Wind Beneath Our Wings

heart and flowers

 

Keith and I had our first child together, our daughter Megan, on February 26, 1990.  After three weeks, we discovered she was in congestive heart failure, she had an enlargement of her heart called Cardiomyopathy and she was put on many different medications, to help her heart, beat efficiently.  When she was only 7 months old, however, she suffered a massive heart attack and a stroke, and that was when we were told that she needed a Heart Transplant. Those words echoed to our very core, we knew how difficult it was to get a donor heart for an adult, but a child!!!  We were terrified, to say the least, but we were on a mission.

They transferred her to St Christopher’s in Philadelphia, where they put her on the Transplant list, right away.  However, 3 weeks later they took her off the list! We were stunned!!! THEY decided that as a result of her stroke, they considered her a vegetable and that she would not walk, talk or see again.  THEY felt that her quality of life would not meet their expectations for her to receive the heart! The next day we left the hospital and undaunted, we got a physical therapist that worked with us to get Megan physically and mentally strong so we could reinstate her on the National Transplant List.

Four months later, we brought her to Columbia Presbyterian in NYC and met Dr. Linda Addonizio, the Pediatric Cardiologist.  She ran a series of tests and determined that she was a perfect candidate for a Heart Transplant! They put her back on the list, and she was immediately listed as the Number One child in the country.  Now the wait…we knew that another Mother and Father would have to lose their child, and be willing to donate their child’s organs for Meg to live. The horror of that was overwhelming!! We waited nearly a year, and when Megan was 18 months old, the call finally came…

On Friday, September 13, 1991, I had gone to a local business called ABB Lummus, in Bloomfield NJ. They had raised money for Megan, (through a fund that was started by our friend Scott Harvin) and asked me to come with Megan and meet everyone.  We stayed about an hour when I got this sudden rush over me to go home. I told Catherine Loreto the woman that organized this event, I must go home – Now! I was not in the house for 5 minutes, when I got this call. It was Dr. Addonizio, she asked me how Meg was doing, and what was I doing, and I told her we just came home because I had an overwhelming feeling that she was going to call me.  She said that my instincts were right – “We have a heart, are you ready.” I started crying – all of a sudden I didn’t want the heart. I was not ready…I now feared the surgery…I wanted to tell her…”We can wait for the next one”. I knew; however, this is the only one, I asked her, how long before we need to be there, she told me no more than 2 hours!

There were no cell phones back then, Keith was on his way home, and he would not be home for an hour…OMG!!!  I was crying for joy and fear at the same time. I made all my calls, to my sister Kathleen, cousin Laurine, and my parents, some friends, and Scott, with each call I was barely able to get the words out…When Keith finally got home, I remember waiting at the door for him.  I was crying, and he came running up not knowing why I was crying. “It is here, the Heart is here!!” We just hugged and cried, saddened for the mother that just lost her child but at the same time strangely elated.

Megan was The 1991 NJ State PBA Poster Child,  so we got a police escort to Columbia Presbyterian.  It was 4:00 pm on a Friday afternoon, normally it probably would have taken two hours to get there, but we got there in half an hour.  When we got to the Peds Cardiac Unit, they took Megan right away to do the final testing to make sure everything was a match. The only thing we were told was that the heart came from a three-year-old boy from Long Island.  Megan was in a great mood, Keith’s brother, Randy and his wife Joyce, joined us at the hospital. The doctors gave us a room so we could spend some time with Megan, before the surgery. This was such a great time, we were having so much fun with her.  The Drs told us that she was physically ready for the surgery, she was strong and in “good” health that they felt she will do great. It was now midnight, we were very happy that the surgery was not on Friday the 13th, even though I am not a superstitious person, we wanted all the luck on her side.

The Drs came in and told us…it is time. All of a sudden, there was this fear that was gripping us, they let us take her down the hall to the Operating Room entrance, when we placed her on the gurney, she started to cry as they wheeled her away, and the doors closed, we could hear her cries as she was being wheeled into the OR.  Keith and I just held onto each other and sobbed. At 2:00 am, they told us that surgery had begun, and for over two hours we were making idle, nervous chit-chat, when Dr. Addonizio and Dr. Michler came out of these large swinging doors, they were practically floating on air. Dr. Addonizio had the biggest smile on her face and told us – she did great!!!  It was a huge success!! They are so happy, the hallway erupted with hugs and laughter. Keith and I couldn’t wait to see her, but they told us it was going to be quite a few hours before they would let us see her. They told us to go home and get some rest, but rest, was not on the agenda, packing and getting ready for a long stay at the hospital was.

