nurses overheard what my stepfather had said and double-checked the dose.  The nurse then grabbed the doctor’s arm and said that she’d miscalculated the dose and would kill this little girl if she gave it to her.  Another nurse then double checked the first two injection quantities given to my daughter and said that they had been miscalculated as well.  My daughter had been overdosed and was in jeopardy of having her entire system shut down.

Horrified, I stood there as the head nurse pushed the doctor out of the way and began to take preventative measures.  The doctor was clearly flustered; she had no idea what to do, she was incompetent.  I grabbed one of the nurses, made her look me in the eye and asked if there was a better hospital for my daughter to be at right now.  Everybody in the room was quiet as I repeated myself.  The nurse looked around said, “This little girl needs to be at University of New Mexico Hospital Pediatric Unit in Albuquerque, we’re not equipped for this.”  I spun around to look at the head nurse and said that I wanted my little girl on “Life Flight” immediately to get her to Albuquerque, 240 miles away, as quickly as possible.  The head nurse nodded her head, made a call, and began to prep my daughter for the flight.

The emergency aircraft was too small for all of us to come along so we decided that mom would go in the airplane while I drove our youngest daughter up to Albuquerque to meet them.  As they were putting my daughter in the ambulance to transport her to the waiting aircraft, I jumped in my vehicle and headed north, only stopping to fill up the gas tank.  It was a long drive and I spent most of the time fielding questions from my youngest daughter about what had happened because she was traumatized.  All the while, I was out of communication with Veruca. I didn’t know if India was alive or dead and it was a living nightmare.

When I arrived at the hospital in Albuquerque, I found my wife in tears and my daughter on life support.  I was reliving the horror of what we experienced when she was hospitalized as an infant.  I stood there looking at my little girl who’d been so healthy just hours before not to mention all the progress she’d made over the past few years.  Would this seizure cause more brain damage?  Would she lose all that she’d gained?  Would she survive this? Would she be a vegetable?

There I was again, sitting next to my baby girl 24 hours a day, praying and hoping for the best.  I held her little hand, talking and singing to her in the hopes she could hear me and know I was there.  There are no words that can explain how I was feeling and I hope you never have to be in this position, whoever you are.

The doctors took my daughter off of life support about two days after we first arrived.  India was still non-responsive and the doctors were very hesitant to say if she would be ok or not; it was a waiting game.  Somehow, I had gotten my hands on a cute little stuffed bluebird.  I kept it next to India on her bed along with some other stuffed animals.  Hospitals are such sanitized, depressing places; I wanted some life and color around my child.

Late on the third day I was sitting next to India when she started to move.  I jumped up and started talking to her, trying to get a response.  She was clearly confused but I didn’t know if that was from massive brain damage or just her waking up after being under for three days.  I kept talking to her, even sang a song and she just blankly looked around the room. I was devastated.  I began to weep, my forehead on hers, all I could say is “I’m sorry, I’m so sorry.”   I lifted my head, picked up the bluebird, and held it over to my daughter.  Crying, I told her, “Look what I got you, baby girl, what color is it?” Before this seizure, she was able to identify and verbalize many of the basic colors.  I asked her several more times what color the bird was but she was just staring up at the ceiling with an endless gaze.  My world was crumbling to the ground and I was devastated.  I leaned over, kissed her on the forehead, placed the bluebird on her chest, and turned to go give Veruca the bad news.  I stood there for a moment, wondering how the hell I was going to tell her mother that India had lost her mental facilities, she was a vegetable.

Just as I began to walk out of the room, I heard India’s little voice say Bblue.”  I spun around to see her looking at me and ran back to her bedside just in time for her to say “blue” again.  I started crying, stroking her cheek, telling my baby girl how much I loved her and welcome back.  I held up the stuffed bluebird and this time India gave a small smile and said “blue.” I felt an unworldly sense of relief.  I lifted her up and held her in my arms, thankful that she was responsive.

It would still remain to be seen if she’d fully recover but for now, I was a happy father with my beautiful daughter.

* Here is list of what India participated in an 11 year period.  I now know that some of these were a bad choice and a waste of time for my daughter and my family, but I didn’t know anything at that time, I was just holding out hope and accepted it from everyone who offered it.  While not all items on this list are wise choices, all of them got here out of love and devotion for my daughter.

The Advanced Magnetic Research Institute “AMRI”: Michigan (provides treatments for a variety of disorders using a new device, the MME (Magnetic Molecular Energizer) which is similar to an MRI scanner). EXTREMELY EXPENSIVE – SIMPLISTIC THEORY – NO RESULTS WHATSOEVER.

