Monday, August 22, 2011

"2nd Opinion"

By 2011, India had been spiraling downhill at a very rapid pace. My little girl went from standing and walking assisted, dancing, sitting on her own and almost completely pain free to not being able to walk, stand, sit, dance and in constant pain to the point of not being able to attend school for a full day. Here is a video that shows India's gains and losses.

This has been a terrible experience for all of us, the helpless feeling as my daughter cries in pain is chilling.  Either Vikki or I were up in the middle of the night, every night trying to comfort India.

Until 2011, we had been putting our faith in a pediatric orthopedist from our home state.  This physician's bedside manner was rough but I believed this doctor was focusing on India’s needs, the "whole picture"; not just slice and dice.  This doctor said our only real option to reduce India’s hip pain was a very intense surgery called the McHale procedure.  To describe this procedure in the simplest way, they cut off the top of the femurs, leaving a void in the upper thigh that they fill with fat from other areas of the body.  This didn’t set well with us, something was very wrong.  In addition, this doctor put my little girl on a monthly Pamidronate infusion.  This wasn’t a pleasant experience and India was clearly not happy about it. The infusions made her sick and we saw no positive results. We were confused and scared.

As luck would have it, my wife came across a world renowned physician in New Jersey while reading published material related to cerebral palsy.  This doctors writings were absolutely amazing. I felt a new sense of hope with each word I read.  We immediately made the decision to book a flight to New Jersey and meet this man.

Our meeting was fantastic and to say I'm elated would be an understatement.  This doctor, Dr. Roy M. Nuzzo, was hands down the most knowledgeable, no bullshit physician I've ever met.  He took his time, hyper focused on us and was very concerned about the "overall picture" of India's life; she wasn't just another patient.

Dr. Nuzzo told us that the procedure that our doctor wanted us to do, McHale procedure, was not only inappropriate, but it would cause my daughter a lifetime of pain and infections. When I asked about other "replacement" surgeries, he didn't pause for one second with his response; NO.  Unlike other doctors who were willing to put my daughter through a year of traction/recovery, certain pain and no guaranteed outcome, he went the opposite direction. Dr. Nuzzo gave us an outpatient option that would take away India’s pain and allow her to get on with life and being a kid.

The first procedure he recommended was called an "Alcohol Block".  This is where the nerves causing the pain are treated with an alcohol solution that deadens them.  This lasts anywhere from 1 to 10 years or more.  Then he recommended a series of "Soft Tissue Lengthening" (My daughter had this once before).  I asked if India could do the things she loves after the surgery like standing and dancing.  Dr. Nuzzo told me that his instructions post surgery will be "let India get on with her life". Those were the sweetest words I'd heard in a long time.

Dr. Nuzzo also spent a long time explaining to me why the infusions my daughter was getting are not only useless but harmful.  He said that India’s previous physician should never have started these treatments, there was no reason and some of the outcomes that were promised were 100% false. There I sat feeling

I booked my child’s surgery on the spot.

I was incredibly thankful that we came across Dr. Nuzzo and especially after all we’d been through with India, I was once again reminded that doctors are "educated guessers" and I should never hesitate to do my research and get a 2nd opinion.

Dr. Nuzzo can be found via his website: http://www.pediatric-orthopedics.com


Sunday, May 2, 2010

"El Globo Grande"


My Father's Last Flight



The El Globo Grande on fire as it drifted towards the Rio Grande River.

On October 3rd,1982, the El Globo Grande caught fire, causing the gondola to explode. This picture was taken just moments after my father and pregnant step-mother were killed in this tragic accident. You can see in the photo that there is very little left of the “gondola” other than a portion of the superstructure. To date, this is the worst ballooning accident in New Mexico ballooning history.


My mother left my father in 1968 when I was only a few days old. The final straw was when he came home one night especially drunk. He was a full-blown alcoholic by this point but this night was different; he became physical. My father took me from my mother and forcefully threw her out of the house. She was 2 weeks out of the hospital from my birth and still had stitches in her stomach.  My father and I were locked inside alone and all my mother could do was watch us through the windows.  He stumbled about the house with me in his arms, eventually passing out.  My mother was able to get back into the house. She grabbed me, and a couple changes of clothing and left my father.  My parents were divorced shortly after and I’d only see my father a few times in the next 8 years.



