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

Eight Days With Megan

megstressmeg

Time passes and life goes on but we all have certain events in our timelines that choose to linger, sometimes even haunt us, reminding us of sad days embedded with grief and memorialized annually through dates on our calendars. Time passes, with age comes wisdom and I’m told time heals all wounds. Bullshit, time flat out refuses to heal the deep wounds of the heart and soul. Those wounds never fully heal and the scars open up because of certain triggers, such as anniversaries. Such is the case for Maureen and I today, the anniversary of the day cruely etched deep into souls of our memories and our hearts. October 23rd was the day we had to let our 19 month old daughter go.

Every year this dreaded day slowly creeps up on our hearts to pierce them with painful memories. A few months back while sorting through some photographs I came across a piece of paper I had written a poem on. It turns out this paper was something I wrote many years ago to counter the pain of our loss by replacing it with the memory of Megan being home, giggling and smiling, walking despite doctors prognosis’s, and squeeling with happiness for the eight days she was home with us after a successful heart transplant. Those eight days mean everything to us, and its that memory we try our hardest to hold onto. I had planned to post it today but realized I’m not yet ready to reveal that particular poem, that part of myself, but I still want to put some focus on the need for organ donation awareness. So I chose to share the story of eight days.

Eight Days With Megan

From birth our tiny little baby girl had to fight the odds. By three weeks we were already in a hospital with her and before she could even crawl we had been with Megan through blood tests, prods and pokes, and even a spinal tap. I still remember how tightly she squeezed my finger as she cried from pain and confusion, leaving Maureen and I without the luxury of breaking down. Megan needed us to be strong for her. But in the end it was Megan who had shown us strength, taught us about life.

Megan had Cardiomyopathy, a viral disease which causes myocarditis, an enlargement of the heart. As she grew so did her troubles until one ugly Sunday morning her heart seized and she stopped breathing. We heard Megan’s gasps on our baby monitor and ran to her. Because I had learned mouth to mouth as a young boy I covered her mouth and nose with my mouth and began breathing into her lungs while Maureen called 911. The EMT’s arrived in minutes and whisked her away to the ER. We got our selves together and went to meet her but when we got there she wasn’t there yet. We had no idea at the time but the EMT’s had stopped the ambulance to use a pediatric defibrillator on Meg. Meg was admitted to the ICU and later that evening we were told she would need a heart transplant to survive. A jack hammer to our hearts. Subsequently Megan seized again in the hospital causing a mild stroke which left her weakened, unable to hold her head up for any significant length of time. Maureen dedicated every second of her life to Megan’s physical rehabilitation as I meandered mindlessly through my job relieving Maureen when I got home by entertaining our baby girl. Together we traveled to Philadelphia, only to have doctors there say she would never be able to walk and most likely unable to talk, so Megan was removed from the transplant list.

This only increased Maureen’s determination and the hard work paid off when Columbia Presbyterian Children’s Hospital placed Megan back on the transplant list. Organ donation awareness was tragically negligent at the time and Megan’s chances were even further hampered because of the size of the heart needed. As a parent it is the most difficult position to ever find yourself in, knowing the only hope for your child is dependant on another parent losing theirs, and willing under horrendous circumstances to make the choice to donate their child’s organ. So we understood that we got fortunate because of another parents nightmare when the call came to bring Megan into the hospital for a heart transplant. The true definition of bittersweet.

After an agonizing night with our family members the doctors told us Megan’s transplant was successful. We were able to breath again but not for long as it was another four weeks of rehabilitation in the hospital with our tiny baby daughter having blood drawn a few times a day, temperature and blood pressure taken almost hourly, and the seemingly endless wait to make sure the anti-rejection medicine kept her little heart beating. Maureen lived in the room with Megan sleeping on a chair everyday and I took an SRO room a few blocks from the hospital, worked in the day and stayed with Maureen and Megan until eleven PM. We literally had residence there, our neighbors were children and their families in the cardiac ward with us, and the outstanding nursing staff who all treated us as family. They laughed with us, they cried with us, some even brought in homemade meals for us. The day we were told it was time for us to bring Megan home was the first time we cried from joy in over a month of tears brought on by the pains of Megan’s ordeal.