Hippo Therapy: New Mexico (promotes the use of the movement of the horse as a treatment strategy in physical, occupational and speech-language therapy sessions for people living with disabilities).  AFFORDABLE – MAKES SENSE, IT’S AN ACTIVITY – FUN.

Euro-Peds: Michigan (Unique and intense physical therapy treatment for children with Neuromotor disorders). EXTREMELY EXPENSIVE – WORKS GREAT AS IT IS PHYSICAL THERAPY IN A LARGE QUANTITY.

Massage Therapy: Canada, Michigan, New Mexico and California. PRICE VARIES – RELAXES HER AND MAKES HER FEEL GOOD.

Chiropractic Treatments: Canada, Michigan, New Mexico and California. PRICE VARIES –INDIA ENJOYS IT, MIGHT HELP A BIT, CAN BE DANGEROUS.

Physical Therapy: Michigan and New Mexico EXTREMELY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, HAVE TO HAVE IT REGULARLY.

Occupational Therapy:  New Mexico EXTREMELY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, HAVE TO HAVE IT REGULARLY.

Recreational Therapy:  New Mexico and California AFFORDABLE – GREAT FUN.

Speech and Language Pathology:  New Mexico and Arizona (Speech-language pathologists work with people who cannot produce speech sounds or cannot produce them clearly) TERRIBLY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, SHOULD HAVE IT ALL THE TIME.

Sensory Integration: New Mexico CAN BE AFFORDABLE – NOT SURE ABOUT THE RESULTS, BUT FUN.

Behavioral Therapy: New Mexico CHEAP – EXCELLENT RESULTS.

Swim Therapy: New Mexico CHEAP – EXCELLENT RESULTS, GREAT ACTIVITY  And GREAT FUN.

Music Therapy: New Mexico CHEAP – GREAT FUN.

Craniosacral Therapy: New Mexico, Michigan, California (A Craniosacral Therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the Craniosacral System. The practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia. In this way, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spinal cord is said to be optimized, and misaligned bones are said to be restored to their proper position).  EXPENSIVE – NO RESULTS WHATSOEVER.

Rolfing: New Mexico, Michigan, Colorado and California (is a system of connective tissue manipulation based on the theory that rebalancing and realigning the body with the earth's gravitational force results in more energy, increased breathing capacity, and alleviation of chronic pain.) EXPENSIVE – NOT SURE WHAT’S THE POINT – PT DOES THIS ANYWAY.

Yoga: New Mexico and Illinois CHEAP - GOOD RESULTS.

Botox: New Mexico (Botox injection benefits include ease in stretching, improvement in child’s range of motion, tolerance to wearing braces and developmental improvements in crawling, standing, or gait changes) AFFORDABLE – FIRST IT WORKED, LATER IT DIDN’T (AS STANDARD).

Feldenkrais Method: New Mexico (the Feldenkrais method is designed to improve movement repertoire, aiming to expand and refine the use of the self through awareness, in order to reduce pain or limitations in movement, and promote general well-being), EXPENSIVE – NO RESULTS WHATSOEVER – REGULAR PT WITH A GOOD THERAPIST IS WAY BETTER.

Hyperbaric Chamber: Canada (HBO therapy is a medical treatment that uses the administration of 100 percent oxygen at controlled pressure (greater than sea level) for a prescribed amount of time—usually 60 to 90 minutes). TERRIBLY EXPENSIVE – NO RESULTS WHATSOEVER.

Orthopedic Surgery: New Mexico (Soft tissue lengthening) TERRIBLY EXPENSIVE WITHOUT INSURANCE – WE’VE DONE IT TOO EARLY, AS WE DIDN’T KNOW ANY BETTER AT THE TIME.

Conductive Education, New Mexico, Canada, California and Colorado. AFFORDABLE, NOT A THERAPY – REQUIRES APPROACH AND LIFESTYLE CHANGES BUT IT TOOK YEARS TO UNDERSTAND WHY AND HOW.  IF I UNDERSTOOD THE IMPORTANCE AND EFFECT OF SIMPLE LIFESTYLE AND ROUTINE CHANGES FROM THE BEGINNING, I COULD HAVE GONE SPENDING THE MONEY AND EFFORT I PUT INTO USELESS THERAPIES INTO FAMILY VACATIONS OR SOME OTHER USEFUL THING, AND INDIA WOULD HAVE ENDED UP AT A MUCH BETTER PLACE PHYSICALLY, COGNITIVELY AND EMOTIONALLY

India also attended some wonderful camps for children with disabilities. 

