Tears On My Keyboard

tears

Why did I write this? I actually find the mundane moments of life to be among the most interesting to write about but some moments are so profoundly etched into our beings it begins to define us. This is about one of those moments and as hard it is to write and most assuredly will be hard to read the moment also defined an act of giving that effects many lives. Organ transplantation. A word about the title. As I write this story I am at my most naked and vulnerable self, opening and sharing the most profound moment of my life as I sit at my sanctuary, my refuge, my keyboard. This is the story of the last moments of my baby girl Megan’s life and it is guaranteed to have me crying into my keyboard as I relive it in words. So get a box of tissues and be prepared because you about to hear about me and my beautiful daughter, Megan Laurine Jaret.

There should be some cosmic universal law stating that we should never have to be reminded of the absolute worst moments of our lives but unfortunately there isn’t. There are constant triggers that create avalanches of harsh memories with corresponding emotional outpourings thrust upon us. A case in point was the memories stirred up in anyone who has had the disturbing experience of losing a loved one during an episode of Greys Anatomy a few weeks back. The end scenes focused on Derek being at the point of no return from an accident and his wife having to be there and witness his last breath but to also have to be the one to make the decision. A decision born of the purest form of love there is, an act of both total unselfishness and masochistic self-flagellation. The decision to allow someone you love who is in intolerable pain with no hope of any semblance of real life go. On it’s face it was a good television emotional moment but having had to go through a similar experience with my nineteen month old daughter the moment was converted to an entire tissue box outpouring of tears.
I’m not sure if this will be therapeutic for me or send me into a fugue but I do know that by the time I’m through I’ll be typing the story in a keyboard full of tears. So in an attempt to bring organ donation to the forefront I am sharing the story of those last moments. Load up on Kleenex. This is in honor of Megan, my Little Little, my Mighty Meg. A baby girl who gave so much more than she received.

It had been a long road. Megan became sick at only three weeks old. After three doctors visit and one night of Meg in constant pain we made our first trip to the ER where she was seen by a cardiologist, Dr. Milton Prystowski. He notice an irregular heartbeat and before we knew it Meg was having a spinal tap. She was diagnosed with an enlarged heart. She was put on a medicine regimen and sent home. Six months later on an otherwise serene Sunday morning she went into cardiac arrest in her crib. We immediately gave her mouth to mouth, called the ambulance and within minutes she was on her way back to the ER. We jumped in our car and flew up to meet her but she wasn’t there yet. We would find out later that they had to stop and use the defribulation panels on her. After a grueling fourteen hours she was in resting in NICU. The sight of seeing your baby girl in a tiny hospital crib with an IV in the tiny head was devastating, but not as devastating as the news. Her only chance of survival was a heart transplant.
Megan was transferred to a trauma center and eventually to a children’s hospital while we got schooled on organ transplantation. The process of procuring organs for transplant is cold by design to assure the right organ gets the best chance at life in the right body. Blood match and size match where first, geography was considered as organs don’t have a shelf life, and finally the most needy, or who is the closest to death. This prevents people of higher income to snatch away organs and makes it fair and ethical. Now we had to contend with the struggle of conscience knowing someone else’s child must die for Megan to live.

