Today is the second anniversary of the day Johnny died.
People have been very kind with their words and their "tiptoeing" around us.
Tommy woke up with an inflamed throat he's been developing for the past few days so I honored his seldom made request to allow him to stay home from school. Vitamin C, Omega-3 (fish oil), a dose of honey, tylenol alternating with ibuprofen and a few hours extra sleep and he is feeling better. Definitely school tomorrow.
Rick Carroll, brother of Chris and...(forget that litany...he has 13 brothers and sisters) emailed a saying that will stay with Tommy and me as long as we live: "When a loved one becomes a memory, a memory becomes a Treasure."
The thought then occurred that everyone at some time must put the past behind and look toward the future. That's not as simple as it sounds. Each experience you've had, each person you met was akin to a teacher adding something, for better or worse, to your life's education. Not progressing to the next "lesson" is where obsessions and other aberrations take form. So you keep a bit and leave a lot.
Of course somethings we must never forget: the horrors of the Nazis, 9-11, Bill Clinton letting our troops die for naught in Somalia, the evil hypocritical bastards hiding behind their positions as government officials or psychologists or clergy or peace or civil rights or animal rights activists, the demented acts of child rapists and murderers...you get my drift. If you are an evil, lying bastard, you are an evil, lying bastard period.
I truly understand the aboriginal hunter's prayer for forgiveness by the animal he's about to dispatch. I think it's more honest and realistic than the saying that we "must always forgive, but never forget." Some say that concept's origin is a play on the Biblical reference that in His forgiveness, God "forgets" our transgressions in that moment but never forgets what we are capable of in our imperfect human-ness. More likely it was some pious attempt to put an end to blood feuds between individuals, families, tribes and nations. It's a concept that always troubled me because for the most part I believe it's largely BS.
So there are persons and actions I will not forgive, nor forget.
On this day, I look back on what led up to Johnny's death in an effort to decide those memories that are to become treasures as well as those that are to be forgotten, forgiven and those for which I will do neither.
The search for Johnny's initial heart condition begins, for me, the night I woke up in a pool of my own blood.
I tend not to react as most do. The morning we rushed Johnny to Children's Hospital the first of many times, I was quiet and reflective. The night, more than a dozen years later when he was rendered a quadriplegic after his heart stopped and ambulances (two) arrived outside his mother's house, I watched in expressionless silence. When my mother died I displayed no outward emotion, a fact that a few idiots in my family grossly misinterpreted. So when I saw the spreading blood my reaction was pretty much a simple "What the F***?"
Johnny's mother was not forthcoming with information unless pressed...and then you had the option similar from choosing from a Chinese restaurant menu of deciding from the multiple explanations issuing from her of what was more or less accurate...most as it turns out were probably less.
Let me give you an example.
Six or eight months after Tommy was born, I asked her when plans for Tommy's Baptism in the church would be finalized. My sister, Elena, was to be his Godmother; her brother Dick the Godfather. I was brought up to believe a newborn should rarely leave the house before he or she was Baptized and that was at the latest within the first month or so after birth. As the weeks grew into yet more months from the designation of his Godparents, I was beginning to believe Ohio natives dwell in a universe separate from the rest of us.
So I pushed.
She blurted out the name of a friend who was an Amway distributor and apparently some sort of Elder in the Mormon or Mennonite or some such church. "He baptized him!" she said.
"No, he didn't," I replied. "He's not Catholic."
"I did it," she said in the next breath growing very agitated at having to come up with an answer other than the truth.
She must have forgotten that I went through 12 years of Catholic elementary and high school as well as four at a Jesuit college. "Sorry, but that only work's in an emergency if the baby's going to die."
She huffed off out of the kitchen leaving the question unanswered.
Some months later while she, the boys and their step sister, Emily, were on a trip to Ohio to visit her parents (I was not invited although sometimes I got the idea that her mother felt more comfortable around me than with her own daughter) I received a phone call telling me that Tommy was to be Baptized that morning with her sister, Jennifer, standing proxy for Elena. She said she didn't want to invite anyone from my family. Elena was in tears. My mother was furious.