We got back to the hospital at around 12, they still were not ready for us, but it would not be for long.  They started to prepare us for what we were going to see, even though I had read a lot of literature on the surgery and had seen many hospital shows I thought that I was fully prepared.  I was not!!!!

As we got close, we could see the ventilator and all kinds of machines. Her bed was actually facing with her head towards the door, so we had to move around the devices, and we did not see her at first until we turned around.  It was stunning!!! There on this huge bed was our beautiful tiny daughter, with all kinds of tubes coming out of her body. She was still heavily sedated, and I was grateful, Keith and I just started sobbing. The first thing we noticed was how pink her skin was.  She never had a pink complexion, it was always grey. Pink what a beautiful color!!!! We knew we did the right thing!

Dr. Addonizio came by to speak with us and told us that Megan was the most successful pediatric heart transplant in Columbia Presbyterian history, she was their 20th transplant.  My thought – 20 what a wonderful number….she proceeded to explain what the next few days were going to entail. Like what will happen when she wakes up, and how they were hoping to take her off all the machines, and out of ICU after 5 days if everything goes well.  At the hospital with us was my parents, my sister, and brothers, my cousin, and Keith’s brother and sister-in-law.

It took Megan a few hours to wake up, but when she did, she was still hooked up to the ventilator, but she gave me a stared down, as if to say, what the hell did you do to me?  Of course, Keith was totally immune to any of this, all she wanted was Daddy. Mommy was mean, look what she did to me. The doctors took her off the ventilator within a few hours of when she woke up…they wanted to make sure that her breathing was not labored, that would put a strain on the heart.  What a huge difference that made. Even though she was on pain medication, Dr. Addonizio said that she was not on heavy doses. She was in Pediatric ICU, so, therefore, we could not be next to her all night long, so Keith and I took turns going back and forth from the waiting room to her bed!! We kept checking on her to make sure this is real!!!

Well, Megan broke all records getting out of ICU, the doctors were so impressed.  She was on the Peds floor, by Monday afternoon. She was remarkable, she was so strong, she could hold herself up for long periods of time, and she knew that she was different.  Her whole right side no longer showed any evidence of the stroke. She was in her walker going up and down the halls on Tuesday morning, greeting all the other patients, there was no stopping her now!!

Every day, she would be getting stronger and stronger.  The doctors took tests every day to make sure there was no rejection or infection.  They really felt that she would be going home within a week. They were astonished, to say the least.  Then it happened, she woke up one morning with a fever. They immediately put her on antibiotics and took more tests, and you could see that she just was not feeling well.  On Saturday, September 28, my birthday, they gave us the news. Megan has a very rare infection, it is an infection that patients that have metal things implanted in them would get, such as a pacemaker. They could not figure out how Meg got this.  We asked them if they possibly left something in her, and they said no.

The next two weeks were very frustrating and exhausting.  I was sleeping on a chair that pulled out to a cot and Keith was down the block at the Ronald McDonald House in Washington Heights.  Neither of us was sleeping at all. Megan had good days and bad days. The doctors put her on heavy antibiotics to get rid of the infection, but it was a long process.  They finally told us on October 8, that she could go home the next day and they would give us the antibiotics and keep her on them for another 10 days. We were so thrilled that she could finally go home.  That we could all finally go home.

When we got there, we were greeted by all our friends and neighbors, they had a huge banner and a gigantic heart balloon for her.  We walked into our home for the first time in nearly a month, and we were elated.

Every day we watched as Megan was building up her strength, doing things that doctors in Philadelphia told us she would never do.  On October 17th, Keith and I were taking pictures of her, and for the first time, she started to walk, she was pushing her little shopping cart, walking around the house, and loving it…!!!!

That night getting her down was a little tough, because all she wanted to do was walk around the house.  She woke up at 2:00 am, and she seemed a little off, she just kind of looked at me in a very odd way. I asked her what was wrong, she started to moan, so I just cradled her and rocked her back to sleep.  

