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

One For The Road

meada

Meada Woolfe. I know nearly nothing about her, aside from where she grew up, the little of her life she shared with me, and that she was an extraordinary woman. You see I didn’t meet Meada until she was in her nineties, not even sure exactly how old she was at all. What I did know about this woman was her family abandoned her and missed out on some precious moments they will never be able to get back. It was in the seventies, I was eighteen years old and working in a nursing home as a cook/orderly. Meada was one of the patients there, one who at first I assumed had no family because no one ever came to visit her. That’s not entirely true, she did have a family, just not blood relative family. She has us, the staff. Meada was a favorite for two reason, first of course we all felt horrible she never had a visitor, but secondly it was her sarcastic wit. Meada would tell it like it is, not hold back anything. But she did it in such an endearing and cynical way, like the time she warned me if I let my hair grow too long I’ll start to grow boobs. I heard about that from the nurses for months afterwards, but that was Meada, funny, direct, and the type of woman anyone would be proud to have as a grandmother. In fact, she reminded me a lot of my own grandma, who meant the world to me.
Every time I vacuumed Meada’s room I stopped to chat with her because she was such an incredibly interesting person. She was born in Williamsburg Brooklyn during the migration of Irish, German, and Austrians and her Dad worked in a sugar refinery somewhere near the East River. They were family of moderate means, scrimping and saving to make ends meet and as a kid she dreamed of being an actress on Broadway, in a musical. When she was in her early twenties she got a job at The Bowery Theater and there was convinced by a director to take lead roll in a new form of theater, erotic theater. She sang nude and was cool with that but when her parents found out the family disowned her. She moved into lower Manhattan. After the erotic theater show failed she began working in taverns singing an doing what she referred to as “Whatever it took” to survive. There was a hint of sadness in her eyes when she spoke of those early days which she didn’t do very often.
She often spoke of her days as a “Flapper” during the roaring twenties and that’s when her face lit up. She met the man of her dreams and together they had three children, two daughters and one son, her “baby of the Family.” She showed me pictures of him in a uniform, apparently he was killed during the Korean war at the tender age of nineteen. She never spoke much of her daughters, loved her husband who also died young, and seemed to live happy life up until she was placed in the nursing home. She was a kick to talk with, veering off into nonsense on occasion, but lucid an endearing most of the time. We all cared for Meada Woolfe, she just had a special way about her and I like to believe I was one of if not the favorite of staff members. It was like having my grandmother back for me, I only wish I learned more about the two daughters.
On one very special day she was acting very secretive, asked me to come into her room and closed the door behind me. You really never knew what to expect from Meada so I was ever so slightly apprehensive. My concerns were totally unfounded because in typical Meada Woolfe fashion she came up close to my face to whisper, “JT, there’s something I want worse than anything in the world right now.” I braced myself, “What is it you need Meada my love?” Meada smiled an impish grim, “I want a taste of some good quality scotch, not that Seagram crap, something special. Just one little taste of Glenlivet, that’s what I want more than anything. It was my favorite drink back when I was free.” First the humor of the request hit me but quickly behind that concern, I wondered what she meant. “What do you mean when you were free?” She looked downward, that sadness back in her eyes, “My daughters locked me up in here over ten year’s ago and left me here to rot and die. They couldn’t be bothered caring for me and I have no one left to fight for me. That’s why I’m here in this prison, because I guess I wasn’t a good mother.” I was stunned. My heart sank and her sadness infected me as my eyes welled up with tears. This poor woman, a lovely, funny, interesting woman believes she is locked away because she wasn’t a good enough mother, when the truth is she is locked away because she has two ungrateful daughters. I knew what I had to do, to Hell with rules, if I get caught and fired it will be for a noble cause, to give Meada some love, which she richly deserves. “Of course, Meada, I’ll bring you some Glenlivet, but it has to be our secret forever, okay? I can get in big time trouble for this.” she smiled, shook her head, “thank you, I promise I will take it to my grave.” The sly look on her face told me she obviously already knew I would do it.