Camp at the Bay: San Diego, California (Summer camp for children with disabilities, includes: jet skiing, water skiing, tubing, sailing, kayaking, baseball, swimming, ball games, cycling and hand cycling).

Camp Wet and Wild: San Diego, California (Summer camp for children with disabilities, includes: kayaking, snorkeling, surfing, crafts, special exhibits and field trips).  BOTH OF THESE ARE AWESOME, AWESOME, AWESOME FUN, GREAT ACTIVITIES.

SAzU Pine Canyon Camp: Arizona (Mountain Cabin camp for children with disabilities).

Neil Young’s’ “The Bridge School” AAC by the Bay: Hillsborough, California (Provides a summer camp experience for people with complex communication needs).http://donniebrainard.blogspot.com/2010/04/our-day-in-hell-part-1.htmlhttp://donniebrainard.blogspot.com/2010/04/picu-our-day-in-hell-part-2.html

Our Day In Hell Part 6 – A Come To Jesus Talk

India has always attended public school with the only exception being when she was away for therapy.  We’d always wanted to give her the opportunity to learn as much as she was capable of and have lots of social interaction with other children.  We’ve experienced many highs and almost as many lows with the New Mexico school system,  fften finding ourselves having to deal with the red tape and battling the mind-numbing bureaucracy and its tenured minions.  At the same time, we’d encourage and if possible reward the positive aspects of the system.  This was a full time job, not for the faint of heart. There was an event that will haunt me for the rest of my life.  It was one of the few times in my life that I actually felt violent and wanted to inflict harm on another human being.

We placed India in an old and relatively small elementary school in the town of Mesilla, New Mexico.  The surroundings were beautiful, with thousands of Pecan trees surrounding the campus and the historic Rio Grande River flowing just west of the school.  A couple of minutes to the north was the jail where Billy the Kid was kept after he was caught for the last time.

At first all seemed fine—it took some adjustment for India but that was to be expected.  But after awhile, we noticed India becoming agitated and then depressed.  We couldn’t figure out what the hell was going on.  We didn’t necessarily suspect the school was the root of the problem but we checked anyway, several times.  We’d come down to the school to see how our daughter was doing.  Every time we paid a visit, India would be out in the playground with other children or in the classroom working on a project with at least one other kid.  It couldn’t be the school.  We wondered if her depression came from a new realization of her physical condition, a chemical imbalance, or something else that we couldn’t see.

The school year finally came to an end, summer was upon us, and India was back to her old happy self.  We were relieved and went on with life and had a great summer.  We spent several weeks at the beach in San Diego, went to the mountains in Colorado, and watched more movies than I care to count.  But as summers do, this one came to an end.  It was time to brave the long lines at the local store and stock up on the new semester’s school supplies.

As we were shopping for the new school year, we happened to run into the teacher’s aide from the previous year.  We greeted each other and had the usual small talk; how was your summer, are you excited about the new year, when are you going to get your teaching certificate, etc.  I noticed that she looked a bit nervous as she was talking to us but I didn’t pay much attention to it.  To our surprise though, she dropped the bomb of all bombs on us very abruptly.  This young assistant almost broke down and cried, right in the middle of the store when she said, “Listen, I have to tell you something.”

She went on to tell us that she couldn’t live with herself if she didn’t tell us what had happened the semester before with India.  She said that she’d wanted to tell us during the school year but she was too afraid.  She told us in detail how India’s teacher would put her in the corner of the classroom all day in her wheelchair, the brake on so India couldn’t wheel herself back to the children.  India would have to sit there as she watched the other children do art andmusic, have snack time, and socialize.  My little girl was forced to just sit here and watch. She was not attended to or allowed to interact.  When it came time for recess, she would only be taken out into the playground part of the time.  When she was taken outside, she was placed against the wall by the door and left yet again all by herself to just watch the other children enjoy their outside time.  My daughter had been neglected and abused by her teacher and the administration of the school did nothing.  And as when India experienced the painful sticker embedded deep in her skin but couldn’t tell us, she again was in a painful situation, helpless and unable to let us know what was going on.

The aid went on to tell my wife and I that every time the teacher would  see us coming, she’d quickly make sure that India was put with a group of children and made it look like she was included in whatever project they were working on.  If it was recess time when we’d arrive, the teacher would roll India’s chair into the middle of the playground and pretend to be play with her. 