At 8:00 am, I woke up to a frightening sound, she let out a scream (Keith was already at work), I ran to her room and picked her up.  Something was wrong, terribly wrong, but I couldn’t figure out what it was. I called the Dr. and she asked me if it seemed like before, was she having a heart attack.  I said I didn’t think so, but I was scared, she told me to get here in right away. I met Keith at the hospital, and they took Megan away for a short time. They had us bring her to get a cat scan, and while we were waiting, Megan started to deteriorate, very quickly.  She was brought back up to the Peds Unit, the cardiologists were checking her in a separate room from us, all of a sudden we heard, Code Blue and I swear 50 Drs and nurses went running into Meg’s Room. It is now 3:00 pm, Dr. Addondizo, came out and told us that Meg went into Cardiac Arrest with 3 cardiologists right there and they were able to revive her. She told us that she was not sure what was going on with Meg, but she told us that her body is NOT rejecting the heart, because, despite the arrest, her heart was strong.  She went back into Meg’s room, and we did not see anyone for about an hour. When Dr. Addondizo came out again she gave us the shocking news that Meg had two more cardiac arrests and she is now in a coma.

The next 5 days are really a blur, I really don’t know if anyone of our friends or family, who came to the hospital will be able to recall much of it.  Megan was in a coma for the entire time. We were cat napping in the waiting room, night and day, and then on Wednesday, October 23, 1991, the nurse came out to tell us that they had isolated the virus that was ravishing her body and now they were bombarding her with heavy, medications.  There was a sense of relief – a little, she has been through so much…she is absolutely going to come through this…we have plans for her!!!!

All day was very tense and so ironic because it was a beautiful sunny, crisp fall day, but inside was very dark and getting darker.  At around 3:20 pm Dr. Addondizo came out crying, she said there is nothing more we can do…Megan has had 2 more arrests, and her body is shutting down, you need to come in and say goodbye.

Keith and I just hugged each other crying and silently walked into the ICU, immediately we were stunned at her appearance.  She was very bloated from all the fluids that they had pumped into her, to try and save her life, I went to one side, Keith to her other side. They had an oxygen bag over her, and the machines were all beeping.  Keith started whispering to her right away. I was kissing her head! We did not even need to discuss what we each did next, we just knew! I turned to Dr. Addonizo and said please stop, Just Stop! She looked at me and then I looked at Keith, we were hugging and kissing her, Keith had been telling her that it is ok to let go, we did not want her to fight anymore, mommy and daddy will miss her terribly, but we do not want her to suffer anymore!  As he finished the machines stopped, it was 3:30 pm! There was complete silence, except for the quiet sobs, from family, friends and the doctors and nurses. Our beautiful little girl, who fought for her life since the day she was born, got the heart transplant that she so needed was no longer with us! We were devastated!  She was 19 months, 27 days!

Many people have asked me over the years, she didn’t survive, was it worth it, would you do it again, would you have Megan go through with the transplant, knowing that it was not successful!  I tell them, in fact, it was so amazingly successful, our daughter got to live for 6 weeks, holding her head high. Walking when other doctors, told us she was a vegetable, and that she would never walk, talk or see again.  Through the selfless act of a mother who just lost her child, she gave our daughter Megan, the greatest gift of all – LIFE! It was the most successful pediatric heart transplant in the history of Columbia Presbyterian Hospital, at that time…She proved to them that, she absolutely deserved the chance, life was absolutely worth living, if even only for a short while!

That was 27 years ago today, and this is the first time I am grieving without Keith by my side.  On this day we always held each other a little closer!  We always visited her gravesite together, this is the first time that I will do it alone!  I do have some comfort however, I believe that Megan and Keith are together, and I would love to think they are with the little boy that saved her life, that gives me so much solace!

During the entire time Meg was here, the song Wind Beneath My Wings was the anthem for us, it gave us strength and courage to go forward every day, and after she passed, she became the Wind Beneath OUR Wings!

For the Love of Our Human

 

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When we lose the most important person in our lives, we as humans all grieve differently and need time to heal.  So do our animals, this is the story of how our puppy dealt with the loss of his favorite human, Keith!

Our daughter, Kellie, had been sending Keith and I pictures of this dog, a small black Labrador-Beagle mix.  She was telling us how adorable he was, but he was living in a terrible situation. “He needs a home, our home, we have to rescue him!!!” Keith and I owned a business. We were so busy, that the thought of having to care and be responsible for a dog was just too daunting, even though, mind you, we love animals, and have had both, dogs and cats in our lives.  We told Kellie that it was just impossible, a puppy is so much work.  As much as we were saddened for his situation, bringing him into a home where he would be alone all day, just didn’t seem any better!

