Thursday, September 26, 2013

Beautiful Love Part 2 - She Had Something Important To Say.

In the spring of 2013, as the school year came to a close, I became very concerned about my daughter India.  She was transitioning to high school and I found myself unprepared emotionally as “Daddy”.

Back in the 1980’s when I was in high school, some kids had cars, most had sex, we drank rot-gut booze, fought and used drugs. And we had one hell of a good time.  But there was a darker side to my high school experience that I didn't know would affect me in my later life the way it has. 

There wasn’t “political correctness” as we know it today when I was in high school. Seeing students treat handicap peers or minorities with complete disregard and cruelty wasn’t uncommon. And now my handicap and helpless daughter who was also a minority as a result of her condition, was about to be transferred to high school in very same school system.

One morning just before the summer break as we were getting India ready for school and going through the routine of feeding, dressing, medicating, and stretching, she did something out of the norm. India reached up and placed her little hand on my face. India can only use one arm, she's triplegic and so her touching me like that, so gently is really sweet can be difficult for her to do. She clearly wanted my attention.  When India knew I was listening, she moved her hand away from my cheek and gave me a nervous smile then said: “left thumb going up and down” (sign for India’s name) + “anniieeeell” (verbal for Daniel) + “koooolllll” (verbal for school). Then she lay there waiting for me to respond.  She had just asked "Are India and Daniel going to school?" 

This was a daily question that to be honest became so repetitive that I found myself frustrated at times being asked over and over every single morning. But every day I smiled and said "yes" you'll see "Daniel" with the occasional poking fun by saying "young lady, you better not be kissing him!!!" Always said with an exaggerated frown, Richard Nixon voice and demeanor. But I knew all kidding aside, India just wanted reassurance that she was going to see her "boyfriend".
So when I gave India the usual response of “yes, Daniel will be at school today”, India curtly replied “no”. Placing her hand back on my cheek. 

That's when I realized my daughter was making a serious effort to tell me something. I smiled at her and said "what can I do for you pal".

Then she did it, and I mean India really did it.  My profoundly disabled daughter was looking up at me with her beautiful eyes and said:

“Why” (verbal) + “anniieeeell” (verbal for ‘Daniel’) “by-by” (verbal for ‘going away’) + “koooolllll” (verbal for ‘school’) + “left thumb going up and down” (sign for India’s name) + “uuhhhhhh- uuhhhhhh” (verbal for ‘crying’)” + “patting her heart” (sign for love) + “anniieeeell” (verbal for ‘Daniel’)” + “no by by” (verbal for ‘don’t go’).  

I sat there with India’s head on my lap while she looked up at me, a cautious smile on her face.  She wasn't sure if I understood what she’d just told me.  Most people can’t understand India at all and seeing her frustration when her just trying to ask for something to drink can be heartbreaking. Especially when people talk back at her like a baby.

So as I looked down at India, I realized I was crying. Tears were dropping directly from my eyes and onto her face.  India didn't flinch or react when each landed on her skin; she just kept staring at me, waiting to see if her message was understood.  It was.

My daughter said: “Why is Daniel leaving school? I’m going to cry, I love Daniel, and I don’t want him to go.”

As India and I always do when we communicate, I repeated what I thought she’d just told me for conformation. This time I started by saying "Did you just say..." when the last word passed my lips, India started to nod her head up and down while her chin began to quiver. Her eyes filled with tears. I could see she was trying to hold it in but just moments after her bottom lip began to stick out, she loudly said "yes" as the dam broke and she cried harder than I'd seen in a very long time. India knew I understood, her voice had been heard. 

I stroked her hair and said "I'll take care of it, don't you worry" India slid her hand onto the back of my neck, pulled me to her, held me and said “taaank ooo Daddy” (verbal for ‘thank you Daddy’).  

About an hour later, I watched India's bright yellow school bus pull away from our house as she grinned at me out of the window. This beautiful, beautiful girl had been so afraid of losing her boyfriend and the frustration of not being able to tell or talk to anybody about it was overwhelming for her. I was feeling so happy in so many ways.  So much sorrow for her knowing how frustrating and cruel her world is being trapped in a painful broken body where can hardly communicate. I felt fear because I had no idea what was going to happen to her boyfriend, where he would be transferred to. He too was in the 8th grade and scheduled to move onto high school next semester. 