Back to the night of blood-soaked sheets. When finally I discovered that she brought an STD (she completely failed to mention) to the marriage, I asked her about it. In rapid fire with one explanation quite literally following the other, she explained, "Oh, my first husband had the same thing!"
Oh joy. Somehow I did not feel a simpatico connection. I will say I found out much later he is quite different from the expletives included descriptions she used about him. In fact, nearly word for word, she painted me with the same accusations she used for him.
"Did he give it to you?"
"I got it from a JEW from New York I dated." She never mentioned a name, only that he was a "JEW" in capital letters.
That was quickly followed by: "I was raped by a date at gun point!" Different guy. She never mentioned his religion, only that he worked on Capitol Hill.
Interesting. So which one was it? She never answered. Although during the divorce proceedings she claimed that she did not know she brought anything of that nature to the marriage. So why identify ...oh, never mind.
I did a bit of google research through a variety of medical journals and found that one of the effects of this particular STD is a constriction in fetal blood flow. Fit the cause of the failure of Johnny's left ventricle to form. To this day I don't believe any study has been performed looking into the percentage of hypoplastic left heart babies who had parents with an STD. I believe more than a few lives would be saved if this vector is ever studied.
In my mind at least, that seemed a reasonable explanation for Johnny's initial heart condition versus a random or deliberate act allowed by a history-intervening God.
Still there were other acts, even other people who I believe played a role in the path toward Johnny's death.
(To Be Continued...)
Monday, March 12, 2012
Wednesday, March 7, 2012
Part III: The Words and Memories are Getting More Difficult
Every parent is proud of his/her child/children. I am proud of both of mine: Johnny and Tommy.
Before Tommy appeared, Johnny could not have been a cuter, better, more mischievous toddler. And although his heart lacked the mass and chambers of his peers, it was huge (in the sense of embracing life and others) nonetheless.
By nature Johnny was cautious. I tell the story ad nauseam of how I would sit on the couch with my feet on the coffee table and my legs would form a barrier to both Johnny then pulling himself along standing upright by holding onto the sofa edge and later to Tommy when he was a toddler. Johnny would get to my "leg bridge" and stop. He'd look the length of my legs, then look over them at what might lay beyond, then scan them yet again. Finally, he would slowly start the climb over making certain that nothing harmful would meet him. Tommy, on the other hand, would scoot up to my legs and dive over headfirst without the faintest hesitation or concern of whether the floor, a boogie man or a thousand-foot drop might await him.
Both boys had their own charm. Johnny never met the first sunbeam that didn't turn his skin into a warm tan. Pushing him through the local Safeway in a grocery cart, I would be greeted by random Hispanic women who would stop us and comment on the beautiful tone of his skin. I would smile and thank them. Tommy has no skin pigment for the sun to warm and brown. But he was born with the most wonderous head of shimmering three-hued hair. It wasn't really red so much as intermingled layers of light orange, brilliant blond and shimmering gold. Both boys were very polite to those around them. To this day, Tommy is a hugger when bidding friends and relatives goodbye.
I will never erase the memory of one of Johnny's countless visits to the Children's Hospital cardiac clinic where they monitored his odds-defying progress. Johnny was barely a week or two into walking with confidence when we arrived. Across the room on a seat near the check-in window was a mother and her few month old infant. The baby was crying. Johnny watched intently. I watched him. He then turned to the bag every parent carries when they venture forth with a baby or toddler. It's always crammed with diapers, a change of clothes, wipes, plastic bags and at least one milk-filled bottle. Johnny took his bottle from the side pouch and with it held in his outstretched hand walked across the room to the crying baby. I didn't know whether to smile, laugh or cry. But I knew then as I feel now writing these words that I could not have been more amazed or proud.
This is a difficult time for me...and for Tommy. March 22, 1990 was the day Johnny was born. March 12, 2010 was the day he died. Maybe that is why I'm writing this now.
From the time of his diagnosis until the age of four, Johnny's life was a mix of typical infant and toddler experiences and visits to doctors and what seemed like a second home, Children's Hospital for invasive catheter checks and procedures dealing with the vessels coming from his heart and even more invasive heart surgeries I've already mentioned.