I stood there in the middle of the store, staring at this young lady as she gave us intimate details of the neglect and abuse inflicted on my daughter.  By this point, she had tears running down her cheeks.  I don’t know how Veruca felt but I was a moment away from running out of the store, tracking down this teacher and beating her to death.  I was a ball of rage, my heart was pounding, my adrenaline was pumping, and my eyes were full of tears. 

To this day, I can’t tell you what the fuck this teacher was thinking or why she did what she did; I can only assume.  It’s my assumption that she had little empathy, no compassion, and was too lazy to do her job.  I don’t want to believe that she was just sadistic.  Either way, she had and has no business being a teacher of our children, no way.

As we drove home, we didn’t say a word.  Our heads were spinning from the news we’d just received.  The only thing I can possibly compare this to is most likely how a parent feels when they find out that their child has been raped.  How the hell could somebody do this to a helpless child, especially an educator and the trusted administration?

That very day, we filled out the paperwork to transfer our daughter to a newer school on the opposite side of town.  We made some inquiries to ensure that the previous year’s abusive teacher hadn’t transferred to this new school and scheduled a meeting with the new teacher, her aid, the entire administration, and the heads of the school district.

On the day of the meeting, I felt calm and focused as I put on my best suit and tie, placed my recording device and legal pads in my brief case, and headed out to have a “come to Jesus” moment with the Las Cruces public school system.  By this time in my career, I was very well known in the community and had acquired quite a bit of wealth and power.  As a matter of fact, the new school was surrounded by my development projects and the entire area was plastered with my real estate signs.

We convened the meeting at the new school’s conference room. Every seat was taken and a few people were forced to stand.  Veruca and I sat there as we listened to the administrators give us their canned and legally sanitized speech about the benefits of this school and how India would thrive here.  It was basically what the previous school had said to us.  I really wasn’t listening, just looking at the administrator’s lips while they were moving, as she mechanically blurted out words she’d clearly used a thousand times before.  I waited intentionally until the administrator was reaching the climax of her memorized dialogue.  Then I interrupted abruptly.

“Ma’am, I think it’s time for me to convey something very important to you and the rest of the people in this room.  I also expect every person here to convey what I’m about to say to others in the school district.  My daughter was neglected and abused last year at her previous school.”

I went on to give every possible detail and the impact it had on our daughter and the rest of the family.  Every eye in the room was fixed on me, unblinking. They were caught completely off guard.  I could sense that the teachers and therapists in the room were horrified and in disbelief at what they were hearing.  I knew for sure that the administrators were getting that terrible sinking feeling as I took the time to glare at each and every one of them while I was talking.

After I described what had happened, I went into attack mode.  I started my next sentence with “My name is Nick Rank,” (everybody knew this but it was for effect) “and I need to make sure that each and every one of you know that if something even remotely like what happened at last year’s school happens here, I’ll not only sue the school district but also the teacher, assistant, and administrators individually.  My family and I have many resources and will put every last penny into making your lives a living hell if you don’t do your job and look out for my daughters’ best interests.  I will hire a public relations firm with the directive to ensure every media outlet possible in the western United States runs the story of what’s happened.”

'Before I knew it was happening, I had tears flowing down my face as I said to the room, “My children are my life and India is unable to fend for herself, she is exposed and helpless.  She didn’t ask to be the way she is.  This little girl wants to play, interact, have friends, and learn.  Mentally, she’s just fine so when she’s excluded and kept in a corner six hours a day, she processes it just like any other kid would, she just cant express her sadness verbally.  Please don’t do this to my baby again, she doesn’t deserve it, she’s not a monster.”

I looked up to see every person in the room staring at me; some had tears rolling down their cheeks.  The head of Special Ed said in a very quiet voice, “This will never happen again, I assure you.”  Then India’s new teacher, who was one of the people who was crying, said that she would look out for my daughter, love and include her in everything.  She said it sincerely and it came from her heart, I could feel it.  She is still a friend to this day, a beautiful person who kept her word and gave India a wonderful school experience over the next year.

As a final note to this chapter, I have to say that I can’t begin to imagine what I would have done in this situation if I hadn’t had the resources, contacts, and power that I did.  If I were a fry cook or had some other minimum wage job with no resources and a disabled child who was being neglected by the school system, we would have been screwed.  I see it happen all the time.  The system chews up and spits out families all the time.