What if his parents were going to transfer him to a school too far away for India to attend; should I be prepared to move to that part of town so they could be together? And what if Daniel's parents were leaving the state. I had no idea and I'd just told my daughter that "I'll take care of it, don't you worry".

Later that morning, I drove to India’s school. As expected, India and Daniel were sitting next to each other, holding hands. But I was caught off guard when the teacher walked straight up to me and before I could say a word asked “what are your plans for India next semester”? So I told her what had happened between India and myself that morning.  When I was finished, the teacher smiled at me and looked down at the ground. Then she said “You know – I hear Daniel is going to stay here for another year. I can’t say for sure but you might want to check”. 

The relief I felt was intoxicating.  All I could say was "thank God".

So before the school day was done, I let the school administration know that India would be remaining for another year. I think it caused some heartburn in the system. To be honest, I didn't give a shit and felt like saying to the irritated "paper pusher" who was urging me to move India onto high school – “fuck off sunshine”. But I didn't, I just said "no thank you", my daughter would like to stay at this school for another year. 

That night when I tucked India into her cozy bed she asked me: “left thumb going up and down” (sign for India’s name) + “anniieeeell” (verbal for Daniel)” + “koooolllll” (verbal for school) = Are India and Daniel going to school?

I said with a grin “you bet baby girl". India smiled, curled up in a ball and squealed with delight.

"Fall is here, hear the yell 

back to school, ring the bell 
brand new shoes, walking blues 
climb the fence, book and pens 
I can tell that we are gonna be friends 
I can tell that we are gonna be friends 

Walk with me, India B.
through the park, by the tree 
we will rest upon the ground 
and look at all the bugs we've found 
safely walk to school without a sound 
safely walk to school without a sound 

Here we are, no one else 
we walked to school all by ourselves 
there's dirt on our uniforms 
from chasing all the ants and worms 
we clean up and now it's time to learn 
we clean up and now its time to learn 

numbers, letters, learn to spell 
nouns, and books, and show and tell 
playtime we will throw the ball 
back to class, through the hall 
teacher marks our height against the wall 
teacher marks our height against the wall 

and we don't notice any time pass 
we don't notice anything 
we sit side by side in every class 
teacher thinks that I sound funny 
but she likes the way you sing 

tonight I'll dream while I'm in bed 
when silly thoughts go through my head 
about the bugs and alphabet 
and when I wake tomorrow I'll bet 
that you and I will walk together again 
I can tell that we 
are going to be friends 

yes I can tell that we are gonna be friends. 

... Jack White - The White Stripes 

Saturday, September 21, 2013

Documentary About Conductive Education In Tuscon, Arizona With Viktoria Szolnoki

Friday, September 20, 2013

Our Day In Hell Part 11 - Chronic Pain

During India’s 11th year, she began to show signs of chronic hip pain.  Her condition became progressively worse over the next twenty-four months.  Viktoria and I did everything we could to prevent the problem from becoming worse but Mother Nature had other plans. 

Because of her worsening condition, we took India to visit her local Pediatric Orthopedic Surgeon.  She had multiple x-rays taken and the results were chilling.  The tops of India’s femurs had grown perfectly straight versus the natural angle placing the ball into the hip socket.  There were no hip sockets and the balls of femurs were worn down to virtually nothing; just jagged edges. 

India's pain rapidly became unbearable; every movement came with a grimace and moan. This was crushing for me as her father, to watch my child in so much pain and not be able to take it away. She’d wince with every move, often bringing a scream to her mouth or tears to her eyes.  I’d regularly have to hold India in my lap, while I tried to sooth her.  She’d sit there holding onto me with her one good had saying “owie daddy – help me”. 

India’s Orthopedic Surgeon told us that our only real option was to open up each of India's femurs, saw of the tops and stuff the void left behind where the bone was removed with material to try and prevent the remaining bone from piercing through her muscle and skin.  This invasive procedure would have taken up to a year for India to recover and virtually guaranteed a lifetime of pain and discomfort. In addition, my little girl was so fragile; I didn’t think she’d have good odds of surviving this surgery.