Kellie had a different idea, however.  She decided to let us see for ourselves.  One evening, she brought him to our home.  I’m sure you know where this is going!!!  After about 30 seconds, Keith was on the floor playing with this adorable 4-month-old puppy and fell in love.  It took a little more convincing on my part “How are we going to manage this?” Keith replied, “As we do with everything else, we will figure it out!!”

On that day, December 14, 2016, George “Bailey” came into our lives. “It’s a Wonderful Life” is one of our family’s favorite movies, and we knew it was right.  Bailey did too!

Bailey and Keith became instant best buds.  Wherever Keith went, Bailey had to be there, too!  Since Keith was a chef, you could always find the two of them in the kitchen.  Bailey was happily awaiting anything that might happen to fall off the cutting board.

The two of them loved taking long walks together, and with Keith being 6’4″ and having very long strides, Bailey, only four months, happily kept up the pace.  When I would come home the three of us would take long strolls during the evenings, it was one of our favorite things to do.  Bailey loved the pack walks; as long as his favorite human came along.  At the end of the night, Bailey always jumped into our bed; snuggling between us.

One year later, Christmas 2017, Keith was not feeling well.  So much so that we took him to the hospital the next day, where we received devastating news.  Keith had a tumor on his liver and needed a liver transplant.

Bailey saw me leave with Keith that morning and when I didn’t come back home with him, he was confused and miserable!  That night, I could not find him, he was hiding from me under Kellie’s bed, and he ended up sleeping in her room all night long!

Keith came home about ten days later, but he was frail.  We did not want Bailey jumping on him and overwhelming either of them.  So while I was bringing Keith into the house, Kellie brought Bailey out through the back door.  Once I got Keith settled, I texted Kellie to bring him in.  It was like something out of the videos you see on YouTube.  Before Bailey saw him, he knew Keith was home and practically torn Kellie’s arm off, as he tried to run to him.  The reunion was beautiful, Keith stretched out his arms and Bailey flew into them.  All was right with the world.  That night Bailey slept in our bed, snuggling next to his favorite human.

About a week later, I had to bring Keith back to the hospital.  Not only was this devastating to our family, but to Bailey as well.  When I did not bring Keith home that night, Bailey was very very angry, thinking I had something to do with it.  If I walked into the room he was in, he walked out!  Of course, he did not sleep with me that night, he slept with Kellie!!

Bailey was missing his daily long walks with his favorite human.  He got the essential exercise, but it just wasn’t the same for him.  When Kellie and I were not at the hospital or running the business, Bailey got our attention!!  However, as the days became nights, and we spent most of our time at the hospital, he became very destructive.  Kellie would go back and forth to take care of him and give him hugs, but he bore holes in the walls and ripped up the carpet.  We knew that he was so upset, so we found it difficult to be angry with him.

Keith spent another 12 days in the hospital only to have them tell us that there was nothing more anyone could do for him.  When he came home for the final time, we had to have Hospice set up in our living room so we could make him as comfortable as possible!

Over the next nine days, I slept in the living room with Keith, because I was afraid I would not hear him when he needed me.  Bailey spent every night in our bed, but during the day, he would nervously go between the couch, to the chair, to the floor, or lay under Keith’s bed as if he was protecting him!

On February 8th, just six weeks and two days, after the initial visit to the hospital, Keith was in and out of consciousness.  At one point, Bailey jumped up on the bed and landed on Keith’s stomach.  Bailey was only 18 months old, and of course, he didn’t realize that he was causing some pain.  He didn’t understand why we quickly shooed him away, and he was so upset that he hid under our bed.  Kellie and I spent the whole day just being by Keith side.  We were playing his favorite music and telling him how much we loved him.

Very late in the afternoon, Bailey came to Keith one more time.  He gently got on the bed, kissed Keith on the face and then he left his bedside.  That night, just before midnight, Keith had passed away.  We had to call the nurse from hospice to come and officially pronounce him.  While we were waiting, Bailey laid under the hospital bed, and the three of us sat there in silence.  He never came from under the bed until the nurse arrived.

The nurse was a kind, 6’6″ gentleman from Jamaica named Godfrey, with a baritone voice, and fedora.  Bailey would typically greet him with his tail wagging, and try giving kisses.  Usually, he would jump up because he was so happy to see him.  Not this time!!  Bailey proceeded to sit in front of Keith at his bed as if guarding him.  As Godfrey gently took care of Keith, Bailey did not move.  Bailey watched intently.  I believe that if Godfrey moved a hair wrong out of Keith’s head, he might have lost a leg.