The next day I went out to find this Glenlivet scotch. About all I knew of scotch in those days was the crappy Seagrams she talked about. I was surprise to find out how expensive it was but what the hell, its for Meada so I went for it. The next day I snuck the bottle into the nursing home and hid it down the hall from her room. After lunch I took the scotch and headed into Meada’s room. Se knew the second I got there that I had the scotch because she smiled a huge smile. I had taken two glasses with me and poured us each a half glassful. “Here’s looking at ya kid.” I smiled at how clever I thought that was but Meada paid me no mind, merely clinked her glass to mine, “Cheers” and down it went. It was amazingly tasty, and not anywhere near as harsh as the crap I would drink. We did another shot an I told her I would hide the bottle and maybe every once a while give her a taste. “No, not necessary JT, you take the bottle home with you and toast to me every once in a while. I don’t want to make a habbit of this, all I wanted was to have a bit of scotch for the old times, just one more for the road.”
When I left work later that day I kept playing the incident over in my mind. Was I crazy? Did I do something really stupid? I attempted to justify my action saying that it was just a little scotch for a friend, not like I got her drugs or anything. Still, what if she ended up drunk an fell, or had a reaction because of a medication she was on? I decided she was right, I shouldn’t do it again, I’ll take the bottle home like he said and just forget the whole thing. After all, she seemed so very happy, much happier than I ha seen her before, so I gave an old woman one last taste of booze, one more for the road. I made peace with it.
The next day as I pulled up to the nursing home and saw the coroners wagon. Never a good sign, whenever a patient dies the coroner comes in and they sneak the body out the back so as to not scare the other patients. But one of them was likely gone. I walked in the back door an the staff were all in tears, and my best friend and nurses aide Liz looked at me. “Its Meada, she lost her battle with cancer lat night.” Liz was in crying, I was in shock. I walked over to Liz wondering if it Meada died because of the scotch I gave her. I placed my arm over Liz’s shoulder to comfort her, “Meada was a special lady huh Liz?” She couldn’t answer, merely shook her head and turned to hug me. “Liz, I did something yesterday that I probably shouldn’t. I gave Meada some scotch an maybe that’s what did her in.” Liz pulled away from my hug and looked at me incredulously, “You what?… You gave her scotch? No you didn’t, tell me you didn’t.” She looked at my face and my eyes told her that I in fact did. He stared at me for ten seconds before she broke out laughing, I mean really broke out. Nothing else to do, I began to laugh as well, and within seconds the two of us were hysterically laughing and shaking. I pulled my shit together and got serious, “Really Liz, I mean do you think I could have put her over the edge?” Liz stopped laughing and gave me a serious look before responding. “No, Meada had…..YOU GAVE HER SCOTCH??” To which the two of renewed our uncontrollable laughter, me saying yes in between laughs and Liz just saying “A HA HA HA HA” We laughed for over five minutes before we were able to have a serious conversation where she assured me Meada was going to die from the cancer last night anyway, maybe she knew and that’s why she said one more for the road.
That’s when it hit me. I had fulfilled a dying woman’s last request, I had risked losing my job, maybe even getting arrested I’m sure there was some crime there somewhere, to give a lonely woman her last request, One More For The Road. A final request she made of me, perhaps the one person in the world she trusted would do it for her. She has two daughters who will no doubt visit now to see if Meada Woolfe had any money, or hidden accounts or properties they may be entitled to. Funny choice of words, entitled to. Meada was entitle to their love, and at the very least a yearly visit, but instead had to settle for some short visits from the staff at her “prison” But you know what? I was the true beneficiary here, I got to know and love one of the most powerful characters I have ever had the pleasure to meet, and I know in my heart that I was the one who gave Meada Woolfe what she needed before she left this sometimes uncaring world. I hope that when my time comes I have someone to do what I did for me.
We each took a turn going up to the wagon to say good by. When my turn came I walked up to the half ambulance half hearse coroners wagon saying out loud, “Cheers Meada, when I get home tonight I’m gonna have a tall glass of Glenlivet just for you, one for the road, wherever that may take you. Here‘s looking at ya kid“……..PEACE