Our Day In Hell Part 5 - Bonk

It seemed like every day we faced new challenges we never could have expected, both big and small.  One that really stuck with me was when we decided to take India on a walk.  We put her in her stroller and set off towards the local park.  Just after we headed out, India started whimpering, then crying, then screaming.  To save our lives, we couldn’t figure out what was wrong.  We re-positioned her, held her, tried to feed her, adjusted her straps and finally gave up our walk and went home.  When we arrived back at the house, we undressed India so we could change her diaper and to our horror found a sharp sticker from some sort of weed embedded deep into the skin of her buttock.  Somehow this damn sticker found its way into the stroller and ended up penetrating her delicate skin. 

Although my little girl was old enough to communicate verbally, she couldn’t because of her Cerebral Palsy.  The only thing she could do was cry in the hopes we’d figure out what was wrong.  This was very rough for me because I was unable to understand what she was trying to tell us. It was especially hard because I felt so sorry for the frustration my little girl must have felt at not being able to communicate. 

Veruca and I pushed on, getting up every morning, putting on our shoes, taking that first step and doing the best we could.  Fortunately, after a couple of years my business began to take off.  I started to push Veruca to up the amount of therapy for India.  I truly believed that the more therapy our daughter could participate in the better; and since we didn’t know which therapy was beneficial and which one wasn’t, we just decided to do all of them in unprecedented amounts.  We began to travel around the United States and Canada for services.  I would rely on Veruca to find the services and I’d find a way to pay for them.  Our daughter did begin to progress as a result of the therapies, but I still wish I knew then what I know now. I wish I’d known that simple lifestyle changes with good routines and plenty of activities at home truly had the potential to help India’s progress and have a lasting effect, rather than twenty different types of therapies away from home. I didn’t know this then—I didn’t know how to create a stable home and beneficial routines, or how to encourage India to be independent—I thought I’d get all the answers from therapies. They did help somewhat though: India began to gain muscle tone and to sit with her legs crossed for short periods of time unaided, and she developed some strength.  She started eating better and clearly became happier.

We were ecstatic about these improvements; we thought she was beating the odds in a huge way.  So over the next nine years, we put absolutely everything we could into India’s care and rehabilitation.  *The list is long and reached costs of up to $250,000 per year.  If we had the money, we’d pay cash, otherwise we’d max out our credit cards and use a second mortgage on our home to cover the expenses.  The intensive regiment of interventions and therapies kept India, Veruca, and at times our second daughter on the road for the better part of each year, including almost 12 consecutive months in Canada.

While all of this traveling was taking place, I also had to run my company, which was booming.  I often had to do this from wherever India was, remotely.  I was constantly in an airport, hotel, hospital, restaurant, or intervention facility with my laptop and cell phone, working away.  There was even a time where India was yet again on life support and I was forced to work while sitting by her side, but more about that later.

Almost two years after India was born, we had another little girl, Harriet.  As Harriet grew, she became best friends with India.  Harriett didn’t see anything wrong with her sister; she treated her like any other kid.  This included screwing with her big sister.  Harriett could execute guerrilla warfare on India, attack and run.  Of course India couldn’t pursue Harriett, which made the game all the more fun for India’s little sister.  There was one day that Harriett’s guerrilla warfare came to an end and I’m happy to say that I was fortunate enough to witness it.

Harriett must have been about 4 years old and had gotten her hands on a long tube from a roll of gift-wrapping paper.  She was running in big circles around the living room, whacking India’s head with the tube every time she passed her.  India was furious, yelling profanities in her own way after every whack.  What I didn’t notice at the time was that India was intently watching her sister’s every move, waiting to strike.  The moment finally came during one of her sister’s whacking raids.  India had patiently waited for her sister to become complacent, to get too close.  Harriett came in for another attack on her sister, and as she approached India, raising the long cardboard and preparing to drop the bonker on India’s cranium, India shot out her one good arm, grabbing Harriett’s hair.  Before I knew it, India was yanking her sister’s head back and forth.  Harriett was shrieking at the top of her lungs, India’s eyes were wide open, a smile from ear to ear as she performed her well earned payback.  I’d never seen India look so satisfied ever in her life. She was in control.  Harriett was screaming at an octave high enough to shatter glass, India was laughing at the top of her lungs, the dog was howling, the cats had run for cover, and there I stood, sipping a cup of coffee watching the mayhem in my living room, happy as a father can be.  My daughters were interacting just like other siblings do around the world, for the first time.