Once Godfrey left, we then had to wait for the funeral home attendants.  It was so heartbreaking for Kellie and I, but it became so profound as we watched Bailey sit next to Keith when the two gentlemen, dressed in suits, arrived at two in the morning.  As the gentlemen worked, Bailey followed them intently.  He was visibly upset as these guys placed Keith on a gurney.  Bailey was running back and forth; from both sides of the bed to the couch to the chair.  He was whining, crying and trying to catch his breath as they were making there way to the front door!  What were they doing to his favorite human?  Where were they taking him?

As the funeral attendants took Keith away, Bailey followed us down the stairs and watched as the gentlemen placed Keith in the back of the hearse.  Kellie, Bailey and I watched as the vehicle drove away, and then we went upstairs.  Kellie and I went to our bedrooms, Bailey slept in the living room under Keith’s hospital bed, and he did not leave it all night long.

The next morning I had to go to NYC, and Kellie stayed home.  Hospice needed to pick up all of their equipment.  What neither Kellie nor I realized was how devastating this would be for Bailey.  For over ten days, the hospital bed and oxygen machine were part of our lives and an extension of Keith.  When Hospice came, Bailey went crazy and started jumping up at the gentleman taking the equipment.  He was crying and whining as each piece was taken outside to the truck.  Kellie called me to tell me that he was crying so hard that she thought he was choking.  She was so upset as he would run to the window, watching them load the truck, crying.  After they left, Bailey did not know what to do with himself.  He ran from room to room whimpering; he was devastated!!

Over the last few months, it was a real struggle not only for Kellie and me but also for Bailey.  In the beginning, he was so stressed out and super hyper.  Going for a simple walk was agony.  We were so frustrated that we could not control him.  It was beginning to look impossible for us to keep him.

While dealing with our own grief, and because we loved Keith so much, we had to realize how important it was to remember our little non-human.  Bailey is grieving with us.  Each day, we all get up and put one foot or paw, in front of the other, and try to adjust to our new norm.

The three of us are slowly navigating our way out of this deep dark cloud together!  Bailey goes back and forth to Kellie’s room and mine to sleep every night!  We may not be his favorite humans, yet, but as we all get out of bed every day, we are all learning to live life without our favorite human, Keith!

 

 

No Big Deal

 

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It was a beautiful morning, much like today, seven years ago, on Wednesday, June 22, 2011, Keith and Kellie were by my side, as I was putting on my hospital gown and getting into a hospital bed.  We were all making nervous small-talk, and Keith was making his usual sarcastic puns and quips. As the anesthesiologist comes into the room, all I said to him was I better wake up…

When Keith and I opened The Petite Cafe in 2001, we were new to the town of Nutley, NJ.  As the years went by, we got to know so many wonderful people that eventually became friends. One such family was the Paserchia’s.  I met one of the daughters first, Leanne, then her sister Kim and then eventually their parents, Dennis and Denise, and brother Christopher.

Around 2006, Leanne came with her family into our cafe for Sunday brunch, and her mother, Denise was visibly shaken.  When I asked what was going on, they told me that Dennis needed a kidney transplant, that he was a difficult match, and had no prospects for anyone willing to be a living donor.  I said to them “I’ll get tested, what do I have to do?” They all looked a little shocked, but they told me that I needed to get a blood test. I told them “great I’ll do it!” During that little conversation, brunch is booming, so I went back to work, and I casually walked up to Keith, who was in front of a sizzling stove, with pancakes on one side and eggs on the other, and said “Um, Babe, I am donating my kidney, to that guy over there!”  Without skipping a beat, he said “oookkkaaayyy,” while flipping the pancakes!!!

A few days later, I went to St Barnabus, in Livingston with Keith, and we met with two great people Marie Morgievich and Dr. Shamkant Mulgaonkar.  They loved Dennis; his wife donated her kidney six years earlier, and he rejected it. They were very anxious to get him a new Kidney. When we met with Dr. Mulgaonkar, he took out his pad and pen and proceeded to show us how this was going down.  He was so amusing in his explanation but, I was not sure if he was trying to scare us or just wanted us to be very well informed.   But after he proceeded to explain, EXACTLY how they were going to cut into me and take my kidney, he said, so are you still interested??  I said of course! You don’t scare me; this is EXACTLY what I want to do.  Keith told the Dr., “she made up her mind Doc, there is no turning back, now” Dr. Mulgaonkar, said great, let’s get you tested!!