I remember a business trip to Georgia. I was standing in the headquarters office of Glock USA talking with Paul Jannuzzo, a good friend and one of the finest men I've had the honor of knowing. In came a bear of a man, limping a bit. He was the sales manager. I can't remember if he was a former policeman or military. He announced that was recuperating from a catheter procedure where they threaded a tube from his groin to his heart to have a looksee. He groaned that it was the most painful experience he'd ever had. I offered my sympathy but could not help but mention that my son, Johnny, already had four. I didn't mention that not once did he complain.
After every procedure it was my role to spend the night in the hospital with Johnny. I got to know the nurses and became pretty proficient at changing his diapers and bed linen. To this day, I marvel at the roll, tuck, unroll system they use in replacing soiled with fresh blankets and sheets without removing the patient from the bed. More than once a nurse would astound me with the complement that I was the only "dad" they knew who would change a dirty diaper. I really loved the personnel there. A number, as fate would have it, proved dear friends many years later as parishioners at St. Jerome in Hyattsville.
While waiting in the playroom for news of one of his procedures, I glanced up at the name tag on the nurse who had just come bearing news from the surgical suite. I saw the name "Mize" and got tongue-tied asking her if she was "Greg Mize's husband." After an embarrassed laugh, she admitted that Greg was her husband.
Greg, then a DC Judge, and I had a long history in Washington politics. I worked for the National Rifle Association. Greg worked as the right hand man to DC Councilman David Clark who was forever trying to pass laws and debate me and others on the evils of firearms. Despite being on opposite ends of the political spectrum, Greg and I developed a mutual respect that grew into a friendship. Turns out he and Marissa had a wonderful family including a teenage boy who played baseball for St. John's, my old high school where Johnny wanted to go and where Tommy is now a Senior. Greg and I played softball against each other when I was at NRA. I have no idea who won. I only remember hitting him with a cross body block that sent Greg somersaulting over my back in an attempt to get to first base and that Councilman Clark was playing in a pair of Bermuda shorts, black dress shoes and black socks...a total dweeb!
I remember watching with humor and awe how at age three or four Johnny responded hours after returning from either the Glenn or Fontan procedures. Can't remember which.
For weeks before an operation I was a mental, emotional and literally physical wreck. Suffice to say I literally lost a great deal of blood. No exaggeration. I mean physically, not figuratively.
This day as I walked up to Johnny's bed, he was lying on his back. His chest was bandaged but his legs were crossed as if he were watching the tide from a lounge chair at the ocean. All he needed was a huge cigar and I would have thought he was pretending to be his grandfather or Groucho Marx.
I think he actually looked forward to each stay at Children's. Not so much because he was into surgeries but because they had a terrific playroom and all he wanted was for me to let him stand on the wheeled base of the pole holding his IV bag and with him holding the pole with both hands push him down the corridor to one of the toy cars he would get in and drive around the room. Yours truly was the plastic auto's engine.
Traditional wisdom says having a child with a life-threatening malady drives many parents apart. I truly believe that if the match was built on solid personalities with two individuals committed in faith, trust, strength of character and love that it builds a stronger bond. Unfortunately I began to focus on the fact that things between us were not so sound or solid as I thought...on almost every level.
Early signs came during doctor visits when Johnny's mother would say and do things that simply clashed with reality.
I had the habit of personally thanking any doctor, nurse or med tech for whatever service they gave Johnny. I wanted Johnny to grow to appreciate and acknowledge kindness given by others by having him say "thank you" after each visit. One day after a nurse had a particularly difficult time finding a vein to take a blood sample, his mother scolded me for "forcing" him to thank the folks for their service. She said she didn't believe you should "thank" someone who "painfully tortured" your child. I had a very difficult time trying to figure out what was torturous about a sincere effort to keep Johnny alive.
Later when Johnny was showing signs of respiratory difficulties, I listened intently as the doctor asked about allergies. Not once did his mother acknowledge that a dog, two cats, and a cage full of birds resided with him. I collared the doctor outside the office and provided that information. Despite the doctor's recommendation that Johnny undergo the standard testing to identify allergens, she absolutely refused to allow him to undergo such a "painful procedure."