India was empowered after the whacking event, and she had much more confidence, not to mention respect from her little sister.  India began to tease Harriett as often as she could.  One of her favorite things to do that just drove her sister crazy was to mimic Harriett when she was talking to her mother.  You see India at the time really couldn’t talk.  She could however open and close her mouth at whatever speed she wanted.  Whenever her sister was talking to her mother and her mother’s back was to India, India would open and close her mouth at the same rate her sister would while speaking.  This would infuriate Harriett, she would turn bright red and yell, “Stop it, India!”  When the girls’ mother would turn around to look at India, India would have stopped mimicking her sister and would give her mother an innocent look.  India couldn’t ever keep the innocent look on her face though, she would curl up and giggle in a beautiful high-pitched laugh from deep inside her; it was heartwarming. 

As India became stronger and gained more control over her body, she learned to maneuver her manual wheelchair by herself.  She would wheel that thing all over the house using her one good arm.  This was a new sense of freedom for India.  The first time that India actually was able to move the wheelchair from one part of the house to another was an evening to remember.  Veruca and I were in the kitchen talking as dinner was being prepared.  We had put India in her wheelchair back in her room.  Until that point, India could only rotate her chair in circles.  Veruca and I were deep in conversation when we heard India yelling “eewww, no Gary no, eewww,” followed by a loud squeaky laugh.  As we spun around to see what was happening, we saw India in her chair, parked just outside the bathroom, watching the dog drink out of the toilet.  India had figured out how to wheel her chair out of her room, down the hall, and position herself in front of the bathroom door so that she could watch the family dog have a refreshing drink of toilet water!  India made a point of telling the story of her dog drinking toilet water as best she could to anybody who’d listen for many months to come.  It made her laugh like a loon each and every time she told her story.

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.

Holding Out Hope

My daughter has beaten all the odds throughout her 13 years on this planet.  She's a true champ, one of my best friends and my hero.     

Up until late 2007, early 2008, she progressed so much that she could walk, dance, stand and jump with just a little assistance.  This was due to intense interventions and therapy all throughout the United States and Canada.  In 2008 though, everything went wrong.  

India spiraled downhill before my eyes and the worst of it wasn't witnessing India's bitter disappointment as she tried in vein to make her body work.  The worst of it was the pain that ravaged her.

As a father, this is horrific to witness and the helplessness can't be properly described. Sometimes late at night, the pain gets so bad that India asks me to hold her on my chest as we are lying down.  She curls up in the fetal position while I rub her back and legs to relax her little body and hope to alleviate the pain. 

We’ve gone through a series of doctors, all of whom have good intentions.  But despite the best of intentions, some of the doctors have been very wrong.  In fact, several of the suggestions from Physicians could have caused India a lifetime of intense chronic pain and infection. 

Fortunately, I’ve been at this for 13 years now and am wise enough to know to question everything.  We did some research and found a world-renowned doctor in Summit, New Jersey who specializes in working with children with disabilities.

We recently made the trip from our home in New Mexico to New Jersey.  Our visit with this doctor was beyond belief.  For the first time in a very long time, I felt overwhelming hope and happiness. 

This new doctor was the first to not want to do intensely invasive surgery.  He explained in detail what the bleak outcomes would be if we allowed India to go under the knife and saw of the surgeons.  Keep in mind, the previous surgeons wanted to saw off the top of my daughter’s femurs and pack the leftover void with some sort of substance in the hope to keep the remaining femur from pushing its way through the muscle and skin; leaving bone exposed.  This new doctor talked about the infections and pain that would be caused from the plethora of screws and hardware that would have to be attached to India's bones. 

So he we sit, excitedly preparing and patiently waiting for September 27^th, the day of the new doctors outpatient procedures.  My little girl will have what’s called an Alcohol/Ethanol Chemoneurolysis to take away her chronic pain in her hips. This is procedure where the nerves that are causing my daughters pain will be treated with a solution that deadens them.  She will then have a Soft Tissue Lengthening to loosen up her hips/legs.  And finally, my baby-girl will receive a Transtympanic Neurectomy and Chorda Tympanotomy.  This procedure eliminates her excessive drooling.  India is absolutely beautiful and currently has 2 boyfriends.  I can clearly see her embarrassment when she drools in public so this procedure should really help her self esteem.


I’m feeling like I can see the light at the end of the tunnel right now.  I’ll let everybody know how it goes at the end of this month.


On a side note, I have to admit that we are incredibly fortunate to have good insurance.  Just the doctors fee for the Transtymapanic Neurectomy is $9,000.00, not including hospital fee's.  The entire bill will exceed $40,000.00.  I feel so sorry for those parents who don't have insurance.