From there things got more difficult. Meg had a seizure in the children’s hospital in Philadelphia. Because the neuro-doctor determined she would not live a productive life due to slowed brain activity they removed her name from the transplant list. Undaunted Maureen got her a physical therapist and the two of them worked hard and got Megan performing tasks and tracking, or following things with her eyes. She was put back on the list after being seen by the transplant team at Columbian Presbyterian in New York. After a few months we got the call, a heart for Megan had become available and the scene was set. Her transplant was successful but it still required a long rehabilitation in the hospital. After over a month of living in the hospital with her we were finally able to take Megan home and she laughed and walked and despite being behind in dexterity for her age she was progressing. This is where the happy part of the story ends and becomes the worst moment of my life.
After eight glorious days watching Megan get stronger by the moment we were hammered with another set-back. Something was wrong and Megan’s health was suddenly deteriorating. We rushed her back to Columbian Presbyterian where she was re-admitted and taken into surgery. While in a waiting room we heard an announcement on the PA system calling for STAT, which we had previously learned was Latin for statim, a call for immediate emergency. Maureen and I looked at each other with deep concern because without knowing for sure what the call was we both knew in our most primal gut feelings it was a desperation call meant for Megan. Our baby girl was about to end up back in the Neo-natal Intensive Care Unit, a place we had become far to familiar with.
The first night there one of the babies next to us passed away and I witness a father comforting his teen age daughter who had fallen apart at the news that her child had lost his struggle. I remembered seeing the intense pain in his face, having to contend with losing his grandson while having to remain strong to comfort his daughter. The pain and love in his conflicted emotions were etched deeply into a troubled face, that wasn’t permitted to show it pain despite the profound depth of torture he was experiencing internally. It was very disconcerting and a tad prophetic as I wondered if I was going to assume a similar role if everything goes to shit. I pushed it out of my mind because we had agreed at the very start with Megan that no matter how slim the thread of hope was we would each grasp it firmly with both hands and hold it tightly to our hearts. Our closest friends and nearest family gathered to be by our sides to offer support. It wouldn’t be long before we would find ourselves desperate for that support.
Megan’s health had become a see saw of emotion, one moment weighing hopeful the next weighing cautious and slim. The moment came that I can only imagine that everyone in the healthcare field must dread. The time for honest and frank discussion about where a patients health had gone and the real and practical possible outcomes. We had become far too familiar with previously foreign terms like catastrophic illness, immunosuppressant, and Cardiomyopathy as the physicians often spoke to us in ‘Doctorese.’ But none of those were what the doctor had in store for us this time. There is not a thing in the universe that could prepare you for this sort of news. We were told directly and honestly that Megan’s outlook did not look promising, that her chance of survival was getting slimmer by the hour and we should begin preparing to make a decision. Once again we had our emotions splattered on the wall. The possibility of losing Megan had become earth shatteringly real.
They monitored her health but there was a heavy sense of the worst that could happen about to be happening. Megan’s cardiologist was choking back tears as she gave us the grim prospective and let us know that there was no longer anything they could do and as hard as it is the best thing for Megan was for us to let her go. We assured her we understood and went in to see Megan. When I approached Megan she was once again attached to an assortment of tubes and cables. We could the whirring of machines and the beeping of her heart monitor. As I walked over to Megan she looked up at me and communicated with her sad and profoundly tired eyes. With those eyes she said, “Daddy, I’m so sorry. It’s just so hard to go on fighting. I’ve been trying so hard to fight for you and Mommy but it’s too hard, I’ve been through so much and I’m not sure I can fight anymore. I’m so sorry Daddy, I love you.” It wasn’t words, but I fully understood anyway. I bent low to her face, kissed and said, “it’s okay to let go baby girl, it’s okay. We love you so much.” It was the hardest thing I ever had to say or do.
I’m not sure if it was to further torture myself for allowing Megan to die or to take my mind off what was really happening but I looked up from Megan and watched as the doctor responsible turned of all the beeping machines allowing a grotesque silence fill the room. I felt sorry for him, I could see in his twisted face that doing this was the worst possible job in the world. Then it occurred to me that I was wrong about that, the worst possible job in the world is being a parent and having to say goodbye to your child for the final time.
As promised, my keyboard is overflowing with tears re-living that moment. I will return in a day or so to complete my final note and then a few more days to garner enough confidence to post it. Peace……..

Epilogue

Today 21 people will die waiting for a transplant.
On average 10 people a day are added to the waiting list
Donating your organs can save or make better 10 lives

Having become part of the transplant community I have come to know some successful transplantation families that became filled love and deep gratitude to the donor. I met incredible donors and donor families, and was fortunate to watch as Maureen became an altruistic donor on a friends behalf which ended up in an eight kidney donation chain effecting multiple families. Organ donation is a cause we both believed in long before it became a reality for us and the time we spent with Megan after her transplant only serves to motivate us further. Please consider becoming an organ donor if you’re not already, and if you are thank you. There are a number of organizations you can look up for more information. UNOS, Donate Life, Gift Of Hope , among others. You can also go to http.orgndonor.gov