At his pediatrician's office, she said Johnny suffered from exercise-induced asthma. She asked when did that phenomenon morph into "real asthma?" I must haved winced at the question because the doctor, a very talented Vietnamese woman, glanced at me and said "it is real asthma." It turned out that the real motivation for the visit was to get the doctor to officially declare that Johnny needed to nap during physical education period at school, not exercise. The doctor said her daughter has asthma and that exercise is the best approach when dealing with the problem. His mother didn't like the response and changed pediatricians.
A few years later when she was lobbying for Johnny to get a pacemaker, his then cardiologist, Dr. Sharon Karr, stated on the record that the implant was a precaution and not dictated by a decline in Johnny's health under my care. His mother's reaction was to change cardiologists.
One day Johnny said he wanted to play basketball at St. Jerome School. His mother said they would have to check with his heart doc, the new cardiologist, Dr. Benheim who was part of the same practice. Dr. Benheim told her that basketball would be a great activity for him. As we left the office, Johnny was smiling...it was a smile of happiness. Outside she told him "I don't care what the doctor said. You are not playing basketball!"
Doctors who disagreed with her were not the only medical personnel with whom his mother clashed.
On one occasion, she told me I had to go talk to the office administrator at Dr. Karr and Dr. Benheim's office. She said she was treated abusively during the last visit. I was puzzled because the office administrator/manager always appeared very professional but also very helpful and cordial.
I drove to Virginia to see what the problem might be.
Once there, I explained the nature of my visit. The office manager was a no-nonsense individual. She got right to the point. Johnny's mother arrived about a half hour late for his appointment. She got irate when asked for the referral from his pediatrician. She did not have the necessary referral with her. The manager offered to call the pediatrician's office to have one faxed over. Turns out, if I was to believe the office manager (and I did), Johnny's mother continued to get very heated with her language and demands and acted as if it was the office manager's fault that she didn't have the paperwork. It was not the first time his mother was late for an appointment or lacked a referral.
During one of Johnny's hospital stays, his mother told me to tell the night nurse not to wake him to take his blood pressure etc. I decided to check with the nursing staff before making such a request. I was told that it would be impossible to honor such a request because of the demand of so many patients. On yet another stay, a male nurse, who like most of the nurses there had been administering to Johnny for years, pulled me aside and informed me that Johnny's mother was verbally abusive to pretty much all of the nurses on the floor but mostly to those of minority ethnic origins. I really was shocked.
Then I noticed that most of the nurses treated us differently. They all adored Johnny. The black nurses laughed and joked with me as if we grew up together. With her, they were a bit standoffish...as if she were an authority figure. I normally just wrote it off as a response to her acting more like a wannabe doctor than a mom. She had a habit of picking up medical jargon and using it in her everyday conversation. If you paid close attention, as did the doctors and nurses, you quickly realized that although the words sounded right, they were almost always used incorrectly...very much like asking if exercise or activity induced asthma would become "real" asthma.
(To be continued...yet again)
Before Tommy appeared, Johnny could not have been a cuter, better, more mischievous toddler. And although his heart lacked the mass and chambers of his peers, it was huge (in the sense of embracing life and others) nonetheless.
By nature Johnny was cautious. I tell the story ad nauseam of how I would sit on the couch with my feet on the coffee table and my legs would form a barrier to both Johnny then pulling himself along standing upright by holding onto the sofa edge and later to Tommy when he was a toddler. Johnny would get to my "leg bridge" and stop. He'd look the length of my legs, then look over them at what might lay beyond, then scan them yet again. Finally, he would slowly start the climb over making certain that nothing harmful would meet him. Tommy, on the other hand, would scoot up to my legs and dive over headfirst without the faintest hesitation or concern of whether the floor, a boogie man or a thousand-foot drop might await him.
Both boys had their own charm. Johnny never met the first sunbeam that didn't turn his skin into a warm tan. Pushing him through the local Safeway in a grocery cart, I would be greeted by random Hispanic women who would stop us and comment on the beautiful tone of his skin. I would smile and thank them. Tommy has no skin pigment for the sun to warm and brown. But he was born with the most wonderous head of shimmering three-hued hair. It wasn't really red so much as intermingled layers of light orange, brilliant blond and shimmering gold. Both boys were very polite to those around them. To this day, Tommy is a hugger when bidding friends and relatives goodbye.