My father in Albuquerque 1967


In 1976 when I was 8 years old, my dad wrote me a letter.  He wanted to re-connect with me. He was living in Colorado where he owned an insurance company.  Not long after receiving his letter, my dad let me know he was driving to Albuquerque to see me. I’ll never forget the day.  I stood out at the corner down the street from our house at the southwest corner of Los Alamos and Laguna so I could see him coming.  He was supposed to arrive at 2:00 pm.  I remember vividly looking into every car that passed by for my dad. At 8:00 pm,well after dark, my Grandmother Marion "Bama" Cornish walked down the street, put her arm around me, and held me tight as she walked me home; not a word was said.  I fell asleep that night crying with my pillow over my head so nobody could hear me.  I still can’t forget the feeling of being worthless, my own father had forgotten about me.  He never did showthat spring and I didn't see him for a very along time after that.










My dad’s life was intense. He was born to William Anton Rank and Mary Collaer. William, my Grandfather, was partners with and a very distant relative of Conrad Hilton of Hilton Hotels.  William was killed in a mugging in El Paso, Texas, when my father was a child.  As a result of my grandfathers’ murder, my father inherited millions of dollars when he was eighteen.  My father enjoyed his inherited money and lived the life of a jet setter.  He was drawn to Hollywood where he produced music and television.  My dad however,was just another young good looking rich kid who eventually was chewed up and spit out by Tinseltown.  He wasn’t cut out for swimming with the sharks.  He retreated to Colorado to rebuild his life.




One of the albums my father produced with partner "Sam Riddle"

Tract 1: http://snd.sc/OjWZIz

Tract 2: http://snd.sc/VsPnma

I eventually reconnected with my father and began going Colorado to spend time with my dad twice a year. This was absolutely an amazing time for me.  My life in New Mexico was chaotic and confusing; I was bouncing from home to home. But twice a year, I was with my “dad”, he was great and we had a ton of fun; he could do no wrong in my eyes.  I was never with him long enough to see his character defects, his human side.  I just saw the man who was always excited to see me, was new and exhilarating and lived a life that I desperately wanted to be a part of. 


I'm on the far right, then my half-brother Tom, dad's 3rd wife Martha and my father.


When I was thirteen, my grandparents let me know that my dad was moving back to New Mexico. They told me that he’d checked himself into a treatment center and when he got out, he’d permanently live in Albuquerque.  I was ecstatic.  I spent the next month fantasizing about how good my life was going to be with my dad home. My dad lived up to absolutely every expectation I had for him.  His first year home was an amazing year and to this day, it was the best 12 months of my life. 


My father and PJ at their wedding.

My father had remarried and his new wife, "PJ", was an extremely cool and beautiful woman.  We had so much fun together.  She had a great sense of humor,which made her a perfect stepmother for me.  My dad was working part time at a law firm and part time as a disk jockey at a local fm country station.   I used to love to go down to the station with my dad and just watch him work.  He had a wonderful deep voice and always said cool stuff.  One night, I went down to the station with my stepmother to hang out with dad.  My dad was pretty busy doing something so PJ and I started exploring the radio station.  We found another broadcast booth and started pretending to be disk jockeys.   We were singing into the microphone and saying the silliest things.  PJ really got into it and was acting like a complete clown.  Partway through her silly skit, I decided to play a joke on her.  I gave her an incredibly shocked look.  She stopped her routine and asked what was wrong.  I said, “the microphone is on, you’rebroadcasting over my dad!”  Well PJ absolutely freaked out.  She went tearing down the hallway to my father’s broadcast booth.  He was on the air, live as PJ slid into the room.  She was mouthing, “I’m sorry, I’m sorry, I’m sorry” over and over.  My dad, headsets on, cigarette in his hand, microphone to his lips, talking to 100,000 people over the airways gave PJ the funniest look I’d ever seen.  I was behind PJ in the hallway bent over laughing, snot coming out of my nose.  My dad shifted his confused look from PJ to me.  The look on his face went from confusion to a wonderful grin and obvious understanding of the situation. 

Dad signed off by saying “This is Nick Brainard at KRST; I’ll see you all tomorrow night.” He flipped the switch in the microphone, spun around in his seat and started to laugh.  PJ was still trying to explain that she’d drowned out his broadcast with the silly skit in the next room.  She was convinced that she'd been talking and singing to all the listeners out there in Albuquerque and she was mortified.  My dad of course knew this wasn't true and that I’d played one hell of a trick on PJ.  His laugh went from his chest to his belly; a deep cheerful laugh.  PJ was a great sport about my joke but I did have to watch my back for weeks after.  She never did get me back.