Final thought
People often say it must be so hard losing a child. I think painful is a better way to describe it, and like most pains it never fully goes away. You always retain an echo from such profound pain. I think the hard part was having to hear from so many well meaning but misguided attempts at putting it in perspective for me. No one really knows what to say or how to react to you. They awkwardly attempt to help me make sense of it but when your in that much pain making sense is just an unreal concept. It’s my pain and if I refuse to find deeper reasoning or understanding then let me. Don’t assign your concepts of coping to me. When a child dies telling the parent that it was gods will, or that she’s with the angels now does nothing to apply any sensibility to the loss. It isn’t something I will get through, it’s a huge sack of pain I carry everyday. Some days the sack is far heavier than others, but I carry it none the less. Its pain and like any other pain it needs to be treated. It will never be cured but it can be managed to a degree. To my thinking life is a long series of pain and relief, joy and sorrow, happy and sad. Opposites help us to appreciate the depth of each emotion and I just hope that my relief, joy, and happy moments far outweigh my pain, sorrow, and sad ones…….One World, One Peace….Save a life, donate your organs

Mighty Meg Would Be a 25 Year Old Superstar Today

meg

Today is my daughter Megan’s birthday. Had she survived she would be 25 years old. I had a few nicknames for her, Meg, Meggie, The Megstress, Meganator, Daddy’s Little Girl. Of all the names Little little was her favorite made her smile everytime, but Mighty meg was her most descriptive. Mighty Meg suffered a heart condition from birth and fought a valiant fight right from the start. Megan needed a heart transplant but organ donation, especially back in 1990, was extremely hard to come by. The need of her transplant was a soul searching bittersweet ordeal. The thought that someone else will lose their child before Megan could receive a heart was immensely painful both as a parent and as a human being. Meggie eventually did receive a transplant however with a compromised immune system she caught the virus that ended her short life. Mighty Meg spent way too much of her 19 months and 17 days in hospitals but through it all she remained brave. I didn’t even know what brave meant until I was like six, but Mighty Meg had an instinctive braveness about her. When her Mom and I were burning inside from the torture of watching as our child was jabbed with needles in search for a connection to a tiny vein she squeezed our fingers and got through it. Even after it was over and her Mom and I were still reeling in the tears Meg gave us a smile. She wasn’t happy, relieved maybe, but somehow Mighty Meg knew we needed her smile. That’s how Meg was, a mighty force that even in the darkest of hours managed to make us smile. So today I celebrate her birthday but not as a sad occasion, I don’t want to mar the memory of her birth with negative energy, but with fond remembrance as a tribute to what she gave to us in her short time here.
I know this sounds strange but I often wonder if species other than humans experience nostalgia like we do. I really don’t think that’s too far fetched because we now know that elephants experience something similar to empathy or sympathy when one of the herd passes on. Films have documented what can only be described as communal mourning in elephant ritual. Youtube is brimming with video’s of elephants as well as hundreds of other animals acting more human than humans. You can watch various animals interacting in loving ways with other animals or with us. I’ve had dogs and cats myself that were capable of giving and receiving love despite what any expert may say. Love can’t be studied in a textbook or laboratory, it has to be experienced. So I wonder do animals go back to the jungle where they were born, or the tree’s they played in when they were young, and have an unexplainable sense of happiness just being there? Maybe those elephants credited with never forgetting feel emotional tie ins with experiences such as birth. Can Mama elephant remember each of her birth’s fondly? Why not, many of us who have witnessed the birth of their children remember the delivery. We associate emotional events with many things, we can hear a specific song and be transported back to our first love. We do love our nostalgia. I mean look at how we celebrate our own birthdays. Congratulations to us we lived the length of time it takes the earth to revolve around the sun once again so lets have some cake and blow out some candles, that was quite a feat.

Despite the fact that each and everyone of us has a natal anniversary if we live another year we find it reason to celebrate our accomplishment. We see the date of our birthday and it triggers a comforting feeling in us perhaps because that day marked our entry into the world. It’s actually quite quaint when I think about. We develop bonds whether good or ill with events that mean something to us on an emotional level and assign it an anniversary. Today that emotional association for me is simply the date February 26, the day I witnessed the birth of my daughter, Mighty Meg. This would have been her 25th birthday and I find myself as I do every year wondering what she would have been like if she survived. In my logical mind she can never age past 19 months because that’s how long we had to enjoy sharing her life. So today I want to share my recollections of the day of her birth, the day Megan Laurine Jaret entered into our world. As is often the case especially with me, a profoundly sad emotion can be tempered with an upbeat and humorous memory to ease the sorrow of the heart.