I will never erase the memory of one of Johnny's countless visits to the Children's Hospital cardiac clinic where they monitored his odds-defying progress. Johnny was barely a week or two into walking with confidence when we arrived. Across the room on a seat near the check-in window was a mother and her few month old infant. The baby was crying. Johnny watched intently. I watched him. He then turned to the bag every parent carries when they venture forth with a baby or toddler. It's always crammed with diapers, a change of clothes, wipes, plastic bags and at least one milk-filled bottle. Johnny took his bottle from the side pouch and with it held in his outstretched hand walked across the room to the crying baby. I didn't know whether to smile, laugh or cry. But I knew then as I feel now writing these words that I could not have been more amazed or proud.
This is a difficult time for me...and for Tommy. March 22, 1990 was the day Johnny was born. March 12, 2010 was the day he died. Maybe that is why I'm writing this now.
From the time of his diagnosis until the age of four, Johnny's life was a mix of typical infant and toddler experiences and visits to doctors and what seemed like a second home, Children's Hospital for invasive catheter checks and procedures dealing with the vessels coming from his heart and even more invasive heart surgeries I've already mentioned.
I remember a business trip to Georgia. I was standing in the headquarters office of Glock USA talking with Paul Jannuzzo, a good friend and one of the finest men I've had the honor of knowing. In came a bear of a man, limping a bit. He was the sales manager. I can't remember if he was a former policeman or military. He announced that was recuperating from a catheter procedure where they threaded a tube from his groin to his heart to have a looksee. He groaned that it was the most painful experience he'd ever had. I offered my sympathy but could not help but mention that my son, Johnny, already had four. I didn't mention that not once did he complain.
After every procedure it was my role to spend the night in the hospital with Johnny. I got to know the nurses and became pretty proficient at changing his diapers and bed linen. To this day, I marvel at the roll, tuck, unroll system they use in replacing soiled with fresh blankets and sheets without removing the patient from the bed. More than once a nurse would astound me with the complement that I was the only "dad" they knew who would change a dirty diaper. I really loved the personnel there. A number, as fate would have it, proved dear friends many years later as parishioners at St. Jerome in Hyattsville.
While waiting in the playroom for news of one of his procedures, I glanced up at the name tag on the nurse who had just come bearing news from the surgical suite. I saw the name "Mize" and got tongue-tied asking her if she was "Greg Mize's husband." After an embarrassed laugh, she admitted that Greg was her husband.
Greg, then a DC Judge, and I had a long history in Washington politics. I worked for the National Rifle Association. Greg worked as the right hand man to DC Councilman David Clark who was forever trying to pass laws and debate me and others on the evils of firearms. Despite being on opposite ends of the political spectrum, Greg and I developed a mutual respect that grew into a friendship. Turns out he and Marissa had a wonderful family including a teenage boy who played baseball for St. John's, my old high school where Johnny wanted to go and where Tommy is now a Senior. Greg and I played softball against each other when I was at NRA. I have no idea who won. I only remember hitting him with a cross body block that sent Greg somersaulting over my back in an attempt to get to first base and that Councilman Clark was playing in a pair of Bermuda shorts, black dress shoes and black socks...a total dweeb!
I remember watching with humor and awe how at age three or four Johnny responded hours after returning from either the Glenn or Fontan procedures. Can't remember which.
For weeks before an operation I was a mental, emotional and literally physical wreck. Suffice to say I literally lost a great deal of blood. No exaggeration. I mean physically, not figuratively.
This day as I walked up to Johnny's bed, he was lying on his back. His chest was bandaged but his legs were crossed as if he were watching the tide from a lounge chair at the ocean. All he needed was a huge cigar and I would have thought he was pretending to be his grandfather or Groucho Marx.
I think he actually looked forward to each stay at Children's. Not so much because he was into surgeries but because they had a terrific playroom and all he wanted was for me to let him stand on the wheeled base of the pole holding his IV bag and with him holding the pole with both hands push him down the corridor to one of the toy cars he would get in and drive around the room. Yours truly was the plastic auto's engine.