My father and PJ Christmas 1981


Although my father and PJ were not drinking anymore, they smoked lots of marijuana.  My great grandmother who we called “Granny” was the president of the African Violet Society.  She had a huge green room at my grandparent’s house that was filled with flowers.  Granny would help my dad grow his pot.  The two of them would start the plants in her greenhouse under the grow lights. Then, they’d transplant the marijuana into the back yard amongst the various garden bushes and trees.  I was fourteen, it was 1982 and I loved to swipe off my dad’s pot plants and get stoned.  I’m sure he knew but never said anything.

My father cleaning his "dope" with a little assistance from me.

By the fall of 1982, I was starting my freshman year in high school and my dad’s new wife was pregnant. It was a happy time.  For the first time in my life, I felt completely secure.  It was also time for the Albuquerque International Balloon Fiesta.  This event draws up to 500 + hot air balloons; it’s amazing.  Since PJ was new to Albuquerque and had never seen it, my dad decided we needed to take her the next morning.


My freshman high school ID - 1982

That evening, I got a call from a really cute girl I’d met at the beach in La Jolla earlier in the summer.  Her name was Erin, she had blonde hair, and I had a huge crush on her.  Erin was in Albuquerque for a couple of days and wanted to go to a movie with me the next day.  Of course, there was no way that I was going to the balloon fiesta now!  I was an Albuquerque native and had already seen it.  But a blond cute girl asking me out on a date, well that just doesn’t happen every day and my hormones weren’t going allow me to pass up this opportunity!


"Erin" in La Jolla, California 1982

As my dad and PJ got ready to go home for the night, I told them that I couldn't go to the fiesta the next day.  My dad told me that was fine and they'd decided to go up to the top of the mountains to watch it from there. The Sandia Mountains tower over Albuquerque.  There is a spot at the top where you can look down at the entire city.  I was surprised that my father wanted to take PJ up therefor her first Balloon Fiesta experience.  It was a long drive and would be nothing like being at the launch site.  I spent a long time trying to convince my dad to not go to the mountains. I told him that PJ would have a much better time walking through the balloons as they inflated and launched.  It is a breathtaking event to be a part of.  I persisted until my Dad finally relented and promised to take PJ to the fiesta instead of the mountains.

The next morning, I awoke early; I was excited to go on my date.  Granny and I where the only ones in the house.  Both my grandparents and parents had gone to the balloon fiesta.  Granny and I were talking about my date with the cute blond from the beach while we ate breakfast.  She wanted to know all about the girl and what we were going to do.  Of course as my words told her about going to a movie but my hormones were telling another story!  The television was on; live scenes of the balloon fiesta were coming in over the airwaves.   As we were talking, a “breaking news” broadcast came blaring out of the television.  The reporter announced that there had been a balloon crash and the following scenes were not suitable for children.

The screen jumped to a very large balloon whose’ gondola was filled with passengers.  As the balloon landed we could see somebody jump out as if something was wrong. Flames appeared and the balloon began to rise back into the air. Several more people jumped out, the quick drop in weight caused the balloon to ascend rapidly.  By this point, both the gondola and balloon were on fire.

As the balloon reached a substantial altitude, there were a series of explosions and a lot of fire rolling in every direction.  I sat there with Granny, our attention fixated on what we were watching.  Yet another large explosion followed by two people falling from the balloon.   These people were holding onto each other as they fell to their death.  Smoke following their bodies as they plummeted to the earth.  The impact was brutal and there was no doubt that they could not have survived that fall.

It was a terrible scene, we’d just watched 2 people fall to a gruesome death and there was no doubt that other passengers had died as well.  People were scurrying all over the place trying to help.  The camera would occasionally focus back in on the balloon, which was engulfed in flames and disappearing over the horizon.  Until my dying day, I’ll never forget Granny, without taking her eyes off the TV screen saying, “I sure do feel sorry for the families of those people.”

A short time later, a friend came over to hang out and get stoned with me.  We went out into the back yard, lit up a doobie, talked about the balloon wreck and started throwing the football.  Partway through our smoke, my friend glanced into the house.  From the back yard, you could see the street in front through a large window.  His jaw dropped wide open, he turned back to me and said that a police car was parked out in the street.  I froze; I knew that they were there because of my dad’s marijuana plants.  Before I could say a word, my friend ran and jumped over the back wall.  I ran through the house and got to the front door just as the policeman knocked.