It was near the end of February and Megan wasn’t due for another two weeks. It was so cold it felt like March was making a test run of it’s obligatory coming in like a ferocious cold lion. A bitter cold Northeast coast icy wind kind of lion. I was working in midtown Manhattan and Maureen and I lived across the Hudson River in Jersey City. We were a young and hip New York City couple so of course that’s where our child would be born. Being well versed in the Lamaze method of childbirth we were cool, calm, and collected when the moment arrived. Maureen called me from our 34th floor apartment in Jersey City to inform me that her water had broken. She announced it very calmly so I responded in typical suave male fashion. I freaked. After rapid firing all the proper lightning round questions it was agreed that the contractions were sufficiently far apart and time permitted that I was able to come get her. Once home we would have plenty of time to organize for our trip to New York Hospital. I left work and got on the PATH train for Jersey City.

By the time I got home the contractions had become impatient and we were at the point where the doctor told us to go to the hospital right away. So now this hip young urban boy had to head back to the city he just left with his pregnant and dilating wife, but this time in style, no pregnant wife of mine will be taking the PATH train! I called for a taxi then proceeded to get all of our “What To Expect When You’re Expecting” ducks in a row. Hospital bag was already packed waiting in the closet for the big call. A change of clothes, some bathroom items, a photo the instructor called the focal point so Maureen has something to take her mind off the mind blowing pain ahead and a snack or two. In recalling my childbirth class training I asked Maureen if she wanted me to make some Jello knowing she would be hungry after a hard day of labor. My uncanny ability to reason under pressure was noted, “Jello? Are you fucking kidding me? Jello?! I don‘t have time for any fucking Jello!” I thought about explaining that by the time we get through with all this child birthing stuff she might be hungry and could at least drink a semi set up gelatin but then remembered the smoke coming from her eyes when she just recently inquired if I was “fucking kidding“. I opted to remain silent. Maureen headed into the bathroom I assumed to use it one last time before leaving. Our phone rang and it was the front desk informing me our taxi was ready and waiting outside the door so I called into the bathroom, “Babe, taxi’s here, we gotta split.” Thankfully her voice had returned to that sweet sexy rhythmic fashion, “Just a few more minutes, I’m putting on my make up!” Admittedly being male I was unaware of the profound need of proper make up and asked why in the world would she needed to put on make up right now, I mean we are on the way to have a baby not a night out dancing?” Satan voice returned, “I said I’m putting on my make up and I’ll be done in a fucking minute.” I considered returning the volley with a “Oh so you don’t have time for Jello but you have time to put on your make up”, but the amount of stress she had placed in the “I’ll be done in a fucking minute” combined with my love of life alerted me to the total non necessity of such a statement so I opted for a weak, “Okay Babe, but we gotta hurry, Taxi’s waiting and you know how slow our elevator goes.” I took the silence to mean nothing more need be said by either party.

Okay, I’ll admit she looked great but I still puzzled over who would be seeing us. I could also sense nervousness in her which assured me I wasn’t alone in my panicked approach. Once I explained to the driver our situation the wide eyed look on his face assured me that now the power of three was rocking in nervousness. I can only imagine the thoughts rippling through his mind, a delivery during a delivery and all but to his credit he assumed control of his situation, got us both safely in the back of his New Yorker (ironic, right?) and began the trek through the Holland tunnel. The driver was quite animated and calmed us with his talking telling us about his children and the pregnancies therein. We were in the Holland Tunnel when he showed the first sign of concern. “Oh oh, some kind of jam ahead.” My heart sunk below the seatbelt and panic laughed proudly at how easily it got me shaking. “Don’t worry I’ll change lanes, if we get pulled over we’ll probably get an escort.” He crossed the solid lines a number of times not giving a shit about laws and calmly got us through the tunnel and onto the FDR like the pro he was unassisted by the police. When we pulled up to the front of the hospital a nurse was waiting already with a wheelchair because the driver had alerted his dispatch. I jumped out running around to Maureen’s door where the nurse looked at me with deadpan stare, “Can’t you read? All deliveries in the rear.” She pointed to the sign which I stared at vacantly, “Only kidding honey” turning to another nurse said, “This one here is in a daze, this should be fun.” They pushed Maureen down the hallways and I followed like a lost puppy dutifully shouting out breathing time signatures when contractions warranted. She was wheeled into a triage room where they set up the machines for her vitals, “Better call upstairs and get a room ready, we have a woman booming here!” The stand up comedian nurse showed me how to read the tags determining the severity and frequency of contractions and in seconds we were out of triage and into a birthing room.