Traditional wisdom says having a child with a life-threatening malady drives many parents apart. I truly believe that if the match was built on solid personalities with two individuals committed in faith, trust, strength of character and love that it builds a stronger bond. Unfortunately I began to focus on the fact that things between us were not so sound or solid as I thought...on almost every level.
Early signs came during doctor visits when Johnny's mother would say and do things that simply clashed with reality.
I had the habit of personally thanking any doctor, nurse or med tech for whatever service they gave Johnny. I wanted Johnny to grow to appreciate and acknowledge kindness given by others by having him say "thank you" after each visit. One day after a nurse had a particularly difficult time finding a vein to take a blood sample, his mother scolded me for "forcing" him to thank the folks for their service. She said she didn't believe you should "thank" someone who "painfully tortured" your child. I had a very difficult time trying to figure out what was torturous about a sincere effort to keep Johnny alive.
Later when Johnny was showing signs of respiratory difficulties, I listened intently as the doctor asked about allergies. Not once did his mother acknowledge that a dog, two cats, and a cage full of birds resided with him. I collared the doctor outside the office and provided that information. Despite the doctor's recommendation that Johnny undergo the standard testing to identify allergens, she absolutely refused to allow him to undergo such a "painful procedure."
At his pediatrician's office, she said Johnny suffered from exercise-induced asthma. She asked when did that phenomenon morph into "real asthma?" I must haved winced at the question because the doctor, a very talented Vietnamese woman, glanced at me and said "it is real asthma." It turned out that the real motivation for the visit was to get the doctor to officially declare that Johnny needed to nap during physical education period at school, not exercise. The doctor said her daughter has asthma and that exercise is the best approach when dealing with the problem. His mother didn't like the response and changed pediatricians.
A few years later when she was lobbying for Johnny to get a pacemaker, his then cardiologist, Dr. Sharon Karr, stated on the record that the implant was a precaution and not dictated by a decline in Johnny's health under my care. His mother's reaction was to change cardiologists.
One day Johnny said he wanted to play basketball at St. Jerome School. His mother said they would have to check with his heart doc, the new cardiologist, Dr. Benheim who was part of the same practice. Dr. Benheim told her that basketball would be a great activity for him. As we left the office, Johnny was smiling...it was a smile of happiness. Outside she told him "I don't care what the doctor said. You are not playing basketball!"
Doctors who disagreed with her were not the only medical personnel with whom his mother clashed.
On one occasion, she told me I had to go talk to the office administrator at Dr. Karr and Dr. Benheim's office. She said she was treated abusively during the last visit. I was puzzled because the office administrator/manager always appeared very professional but also very helpful and cordial.
I drove to Virginia to see what the problem might be.
Once there, I explained the nature of my visit. The office manager was a no-nonsense individual. She got right to the point. Johnny's mother arrived about a half hour late for his appointment. She got irate when asked for the referral from his pediatrician. She did not have the necessary referral with her. The manager offered to call the pediatrician's office to have one faxed over. Turns out, if I was to believe the office manager (and I did), Johnny's mother continued to get very heated with her language and demands and acted as if it was the office manager's fault that she didn't have the paperwork. It was not the first time his mother was late for an appointment or lacked a referral.
During one of Johnny's hospital stays, his mother told me to tell the night nurse not to wake him to take his blood pressure etc. I decided to check with the nursing staff before making such a request. I was told that it would be impossible to honor such a request because of the demand of so many patients. On yet another stay, a male nurse, who like most of the nurses there had been administering to Johnny for years, pulled me aside and informed me that Johnny's mother was verbally abusive to pretty much all of the nurses on the floor but mostly to those of minority ethnic origins. I really was shocked.
Then I noticed that most of the nurses treated us differently. They all adored Johnny. The black nurses laughed and joked with me as if we grew up together. With her, they were a bit standoffish...as if she were an authority figure. I normally just wrote it off as a response to her acting more like a wannabe doctor than a mom. She had a habit of picking up medical jargon and using it in her everyday conversation. If you paid close attention, as did the doctors and nurses, you quickly realized that although the words sounded right, they were almost always used incorrectly...very much like asking if exercise or activity induced asthma would become "real" asthma.
(To be continued...yet again)
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