My wife Viktoria and I did a massive amount of research to find alternatives and the best doctors in the world that could help India. We discovered that some of the finest physicians out there for India’s condition are located on the east coast of the United States.

India and I immediately flew across the country to meet with these cutting edge physicians and get their suggestions on how to help my little girl. The doctors suggested 3 procedures that were relatively non-invasive and outpatient.  We booked India’s surgeries on the spot for the following month, and then flew home.

Just after India and I returned from the east coast, a lump was found in my chest that appeared to possibly be dangerous.  My doctor immediately scheduled surgery to remove the mass.  My operation took place on a Wednesday; it took about 2 hours to remove the growth.  Two days after my surgery, I began to have substantial internal bleeding. The doctor had to remove a large quantity of blood from my chest, leaving an impressive dent in my right breast.  Two days after that, I flew India to the east coast for her surgeries.  The trip to the eastern United States was rough on me as I had just been cut open, was black and blue, leaking fluids, exhausted and experiencing quite a bit of pain.  I had to constantly lift and maneuver India, her wheelchair and equipment throughout the trip on airplanes, shuttles, trains and all around airport terminals.  All the while trying to be gentile with India because of her hip pain.

India’s mother had flown the same day but on a different airline.  She told me that she didn’t want India to stay with her on the first night because she was tired from school and the long flight to the east coast; she needed her sleep.  Even though Veruca knew about my surgery and complications several days before and that I had also just finished a long flight, caring for India was out of the question for Veruca, she wanted a good night’s sleep.

I brought India to Verucas hotel room the next afternoon so that she could spend the night with her mother.  As I was leaving Verucas room, as usual, India began to plead with me to not leave her with her mother.  I told India that I loved her but she needed to stay with her mom. 2 hours after leaving India in Verucas room, I received a call from Veruca letting me know that India hadn’t let up on wanting to be with me and had become more adamant that she wanted to leave.  Veruca asked if I’d come get India and let her stay in my room, I happily agreed.

We arrived at the hospital the next day at 6:00 am.  I could feel India’s apprehension and fear, not to mention my overwhelming worries.  We were taken to the pre-operative room where I placed India in her hospital gown and onto the gurney.  The nurse said that only one person could accompany India to the surgery prep-room.  India’s mother asked to be the one to accompany her.  Not wanting to make a scene, I agreed.  As they began to wheel India off with her mother in tow, India in a scared voice began to say “Daddy, Daddy”, reaching for me. I paused, foolishly thinking that Veruca would respect India’s request, turn back and let me go with our child, but this didn’t happen and I was foolish to have expected it to have.

Several hours later, we were notified that India was out of surgery. We went into the recovery room and saw an all too familiar sight.  India was unconscious, swollen, her skin a grayish-yellow and surrounded by monitors and intravenous lines.  Her lips were dry, the sides of her head stained with yellow surgical Iodine solution, ears stuffed with gauze, blood seeping through.  The numerous bandages on her surgical points all had had red splotches.  I’ve been in this situation so many times with my baby girl, it’s difficult to describe how deeply painful it is for me to see my child in this state; regardless of the reason.  I find myself indescribably sad, anxious, helpless, physically exhausted and even angry.  This sweet little girl did nothing to deserve this, nothing at all.

When India was released from the hospital, she was very lethargic and drowsy; she looked terrible.  We took her back to the hotel to rest.  The doctor’s philosophy was to get the patient the hell out of the hospital ASAP to recover; hospitals are major incubators for infection.  Veruca wanted India to stay in her room the night she returned to the hotel.  India was in and out of consciousness as we got her set up in Verucas room.  She wasn’t looking any better and clearly had significant pain, enough so that Veruca suggested that she should stay an extra day or two in case India had to be hospitalized; Veruca was scheduled to leave the next day.  I responded that it might be a good idea; I felt the odds were high that India would have to be hospitalized.