The following are 3 of the 4 stories of what happened to my daughter that left her with Cerebral Palsy:

http://donniebrainard.blogspot.com/2010/04/our-day-in-hell-part-1.html

http://donniebrainard.blogspot.com/2010/04/picu-our-day-in-hell-part-2.html

http://donniebrainard.blogspot.com/2010/04/circle-of-friends-our-day-in-hell-part.html

India Walking On The Beach 2007

India Standing 2008

India Skiing 2009

Deadly Evening At The Tijuana Border Crossing

In 1988, I was in the NAVY in San Diego, California.  One weekend night, some friends and me decided to go down to Tijuana to party.  There were about 6 of us packed in a small economy car flying down the 5 freeway.  The traffic was pretty heavy but moving quickly. 

Not far before the Tijuana border crossing, I saw something ahead of us in the road moving from right to left.  At first, it looked like a dog, and then I realized it was a man running very fast, out of control, trying not to fall.  He was trying to stay upright; he was using his hands on the asphalt to keep from sliding face first across the road.

Just as we came upon him, he fell and slid on his belly, we ran over him.  There was a long silence in the car, then I said “We need to stop”, we just hit somebody.  The driver in the car was in disbelief and said that we hit a dog.  I just sat there stunned for a few moments then insisted that we pull into a parking lot.

We were at the border crossing by this point, pulled into a parking lot and got out of the car; the driver was still insisting that she’d run over a dog.  Another passenger in the car got under the car and a few moments later said, “oh fuck”.  He stood up holding a bloody jean jacket.

I’ll never forget the look on the drivers face; she was horrified.  We called the police, my friend explained where and what had happened.  The officer on the other end of the line was making inquiries on the police radio as he was talking to my friend.  He finally let us know that the accident had already been reported, emergency crews were on the scene and that we’d not been the only car that had hit the pedestrian. 

The next morning the police explained to us that the pedestrian that we hit was a “coyote” transporting illegal aliens from Mexico.  He had been pulled over with a van full of illegal Mexicans.  He ran, jumped the fence alongside the highway and ran out into the traffic. 

A car clipped the pedestrian before he got to us, which is why he was trying to regain his balance.  We hit him and then according to police, a series of cars ran him over after us; he was dead.  The police said that they were not going to press charges against anybody because they knew he was running from police and dashed out onto the highway giving the vehicles no chance to miss him.

My friends’ car was damaged from this incident.  A few days later, she took it in for repairs.  Not but 2 hours later, the mechanic calls to let my friend know that he’s found 3 severed fingers wedged up under the car.  He was pretty freaked out and asked what we wanted to do with them; he had to be calmed down.  The police were called again to collect the remains. 

If you drive down the Interstate 5 south near the Tijuana border crossing, you’ll now see highway signs showing a family holding hands and sprinting.  This is to warn drivers of the dangers of people crossing this massive Interstate on foot.  There are also huge chain link fences on stretches of this roadway to prevent people running across the highway.

I wish the fence was there in the 80’s.

My Sister the Buddha

When my sister graduated from College (with honors), she made the decision to go to medical school.  We were all very excited for her although the thought of coming up with the money for her tuition was a bit daunting.

So off my sister went to learn how to wield the scalpel, analyze the anus and operate the machines that go “beep”.  Her medical school of choice for the first 2 years was in the sunny Caribbean, 365 days of sun and nakedness.  The 2^nd half of her schooling was in the land of people with bad teeth – The United Kingdom.

What we didn’t realize was that as my sister was studying medicine, she was also studying Buddhism, big time.  We knew she was dabbling in the Buddha Buddha stuff but we had no idea about what was about to happen.

When her 4^th year of medical school was finished and it came time for the graduation ceremonies, we all flew to New York City to watch my sister receive her diploma at Radio City Music Hall.  The pride we all had for my sister was huge.  We set a dinner at a very fancy restaurant a few hours before the graduation ceremony so that we all could celebrate as a family.  Everybody came with gifts and heartfelt speeches for my sister.  We were going to properly send her off into the world of medicine.

Everybody but my sister arrived at the restaurant, she was late as usual.  The excitement was palatable.  People were speculating on what area of medicine my sister would practice.  I of course placed my money on Proctology, since there were so many assholes in our family, she’d make millions.  Then my sister arrived.