When I opened the door, there was a policeman in a suit and two uniformed officers.  I thought I could see my father and PJ standing out in the street, their backs to me.  The police came in and to my surprise didn't say a thing about the pot plants.  They told Granny and me that there had been a terrible wreck involving Mr. and Mrs. Brainard.  The policeman didn't say that they were dead; he just said “terrible wreck.”  Granny, being the wise old soul she was, looked the officer in the eye and said “are they dead.”  There was a long pause while the policeman stared at me.  He then looked back to Granny and whispered “yes.”

Rescuers on scene of the El Globo Grande crash

Granny sat there with her hands over her face, crying.  The policeman gently rubbed her back and tried his best to comfort her.  I was still standing there stunned, my grandparents had been killed.  I’d never experienced anything like this before.  I had no way to process what had just happened.  I stood there frozen, trying to make sense of it all.  How did it happen, where was the car wreck, why did it happen?


Granny sitting on my fathers lap in 1967

After a few moments, I looked outside towards where I thought my dad and PJ were. I needed my dad right now, I needed to hold him. I ran past the police officer and out the front door towards them.  Just as I ran out the front door, another car pulled up into the driveway.  As I ran, I looked over to see my grandparents pulling up. They were alive.  I stopped cold in my tracks.  I could see the wide-eyed look on their faces as they took in the scene taking place in the front yard of their house.




I was shocked, I’d just been told that they were in a wreck and were dead.  I was trying to comprehend what was happening, did the police have the wrong family? 

I turned my head back towards my dad and PJ.  They were no longer looking away from the house, they were looking towards me and they were not my dad and PJ, they were two more police officers dressed in civilian clothes.

In an instant, my world came crashing down around me.  Everything went into slow motion.  I couldn't stand, my legs didn't work.  I fell to the ground. I watched the young police officer run across the yard to intercept my grandparents.  I could see my grandmother’s face grimaced with agony as she was told that her oldest son was dead, the officer had to help her sit down; she too couldn't stand.  Then my grandfather, the toughest man I’d known in my life, started sobbing like a child.  It was an absolutely horrible scene.

I clearly understood now that there was no car wreck, this had nothing to do with a car.  My dad and PJ were the two people we’d watched being blown out of the balloon, falling to their death.  I’d just watched my parents die a drawn-out and violent demise.  I’d watched the whole thing not knowing it was two people who I dearly loved. Granny had said that she felt sorry for the family of those people and it turned out that we were those people. I don't know if this was Nick, PJ or another victim. 

I went into a deep shock that lasted for a long time.  To make matters worse, I got a little lost in the confusion.  My father was so popular and loved, not only in the family but in the community.  People were flooding the house and everybody was beside themselves with grief.  I can remember sitting in the corner, no able to move, not able to cry, not able to do anything but sit there, stunned.

At one point, a family member noticed me sitting by myself in the corner.  She walked up to me, rubbed my head and said that she had just the thing to make me feel better:she handed me a joint.  This was such a common solution to problems with my family, inebriation.

The person who really touched my heart and allowed me to grieve in the days following their deaths was my uncle Dar.  I was sitting in my father’s van. It had just been towed back from the Balloon Fiesta parking lot. I’d been sitting there for a couple hours.  It smelled like my dad and PJ so there was nowhere else on the face of this earth that I wanted to be.  Dar came out to check on me.  He opened the door and asked me if there was anything I wanted. I said “I just want them back.”  Dar grabbed onto me and we both started crying.  It was really the first time I’d broken down since their death.  I’ll always be grateful to my uncle Dar for that moment. I believe in my heart it’s what I needed to survive.

The next few weeks were a nightmare.  All the television stations kept replaying the scene; we didn't dare turn on the TV. People were coming and going and there seemed no time to decompress and grieve.Then I watched as people started to come and take my father’s things, right in front of me. I don't think the thought even crossed their minds that my father’s and PJ’s belongings should go to their children.  It was awful.  Their personal belongings were being carted off as if we were having a free yard sale.  People who had little to do with my father helped themselves to his belongings.  As I write this today, I still have a tough time keeping my resentment in check for these individuals.  I wish I still had every item of my fathers.  The few that remained, my brother and I have cherished as if they were the Hope Diamond; they're irreplaceable to us.  I've often wondered if anything was given to PJ’s daughter. I've been reconnected to her for a few years now but never had the courage to ask.