The first night out of the hospital in Verucas room was extremely tough for India.  She was in a lot of pain and took a huge amount of care.  According to Veruca, she was up most of the night caring for India.  The next morning when I arrived, Veruca was packed and ready to go.  After a long night caring for India, she’d completely blown off our conversation about her staying a couple more days to help with our daughter.  She was leaving regardless of the possibility of India having to be hospitalized.  I didn’t say anything; I’d seen this narcissistic behavior from Veruca many times before.  When I confronted Veruca with this later, she would use the excuse that she had to get back to class, although her professors gave her all the time off she needed.  She’d also use the excuse that she had no money even though I offered to pay for her room and meals. 

Luckily, India didn’t have to be hospitalized.  Viktoria, India and I spent the next week in our east coast hotel room so that India could recover enough to take the long flight home.  It was a stressful, exhausting and a long week as India was weak and in pain most of the time; she required a lot of care.  We were able to take an afternoon drive with India to New York City to tour the Plaza Hotel. India’s favorite book and TV character is Eloise, who lives at the Plaza.  India had the time of her life, an ear-to-ear smile the entire time.  This was the first time India seemed like her old self in months.

The next day we flew home but unfortunately, and as usual, we were facing more of the same from Veruca and a much longer and tougher recovery for India than we thought.

Several days after returning, Veruca tried to put India back in school, despite my vigorous protests and India’s obvious physical state.  Veruca did send her to school but it lasted only one day. India spent the entire time asking her aide to hold her in her lap because she was in so much pain. The aide couldn't give my daughter this comfort because the school system said that it wasn't appropriate for the aid, who is a woman, to hold my 42 pound daughter and comfort her; it was a terrible day for India.  Fortunately, India got to come home to me that afternoon. 

India returned to my home in very bad shape.  She’d not been stretched as directed by the doctor and as a result was terribly stiff and in bad spirits.  She began to have exceptionally intense and painful contractures in her legs.  The doctor who performed the surgery on India had prescribed liquid Diazepam to control these contractures. He told us to not hesitate to use this drug when India’s contractures began. When I went to India’s medicine bag to get her the Diazepam, it wasn’t there.  I quickly contacted Veruca to ask about the Diazepam; I assumed she forgot to send it over from her house.  To my horror, Veruca proceeded to inform me that she intentionally kept the Diazepam and didn't want India using this necessary and prescribed medication.  After many attempts to gain access to the withheld prescription, I was forced to call the police.  After about 45 minutes, the police arrived at my house with India’s Diazepam. The policeman let me know me that Veruca was very difficult and angry that she had to give up our daughter’s medication. He went on to say that he couldn't understand why a mother would unilaterally withhold prescribed medication from her own daughter. India had to endure several hours of needless pain because of her mother’s personal beliefs, regardless of the impact on India; I was livid.

Because of Verucas past history of neglecting our children, her aggressive desire to place India back in school before she had healed from her 3 surgeries and now her refusal to provide our child with the necessary medication, I was forced to bring in an officer of the court.  Fortunately, the court ordered that India was to spend every day with me during her mother’s week every day so that Viktoria and I could care for her.  Veruca wasn’t happy about this and fought as hard as she could but thankfully lost the battle.

India’s recovery was brutal.  At times, she was in extreme pain.  She had bruises throughout her body where the surgeries took place.  The operation for her mouth caused a bad reaction, which resulted in a nickel sized bright white hideously painful sore that formed on the tip of her tongue, resulting in India not being able to eat.  Then India came down with a nasty virus that caused her to vomit every time we were able to give her smallest bit of food or drink.  And finally, she began to have horrendous nosebleeds.  The worst of which happened one morning before dawn.  When I went into India’s room to get her ready for the day, she was laying in a puddle of blood.  Her long beautiful blonde hair was knotted in black and red congealed liquid.  Her face was completely covered, including her eye sockets.  Her tongue was black from the blood that pooled in her mouth.  India’s ears were caked with the drying fluid and both nostrils were totally blocked with black blood clots.  It was a gruesome sight. It had visibly shaken her as she began to sob when I walked in the room, she grabbed onto me and said “Daddy” over and over while she cried.   

I picked India up and took her to my bathroom to give her a long warm bath and get her cleaned up.  When I lowered India into the bath, the water instantly turned dark red.  I had to fill and drain the bath three times as the water would continually turn dark red from the blood that came off her little body.  It took us over an hour to comb the blood clots out of her hair. 