She was as radiant and beautiful as always but there was something that nobody expected.  My sister had a shaved head and was wearing all orange, dark orange.  My first thought was that she picked up some new strange fashion in the UK; they’re weird like that.  I could tell that everybody was trying to figure out why this young lady with beautiful long blond hair had shaved it off and why the hell she was dressed so badly.   

My sister greeted everybody, sat down and told us she had something important to tell us.  I figured that she was going to finally admit that she was going to be a Proctologist, boy was I wrong.  She proceeded to say in a very calm voice that she’d made a life changing decision.  My sister, my dear sister, my dear misguided sister, after 4 years of medical school and hundreds of thousands of dollars in tuition had become an ordained Buddhist Nun and was going to spend the rest of her life following the Buddhist teachings.

Believe it or not, I sat there thinking, “cool, a Buddhist Nun Doctor – Proctologist”!  But again, boy was I wrong.  My sister went on to inform us that she’d accept her medical degree diploma tonight at Radio City Music Hall but she really wanted to make a difference to humanity so she was not going to practice medicine, she was going to travel from temple to temple refurbishing Buddhist deity statues while spreading the word of the big jolly guy – Buddha himself.

This is one of those times that I wish was being recorded, it would have gone viral 10x over on YouTube.  My mothers’ head dropped, I spit Coca-Cola out my nose and my sisters’ father turned so red, I thought he would have a stroke right there at the table.

I don’t think I need to explain more about the night, you can just imagine.  But in all fairness to my sister, years later, she is still traveling all around the world with the Buddha Buddha’s doing whatever Buddha’s do and she’s as happy as a Buddha can be.

The End

"Wog Day" Initation Onboard the Aircraft Carrier USS Ranger CV-61 1989

"Wog Day" Starts at 1:21

The two-day event (evening and day) is a ritual of reversal in which the older and experienced enlisted crew essentially takes over the ship from the officers. Physical assaults in keeping with the spirit of the initiation are tolerated, and even the inexperienced crew is given the opportunity to take over. The transition flows from established order to the controlled "chaos" of the Pollywog Revolt, the beginnings of re-order in the initiation rite as the fewer but experienced enlisted crew converts the Wogs through physical tests, then back to, and thereby affirming, the pre-established order of officers and enlisted. Like the old physically and emotionally intensive boot camp, the "Crossing the Line" ritual deconstructs and then reconstructs the initiates' experience from newbie outsider into the experienced military fraternity.

The eve of the equatorial crossing is called Wog Day and, as with many other night-before rituals, is a mild type of reversal of the day to come. Wogs—all of the uninitiated—are allowed to capture and interrogate any shellbacks they can find (e.g., tying them up, cracking eggs or pouring aftershave lotion on their heads).[citation needed] This is not a thing that a true shellback will ever have happen to them.[opinion] The wogs are made very aware of the fact that it will be much harder on them if they do anything like this.

Polish line-crossing ceremony (Chrzest równikowy)
After crossing the line, Pollywogs receive subpoenas to appear before King Neptune and his court (usually including his first assistant Davy Jones and her Highness Amphitrite and often various dignitaries, who are all represented by the highest ranking seamen), who officiate at the ceremony, which is often preceded by a beauty contest of men dressing up as women, each department of the ship being required to introduce one contestant in swimsuit drag. Afterwards, some wogs may be "interrogated" by King Neptune and his entourage, and the use of "truth serum" (hot sauce + after shave) and whole uncooked eggs put in the mouth. During the ceremony, the Pollywogs undergo a number of increasingly embarrassing ordeals (wearing clothing inside out and backwards; crawling on hands and knees on nonskid-coated decks; being swatted with short lengths of firehose; being locked in stocks and pillories and pelted with mushy fruit; being locked in a water coffin of salt-water and bright green sea dye (fluorescent sodium salt); crawling through chutes or large tubs of rotting garbage; kissing the Royal Baby's belly coated with axle grease, hair chopping, etc.), largely for the entertainment of the Shellbacks.

Once the ceremony is complete, a Pollywog receives a certificate declaring his new status. Another rare status is the Golden Shellback, a person who has crossed the Equator at the 180th meridian (International Date Line). The rarest Shellback status is that of the Emerald Shellback (USA), or Royal Diamond Shellback (Commonwealth), which is received after crossing the Equator at the Prime Meridian.[When a ship must cross the Equator reasonably close to one of these Meridians, the ship's captain will typically plot a course across the Golden X so that the ship's crew can be initiated as Golden or Emerald/Royal Diamond Shellbacks.