Going home was a huge relief shared by all of our friends and neighbors who had set up a welcome home celebration for Meg. Banners and balloons, Meg took it all in as if she knew it was for her. Unfortunately because there was so many people and potential germs we couldn’t allow her to stay long, but I truly got the sense she felt important, maybe for the first time. We took her inside and she immediately wanted to get in her walker and run around the kitchen. She was stronger than ever before and she was motoring around in her walker like a NASCAR driver, squealing and laughing. She would watch Sesame Street and applaud, her favorite character was Grover. Mine was too. Every night when I came home from work Megan and I played with her toys, an array of stuffed animals Maureen had been using in her physical therapy. I named them and made up stories with Jolly The Clown, Candy Camel, Chocolate Moose, and Lucinda Lamb. Life Had never been sweeter and our home was filled with joy and love, with Megan sharing in the joy with just as much vigor as us. Megan’s anti rejection medicine was working, she was beginning to develop normal child activity, many months behind but plenty of time to catch up. Or so it seemed.

After eight days there was a set back, and Meg returned to the hospital. It would be her final visit there, she was placed in ICU because she had contracted a serious infection, and with her immune system compromised she was unable to fight any longer. But the night before she re-entered the hospital, Maureen called out to me ecstatically, Oh my God Keith look, she’s walking. It wasn’t a long walk but it was a victorious walk, and she was so proud of herself. She knew she had accomplished something special. Those were the eight best days of Megan’s short life. We spend time with our children and invest in them by teaching, showing our kids right from wrong, weak from strong, basically how to cope in an uncertain and unpredictable world. But it was Megan that taught us about life. In return for all the sacrifices and heartaches we endured, we were rewarded with eight days.

Eight days. Eight days we remember so well and try so hard to focus on to replace the agonies we suffered getting to those days. Eight days when our little girl showed the world how much her strength and perseverance paid off. Eight days of bliss with Megan. Eight days we would never have had if not for the extremely courageous decision one mother made when her son had been killed in an accident. I tell you this today not because I am seeking sympathy, but because I am looking for help in getting the word out that we need more organ donors. In the years after our ordeal we have continued to try and get the word out, because in the end Megan’s surgery was successful, if only for those eight days. Maureen has gone on to become an altruistic kidney donor and was involved in a chain of eight people who received transplants because of her link. Eight days, eight people in the chain. Is that number just a coincidence? It would take a far more clever person than myself to know for sure if its coincidence or if there are more profound forces at work. We can debate about fate, destiny, divinity, Gods of all shapes and sizes, Pros vrs. Cons, collective consciousness, or random theory. Maybe its just the universe conspiring but for me the answer is a bit more simple. Its all about love. Make your love eternal by donating your organs.

Today monumental strides have been made, and perhaps if it had happened today this would be a far different story. Either way it’s a story of love, hope, dedication, and courage. Donating your organs is easy, get on your computer and got to http://donatelife.net/organ-donation/…That’s Donate Life. Or go to UNOS and educate yourself. Tell your friends, your family, anyone who will listen, help get the word out. Make your own personal wishes clear to your family so no one else is left with the tough decision of what you would have wanted.

One time someone who was unintentionally insensitive asked me “Was it worth it all, for just eight days?” The short answer is yes, it was worth seeing my baby girl stand, to make normal baby noises, to just be happy. Yes at times it’s difficult, every year we wonder what Megan would be doing as a ten year old, an eighteen year old, a twenty one year old. Each year we reflect and wonder how her and Kellie would have been as sisters. And yes every year as October begins rolling around we become sadly contemplative, but the memory of those eight days helps ease the anxiety. When you have a child with a catastrophic illness or a disability you hang on and treasure every tiny thread of hope available because sometimes that’s all you have. We treasure every second we had with Megan.

I used a number of clichés here on time and love, but I want to leave you with one last cliché. Life is short. Aside from sharing this story I would like to also share my perspective on time, life, and love. Don’t waste time, live your best life, spend quality time with your children, (By far the best investment you could make in their future), and spread love. The more love you give away the more you end up getting back. Life is indeed short, and it can be lost in a heartbeat.

Give love, take love
Share love, make love
Peace

I would like to thank the TRIO (Transplant Recipient International Organization) and the great friends we encountered there, the staff at Columbia Presbeterian Children’s Hospital for all the caring love and support they gave not only to Megan, but to Maureen and myself as well, most especially the nursing staff who had to help us to understand much of the gibberish doctors threw at us, and the good folks at UNOS and Donate Life who continue to work hard at brining awareness to the need of organ transplants. If you aren’t a donor, please become one. Thank You