At one point while India was soaking, I stood up, my reflection in the mirror caught my eye.  I was covered in blood; it was everywhere.  My chest was still horribly bruised, deformed and painful from my recent surgery. My skin that wasn't smeared with India’s blood looked sickly pale.  My body didn't look familiar to me, it looked frail and old; I’d lost over 22 pounds in the previous 6 weeks. As I stood there staring at myself in the mirror, my eyes began to fill with tears. I tried to hold back the emotion but it was useless, I began to weep. Then I began sobbing, I sat on the floor with my head in my hands, tears rolling down my cheeks as weeks, months, and years of pain, despair, empathy and anger came tumbling out from deep inside me. 

At that moment, as I sat there looking at my tears dropping onto the tile floor, I realized they were bright red. My tears were mixing with India’s blood that was smeared all over my face.

I will use the words utter despair and absolute horror to try and describe that moment. But in all reality, I can’t accurately convey the emotions I was experiencing and I don’t believe I ever will be able to.  For me, just writing this story has been exhausting and taken me over 2 years to complete.

El Globo Grande 30 Years Later

Donnie Brainard holds a photo of his father and stepmother, Nick and Pamela Jones Brainard, who died in a balloon accident in 1982, the worst disaster in Balloon Fiesta history. Photo Credit Marla Brose/Journal

A breaking news bulletin cut in as Donnie Brainard, then 14, watched Balloon Fiesta coverage while eating breakfast with his grandmother. On the TV screen, a hot air balloon burst into flames. He saw two people hold each other as they fell to their deaths.

“I sure do feel sorry for the families of those people,” Brainard recalls his grandmother saying.

Those words still haunt him.

A few hours later, he learned that the two people he saw falling were his father and stepmother, Nick and Pamela Brainard. Pamela was four months pregnant.

The accident, the worst in Balloon Fiesta history, happened 30 years ago this October. Four people died, and five were injured. “It was such a traumatic event and such a huge event,” Brainard said, now 44, adding that it seems as if people had forgotten about it.

Since then, there have been other accidents at the fiesta, but none so catastrophic, in part because of the large size of the balloon, aptly named El Globo Grande. The 12-story-tall balloon was authorized to carry eight people, according to Journal stories from 1982, although it held nine people that day.

According to National Transportation Safety Board data, it appears there have been 11 balloon-related deaths at the fiesta, with the last one occurring in 2008.

That’s a tiny fraction of the tens of thousands of safe balloon rides over the last 40 years of the fiesta.

“It’s a very safe form of aviation,” said fiesta executive director Paul Smith, who stressed the fiesta’s main focus is safety and said “even one death is too many.”

A memorial to lost balloonists is scheduled to be dedicated at Balloon Fiesta Park on Oct. 2. Among those remembered will be the victims of El Globo Grande.
Clear, crisp morning

Sunday, Oct. 3, 1982, dawned crisp and clear. El Globo Grande one of the largest standard hot air

balloons made at the time was owned and piloted by Joe Gonzales of Albuquerque. Also on the ride that day were Dick Wirth, designer of the craft, and Christina Robinson, a balloon seamstress, both of London. They had come along to observe after Gonzales had complained of problems, according to
the FAA investigative report, cited in the Journal of Forensic Sciences. For many of the passengers, it was a last-minute flight.
Tom and Ann Speer, who lived in Lakewood, Colo., were introduced to the pilot that morning by Ann’s cousin.

C. Vincent Shortt, 35, from North Carolina, was at the fiesta promoting a motion picture he was producing called “Hot Heir.” He, too, arranged for a ride through an acquaintance. Barbara Mardyla, then 28, hitched a ride after meeting Shortt on the flight into Albuquerque.

The Brainards weren’t going to go to the fiesta grounds that day, Donnie Brainard recalled. Rather, they were planning to watch from the mountains. But Donnie remembers persuading them to go to the field, where they also nabbed spots on the flight.

The passengers clambered on, toting cameras with long telephoto lenses. Although mostly strangers, they chatted gaily through the hourlong flight. When, after 90 minutes, they appeared to touch down for a safe landing in a North Valley field, the ground crew broke out champagne to celebrate, according to a Journal story from 1982.

