Five Words

five words

 

 

Heart on high alert

Frustration rising

Panic coursing through blood

Time excruciatingly painful

Every tic a pounding

A rhythm of frenzied dread

Waiting to hear

Waiting to know

Terrified of truth

Nagging doubt

Praying your wrong

Waiting

Nervous

Frightened

Hope almost out of reach

Disarmed

Begging to get an update

Then you hear the five words

The five words that change your life

“We did everything we could”

 

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.

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

Drying My Eyes On The Wind

meg walks

22 years ago today was the worst day of my life. The worst day of the worst week of the worst year. Our beautiful 19 month old daughter lost her courageous battle with heart disease. At only two months old Megan was diagnosed with cardiomyopathy, an enlargement of the heart. Little Megan endured countless medical tests, blood draws, and a series of stays in hospitals. Through all of those tough times she cried in pain as she squeezed our fingers in desperation yet whenever my wife and I were in need she somehow managed the strength to give us a much needed smile. Megan is my hero.
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One lazy Sunday morning we were just getting ready to enjoy a day of relaxation with Megan when a strange noise crackled over the baby monitor. Maureen knew instantly and instinctively that something was wrong so we both ran up to her room only to find her struggling for breath. I pulled her from her crib and began mouth to mouth having received barely adequate emergency medical training as Maureen desperately dialed 911. An ambulance arrived in extremely rapid timing and two experienced EMT’s took her away from us. We closed up the house making sure everything was off, gave our confused sheltie pup food and ran out to meet her at the hospital. When we got there the ambulance had not yet arrived and we were triaged to a private room. In that room our imaginations got the best of u and through our tears we hoped by some miracle it didn’t mean she was gone. Subsequently we learned that Megan had ha a stroke brought on by her enlarged heart and the EMT’s had stopped to use defibrillation paddles on the way in. Megan was in intensive care with her cardiologist. There is something wrong about a seven month old child having a cardiologist.

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Around eleven o’clock, over twelve hours from first arriving the doctors informed us Megan needed a heart transplant. The news hit us hard, an electric shock circling my head then shooting down my spine. It took about two minute for the reality to sink in, and about twenty minute to intellectualize it and understand what we had to contend with next. We spent way too many hours in hospital, Maureen pretty much took up residency in the room with Megan and every free second was spend bedside. The doctors determined they were unprepared for a child heart transplant so Megan was airlifted to Philadelphia to a Children’s hospital. We lived in that hospital for about two months until one day one of the neuro doctors told Maureen that Megan had suffered a seizure and due to her poor chance of “normal” life she was removed from the transplant list. The did not believe she would ever walk or talk. We worked diligently with Megan and finally had her put back on the transplant list at Columbian Presbyterian in New York where she received a heart in September.

We lived in the hospital again for another 30 days me going to work then coming back, Maureen never leaving Megan’s side. The transplant was successful but she still had to endure daily poking an prodding and blood draws. We got to take her home and the feeling of relief was beyond compare. Seven days after being home Megan defiantly walked, and she smiled and was happy. On the eighth day I was at work and Maureen noticed Megan in distress and had to return to the hospital. Megan had contracted a very serious infection and we were back to round the clock care. It was devastating, but the real devastation was yet to come.

Megan was to weak and immuno-compromised to fight off the infection. I am still haunted by the mornings events of that day when I stood by my baby girl. Megan looked up at me with the pain of a million lifetimes in her eyes, still trying so hard to fight but looking exhausted. I knew what I had to do. My baby girl had fought so hard and so courageously not for herself but for us. She had endured countless hours of unpleasant tests and needle probing and she was in intense pain. I placed my hand on her head and looked lovingly into her soul, bent my head to her ear and whispered, “Its okay to let go baby girl. You don’t have to fight anymore.” She understood me as her eyes dampened. With tubes and hoses in her everywhere the only way she could communicate was with her eyes. She looked at me with a profound sadness and her eyes said “I’m sorry Daddy.” But she didn’t have anything to be sorry for, she had taught me more in her short life than I could have taught her in a lifetime. Now it was Maureen and I who were in intense pain. We stood back as a doctor performed his last official task, the beeps slowed to a stop and there was silence. Megan lay there with her eye closed, motionless, yet it was obvious she was relieved. One day I will write a story with this inspiration but for now I can only manage short recaps. Seems every time I recount Megan’s story my keyboard floods with tears and I dry my eyes on the wind.

I’m not looking for a pity party, not looking for condolence, I am merely sharing the story I am sure Megan would want me to. If you want to read the whole story you can visit our Facebook page, Megan Jarets Legacy. All I really hope to accomplish here today is this. Spread the word of organ donation awareness, please become an organ donor if your aren’t already, an please please please, take a few minutes out of your day to tell the people you love exactly how much they mean to you. We never know when an ultimate joy can be snatched from our hearts plunging us into a deep dark crevice. Maureen and I had both on separate occasions considered the possibility of suicide, we were the walking dead for over a month having a hard time finding a reason to go on. The funeral was horrible, a tiny casket with a beautiful child surrounded by her favorite toys and an endless line of well meaning people, most giving us responses that didn’t help a thing. Unfortunately many more have gone there before, many after, and many still to come, but for those still here, before the precious time runs out, share your love. Don’t keep all your love to yourself, spread it around…PEACE