During the period that the looting of my father’s belongings took place and the constant stream of people flowing through the house, I found the perfect coping mechanism:Alcohol.  My grandparents’ house always had booze here and there but now it was overflowing.  People were bringing liquor by the gallons and nobody was paying close attention to me.  I found that a cup full of booze, the headsets over my ears to drown out the sounds, and Dan Fogelberg playing on the 8 track put me in a frame of mind that I could handle.  This was the beginning of a long and brutal battle with alcohol and drug addiction for me but I’ll save that story for another time.

It came time for my father’s funeral and this too was a terrible experience. There were so many people and I only knew a few of them.  I can remember during the service, I was up near the casket, I looked into the audience and there were two girls I went to school with; Kerry and Tanya.  I was grateful to see their faces, two friendly faces that I knew and liked very much.

When they put my father’s body in the ground, I couldn't believe what I was seeing.  I’d just been with him at the radio station having fun. He’d just let me drive on the road without my license!  We'd just sat in his cool green van and listened to music with PJ.  This couldn't be happening. I couldn't go back to my old life!  He couldn't leave! And that’s when it hit me; I’d talked my father into going to the balloon fiesta instead of the mountains. The realization that I’d killed them spread throughout my body.  All these people watching his body being lowered into the ground, mourning this tragic loss and it was because of me.  I couldn't look anybody in the eye. I just stood there staring at my father’s casket.  I desperately wanted to touch his coffin and say goodbye but I couldn't bring myself to move.  To this day I still regret not walking over and touching his coffin.

The level of guilt that I carried for the next twenty years was absolutely brutal. No fourteen- year-old should ever have to shoulder this kind of responsibility.  It warped my life in the most incomprehensible ways. I feel incredibly fortunate to have survived.

My addiction took me to exceptionally dark places.  I lived a viciously destructive life which put me in many deadly situations that normal healthy people wouldn't dream of getting near.  After all these years of reflection, I know that I was in a constant state of deep depression.  

Postscript

I was compelled to relive this experience when my brother tracked down the autopsy report for my father. I still don't understand why he did it. He gave a copy to me twenty-seven years after his death.  I was rattled by the brutality inflicted on my dad’s young body.  I’d always thought that although his death was clearly violent, his body was intact and relatively unscathed.  I believe that this was a coping mechanism of a young boy.  All these years later, I now know better and it hurts as much as it did in 1982, if not a bit more.

2012 - Albuquerque Journal Article


2013 - Surprise.

Various Photos                                    Nick and PJ's wedding



Thursday, April 29, 2010

Circle of Friends - Our Day in Hell - Part 3




The tests the doctors performed on India didn’t take long but it did take some time to get the results back. Within an hour the doctor came out of India’s room with blood on his blouse. I didn’t know if India was alive or dead and the doctor showed no emotion as he walked down the hallway to us. He came up to Veruca and me, let out a sigh and said that the procedure was a success and India was stable. The doctor told us that the operation hadn’t gone the way he’d planned and India had crashed right in the middle of the procedure. This was the cause of the mayhem we saw and why it took so long. The doctor said that he’d taken the other IVs out and things should be smoother now.

Without any real discussion or planning, Veruca and I began to create the best environment possible for our little girl in this cold sterile place. We brought in a CD player and dozens of CD’s. We put some very cute little dolls wherever we could find room and put a hanging butterfly over India’s head. Either Veruca or I were by India’s side twenty-four hours a day.  We were always playing music, talking, or reading her books. I now understand that Veruca and I did all this because it was the only way that we could cope with our impossible situation.  We had to know that we were doing whatever we could to bring some normalcy to India’s and our lives while in this critical care unit. 

Family and friends, including Bama, took turns sitting by India reading books out loud, talking, singing or even playing games; anything so India could hear familiar voices and sounds.  Eventually, my little brother Tom took on the night duty. He was a lifesaver for me during this experience. A plus for him was that one of the night shift nurses was cute and I believe wanted to play doctor with him; badly. 