That’s when things began to go awry. Propane leaked out of a tank, hitting a burner and creating a fireball within the gondola while it was still on the ground.

It’s unclear in what order people began jumping or were thrown from the balloon. Shortt, Mardyla, Tom Speer and Gonzales all escaped while the balloon was low to the ground. Gonzales was on fire as he hit the ground. The heat and loss of weight caused the balloon to soar.

Ann Speer was still in the balloon as it ascended. Her husband recalls yelling: “Get out! Jump! Jump! Get out of there!” She finally flung herself from the gondola at about 30 feet in the air. He rushed under her to try to break her fall.

The others did not survive. Al Utton, the late University of New Mexico law professor who witnessed the event, said at the time that the remaining passengers were faced with “the cruel dilemma of being burned alive or jumping hopelessly.”

Christina Robinson and Wirth fell or jumped next. Nick and Pamela Brainard were the last to plummet to the ground.

Two propane tanks exploded after the balloon rose.

The probable cause report from the National Transportation Safety Board found that Gonzales had improperly made alterations to the balloon’s fittings and hoses attached to the propane cylinders. A subsequent report from the FAA was unable to determine whether a line or fitting in the fuel system had failed. Attempts to locate Gonzales for this story were unsuccessful.

Years to recover

Brainard said the crash put him into a tailspin that took years to recover from. He felt tremendous guilt for encouraging his dad and stepmom to go to the fiesta that day. He recently started writing about it on his blog as a way to confront his feelings.

“The level of guilt that I carried for the next 20 years was absolutely brutal,” he wrote. “No 14-year-old boy should ever have to shoulder this kind of responsibility. It warped my life in the most incomprehensible ways that you can think of. I feel incredibly fortunate to have survived.”

He said he’s been surprised by the popularity of the blog, where he also chronicles his daughter’s struggles with cerebral palsy and other aspects of his life. Brainard’s dad, Nick, was mostly absent from his childhood. But about a year before the accident, he and his wife, also called P.J., moved back to Albuquerque. Nick Brainard worked part-time at a law firm and part-time as a radio DJ.

In the blog, Brainard calls that year “the best 12 months of my life.” As an adult, Brainard has worked in the entertainment business and created the show, “Win Ben Stein’s Money.” He is currently working as an Albuquerque property broker at Maestas & Ward.

He said that, for many years, he didn’t talk about the balloon crash, but his wife encouraged him to write it down. His brother found the autopsy report and recently gave it to Brainard. He wrote that he was “rattled by the brutality inflicted on my dad’s young body.”

“It takes a lot of energy to relive it,” Brainard said. “It helped to get it out. It was very painful going through a lot of it again.”

Moving on

Three decades later, the survivors say they’ve moved on, but the memory of the accident will probably never leave them.

Shortt, then 35, suffered burns to his head and left hand. When he returned to North Carolina, he forged ahead with two ballooning-related projects: organizing a balloon festival in North Carolina and producing “Hot Heir,” a balloon comedy. He moved away from balloon-centric projects after those were complete, producing TV shows on country inns and historic hotels.

He didn’t go on another balloon ride for 13 years, when he decided to return to the Balloon Fiesta.

“I just felt I didn’t want the last experience I had in a hot air balloon to be a negative one,” Shortt said by telephone from Virginia, where he now lives.

Ann Speer, now 64, still has rods in her back where she broke it in three places and some chronic pain. Her husband, now 72, estimates that she was in the hospital for about a month in Albuquerque and off work for several more months after that. They both returned to active lives, even giving ski lessons, and now live in Arizona.

“We both picked up and continued to move forward,” he said. “I don’t think it’s had any lasting effect other than just bad memories.”

Barbara Mardyla now Gaiser returned to Ohio with singed hair and eyebrows only to find out that the local radio station had reported her dead.

“So when I did go back to work, everyone was saying ‘Oh my gosh, we thought you were dead.’” she said.

She withdrew for a while and saw a counselor.

“I didn’t talk to reporters,” she said. I just kind of wanted to go home and hide.”

Her mom is turning 80 this year and wants to go on a balloon ride. Gaiser is still deciding whether she’ll go along.

This article appeared on page A1 of the Albuquerque Journal