Any sliver of confidence I had was shattered when I heard another woman in the throes of delivery screaming in pain in the next room. All the way through the room! I ripped open our hospital bag, “Where the fuck is the focal point?” I could hear Maureen breathing “he he he hoo, he he he hoo” and was relieved when I found the photo she chose for her focal point. “Are you fucking kidding? I don’t want a picture I want this to stop.” I had begun to think everything in the book and Lamaze class was total bullshit so we went off script and into our own rhythms. We looked at each other, read the contraction sheets, and when I figured out how to tell her they would be coming soon and they would be ending soon it eased the tension. Maureen just breathed whatever signature she wanted not listening to any command from any non medical professional at this point. The contractions came in waves, some hit the shore much harder than others. One wave in particular was so intense Maureen’s hands gripped my arm like a tourniquet, so tight it cut of circulation to my entire body. It would become a week long temporary tattoo of a blood red tribal symbol of a ten finger vice grip attack. Trooper that I am I whimpered silently. At 4:10 in the afternoon little Megan Laurine entered the world and her beautiful tiny face lit up the birthing room with joy. All the pain and discomfort of the past few hours was forgotten. Well mine was, Maureen was still in pain and discomfort, but she endured it with a smile when she held Megan for the first time.

So that’s the sweet part of the memory, the memory I choose to remember on her natal anniversary, even though like every other year I still wonder what she would have been like. I have no doubt she would have been a fantastic big sister to Kellie and would have her masters in something by now or she would have some impressive title. Maybe she would be the CEO of some big corporation just to piss me off. One thing she would have been at 25 for sure is a deeply loved child who could do or be anything she set her mighty mind to. If you are an organ donor we thank you from the bottoms of our hearts, if you’re not we hope you will consider becoming one. Recycle life.
Happy Birthday Little Little, I love you.

October Go Away

meg

Megan “Little Little” Jaret… Did you ever know that you’re my hero

How beautiful the tree colored lanes
Vividly vibrant and richly chromatic
Crisp morning air filling up incognito
Evenings chill settling in so dramatic

Innocent faces in Halloween masks
Bags full of trick or treat sweetness
That was the October that I once knew
In peaceful autumnal completeness

But on a precarious cold day one October
Hearts were wrenched straight outta our chest
Our baby girl taken away in an ambulance
Left us profoundly confused and depressed

After one year of hospitals doctors and testing
Another October morn came around to betray
That day all of our hopes prayers and dreams
In one harsh second were all washed away

Much too distinctly I remember that moment
So clearly do I envision the sad in your eyes
Our final day of all the tears shared together
Etched in regret cried our final good byes

We knew that your pain was monumental
It made our hearts overflow with dismay
Letting go was so dramatically painful
October won’t you just please go away

Cruelly each year we are choked with a flashback
Of the worst possible days in both of our lives
The harshest month of the year is upon us
With merciless regularity again October arrives

Filled with thirty one days of emotional torture
We attempt to force our misery down underneath
But something draws us to that one vivid morning
We stared speechlessly numb and unable breathe

A parents reflection should only consist
Of holding hands with unsolicited smile
Not the burden of carrying recollection
Of bitter days from the loss of their child

Time now passes by with tremendous effort
Relearning how to live and to manage the grief
But all of our bitter October anniversaries
Are far too short on sparing us any relief

So October please hurry past without haste
It hurts us both all this month every day
If mercy is real please let it be tangible
October won’t you just…….. go away

Love you Mighty Meg
Peace