During our stay in the PICU, we saw a lot of very sick children. None stayed even close to the length of time India did. I noticed there was not a single family who so much as stayed the night as their child was in intensive care. I was really confused by this. The nurses told me that we were the anomaly, most families don’t stick by their Child’s side the way we were doing. 

Of all the children that were in the PICU while we were there, there’s one I’ll never forget. He was a young black boy, about 12 years old. He was a foster child that had been locked in a closet for months. When they brought him in, he looked like a concentration camp victim. He was awake, looking around and communicating. His only family was the foster parents, who were now in jail. He had no friends, he was all alone. This poor little boy was in the PICU, all by himself, living in a world that is beyond my comprehension. The only people who came to see this kid were two incredible Mormons. They’d never met the boy, had no connection with him.  They only knew of him from the front-page-news of his ordeal. They brought him food, sat by his side, and of all the things that brought me to tears, they placed a little stuffed bear on his bed next to him as if he were a baby.

Despite the hospital and Mormon couple’s efforts, the boy died. I believe he passed away in part from what they call “failure to thrive.” I’ve always hoped that the kindness of that couple truly made his last days better. It was hard for me to tell, the poor boy had been so abused.  I’ve always also wondered if Karma took care of the foster parents.

As time went on the nurses became worried about Veruca and I. We were hardly sleeping, and eating was almost impossible. I believe Veruca agreed to take a sedative at one point, but I was too afraid to. I couldn’t imagine being put in a deep sleep just to wake up and find India’s room empty and clean; her little body gone. To help us the nurses kept the room that adjoined India’s open for Veruca and I. There was a sliding door that we could keep open. This helped; Veruca and I would take turns napping with the door open. 

A few days after India’s tests were performed, the doctors asked to meet with us. It was late in the day and India hadn’t been doing so well. We’d still not slept much, we’d hardly eaten, and our spirits were crushed. The worst part was that we’d not been allowed to hold our daughter since we arrived at the PICU; it was against regulations. Every bone in our bodies screamed to hold and comfort India, and not being able to do so was torture.

When the doctors arrived, we all sat down next to India and they started explaining the test results to us. They said that India’s seizures had never stopped, even though outwardly they’d seemed to. This was the worst case scenario imaginable. They then went into some very confusing and intense conversation about India and what was going to happen. It really wasn’t a conversation—Veruca and I just sat there listening. These doctors were talking to us as if we were doctors instead of tired, emotional, young parents. We didn’t understand a word.

After the doctors left, the nurse who’d been present asked us if we understood what had been said. We’d become very close to this nurse, his name was Tony. Tony sat us down again and told us that the doctors said that India wasn’t going to make it. He said that they would come back tomorrow and ask us to make the decision of keeping her on life support or not. He said that it was our decision and not to rush into anything. Tony explained that the doctors felt that India at this point, was already a vegetable.

Through my reliving this story for you, the reader, I’ve often tried to express the smell, taste, look and feel of the emotions we were going through. The sensation at this moment I’m not going to even attempt to explain, it would be futile. Veruca and I just sat there, too tired to cry, to stunned to talk, and physically unable to do anything else. Tony the nurse told us that he’d be back at 11:00 pm at shift change and he’d want to talk to us again; it was important. He left us alone; we didn’t move a muscle.

The only thing I could think of to do was borrow my father-in-law’s truck and drive with Veruca to my dad’s grave. My father and his wife had been killed when I was a teen in a balloon accident. He hadn’t been a very good father for the exception of the last year of his life.  Veruca and I drove to his grave, sat down and told him that he owed me one. I said to my father’s tombstone that if there was anything he could do for India, he needed to do it right now. Then we drove straight back to the hospital.

Word of what the doctors had told us spread quickly. Somebody mentioned that we should baptize India before she passed. We weren’t religious but we wholeheartedly agreed that India deserved this so we decided to have a ceremony in celebration of her life. An old friend of ours by the name of Aaron Hendon agreed to perform the ceremony. Aaron was a transplant to Albuquerque from the east coast. Aaron was a Jewish bagel maker and owned a wildly successful bakery and restaurant. He’d become an ordained minister from one of those ads in the back of Rolling Stone Magazine. This made Aaron perfect for the ceremony and I’ll always be grateful to him for his kindness and efforts.

When it was time, Aaron had all of us, perhaps twelve family and friends, stand in a circle around India’s bed. Everybody held hands while he said a few beautiful words. Aaron then asked each person to talk about India. It was such a touching ceremony and a very emotional scene. Every single person had beautiful things to say about India. There was a ton of love and support in the room and for the first time in weeks, laughter. In the middle of it all was my baby, lying there peacefully. 

After our ceremony was done and everybody had gone home, Tony the nurse arrived. He had told us earlier in the day that he wanted to meet with us at shift change and it was important.  Tony walked in the room and asked Veruca to sit in a chair next to India. He walked back to the hallway, looked both ways, and then shut the door. He turned around and told us a story. He said that at his last hospital, they had a policy just like this one now: a child on life support could not be held by the parents. He then said to us that his biggest regret in his entire career was when he had a family in a similar situation as ours. He followed hospital procedure and didn’t let the parents hold their child before she died. He explained that he’d never make that mistake again, even if it meant his job.

We knew what Tony was about to do. Veruca and I began crying, it was a truly bittersweet moment. We were so happy that we were about to hold our daughter after all this time. But this was going to be the last time we’d ever hold our child while she was alive. One of the most emotional moments in my life was when Tony ever-so-gently picked up India, with all her monitor lines and life support tubes intact, and placed her into Veruca’s lap. I stood there crying. But my tears were happy tears. Veruca was glowing again the way she did the very first time she held India. Veruca’s eyes were sparkling and her cheeks were red. Tears were falling down her face but they t looked like my own, happy tears. Veruca began talking to India in such a sweet voice that only mothers can do. It was one of the most beautiful sights I’ve ever seen.

Tony then told me it was my turn. I sat in the chair and Tony placed India in my lap. It was a beautiful moment but it became very painful to let her go. I did not want my moment with India to end. I could feel the warmth of her skin and appreciated every breath she took. I don’t know if I’ve ever been as present in a moment in my life as I was then. I believe many people spend their entire lives meditating to reach the point I was at. I reluctantly let Tony take India back to her bed.  I can’t even begin to attempt to explain what it’s like to know that you’re holding your child for the last time.

That night, I fell asleep sitting next to India with my head on her bed, holding her hand. I had fallen into a deep, exhausted sleep. When I awoke, it was early morning and we were all alone.  I sat there for a moment and soaked in all that had happened the day before. The heart monitor and ventilator were making their usual noises and I could hear the nurses outside in the hallway. I stood up and began to rub India’s little head, wondering if this was going to be her last day with us. I leaned over, kissed her cheek and told her I loved her with all my heart. I didn’t know if she could hear me or feel my presence. The doctor had used the word vegetable so maybe her brain was already gone.

Before India’s hospitalization, I’d often talk to her in a very silly, high-pitched voice. I’d use this voice when I’d talk to my kitties but when India first heard me doing this she’d smiled the biggest smile ever. So I used this voice often when we’d play; she loved it. I started to talk to India in the silly voice now. I knew I was trying to reach into the past, before India’s seizures destroyed her little body. I wanted again to be the proud and happy father with the healthy glowing baby. I began to cry as I stood over her ravaged body. All I could squeak out in my silly voice was “I love you baby girl, please come back.” I’d finally realized what the doctors had said the day before and it was having its full impact on me now. My lips were on India’s forehead as I cried and repeating “I love you baby girl, please come back.” 

After a few minutes, I lifted my head just above India’s. Her little face was horribly swollen. The tip of her tongue was shriveled, dark brown, and cracked from lack of moisture. Her eyelids had a crust on them and her skin was slightly grey. But she was my child, I saw a beautiful little girl with bright eyes who made the sweetest little noises; she was perfect. 


By now Tony had come in to check on India. As I began to move out of his way, I leaned over, kissed her cheek, and told India one last time in the silly voice that I loved her. As I stood up, I didn’t believe what I thought I saw out of the corner of my eye. I turned back once more and said again that I loved her in my silly voice. It happened again; I wasn’t seeing things. India, with her cheeks trembling, managed to give me a tiny smile. I was dumbfounded, literally dumbfounded. I looked up at Tony for confirmation of what I’d just seen. He stood there motionless, staring at India, equally as stunned. Tony cracked a smile and said “I’ll be damned.”  He asked me to make my voice again. Once more, my little girl’s cheeks trembled as she pulled back a smile. I began sobbing; the happiest tears of my life were flowing down my cheeks onto India’s face as I kissed her again and again. Her smiles didn’t stop and haven’t to this day.