Unfortunately, I was not a match.  Now, understand that being a match for someone is very difficult, even within a family.  But if you don’t even get tested, you will never know. There was another option, it was called a “chain donation.”  So this is how it works, Dennis needs a kidney, he needs someone to donate for him, whether it is a family member, friend or stranger.  Once they have that, next is finding another person (let’s call her Laurine) in need of a kidney whose family member wants to donate, but does not match her either (let’s call her Kathleen)  I match Laurine, and Kathleen matches Dennis. So, my kidney goes to Laurine and Kathleen’s goes to Dennis. Thus the chain, I hope that makes sense!  The big problem is still getting that person who will match Dennis!!!  When family members, friends or even strangers, do not step up, it makes it difficult for the person in need, to even get the opportunity at life!!

For the first few years, nothing happened, there was no match out there for Dennis! Meanwhile, poor Dennis was on Dialysis this entire time, up to 4 times a week. Then one day I get a call from Marie, and she tells me that we have a match.  I had to go to the hospital for tests, which includes a cat scan, pap smear, and mammogram. Everything came back perfect! I am ready to go!!

But then, the call that brought everything to a screeching halt, just a few days before the operation!  One of the people in the chain – I believe it was a chain of 8, decided to back out, because his wife’s friend wanted to donate to her, and she was a match!  He was delighted he did not have to do it, backed out and the whole chain fell apart! I was so angry at the guy – HOW DO YOU DO THAT???, all these people are counting on you?? So now we wait again!!!

We waited nearly a year, and around June 10, 2011, the phone rang.  It was Marie, who said, ok we have a chain again, we think that this is solid!! Everyone has to come back again and get all the tests done, again, to make sure that nothing had changed.  If everything is good, surgery is June 22!

On Wednesday, June 15, 2011, I went to St Barnabus, for my tests, I had the mammogram, pap smear and then the cat scan.  Now the cat scan is where you have the iodine injected for contrast. Once the Dr. started and injected the iodine, I laid down on the table.  It was so weird, but I let out a very fast, short sneeze!  I had no idea where it came from because it actually startled me. After a few moments, my eyes started to itch, but I could not move yet, the Dr. asked me if my eyes were itchy (my thought was – how does she know that) and I said yes, she said, Ok, I need about 16 more seconds, can you hang on until then, I said sure!

When the test was finished, the Dr was right there to help me up.  As I swung my legs to the floor, now my eyes were very itchy.  She said to me “I think you are having an allergic reaction.”  (Apparently, the sneeze was a warning sign for her) I said, how is that I had this test before, this did not happen. (When your body has an allergic reaction, the first time you are exposed to whatever it is that you are allergic to, your body says “oh we don’t like that,” and it is the NEXT time you have been exposed, that is when the reaction happens, interesting right?!!?!!)

The next thing I know, as she was helping me walk from the imaging room, I started having difficulty breathing.  I happened to bring my daughter Kellie with me that day, without Keith, and she had to watch as my face blew up, and got swollen.  She said, “what is wrong with you, mom?” I was bewildered, I could hear the Dr say to me, “Maureen you are in “anaphylactic shock” a reaction to the iodine, I am giving you Benydryl, it will stop the swelling.”  However, what happened, was that it got a lot worse before it got better. She called for a gurney and laid me on it. I was beginning to panic because I could not breathe, I told the Dr. to get Kellie out of here, and then next thing I knew I took in a breath and could not exhale, I hear in the background Code Blue, Code Blue!!

Next thing, 14-15 doctors, and nurses are surrounding the bed looking at me, and one said, I am going to put a breathing tube down your throat to help you breathe.  I shook my head NO, and I knew if they did that I would have to stay in the hospital, besides I was starting to feel a little better.

By the time Keith got to the hospital, I was down in the emergency room, but feeling better and still swollen.  Keith told me that he “was so freaked” out that he was not here for me, and he was so happy to see my face – even though it didn’t even look like me!  Before we left, I asked the Drs., am I ok to have the surgery next week?!?! They said yes you are, my reaction was “GOOD”! After a few of hours, I was okay to leave and I even drove home.

That Sunday, June 19th, was Father’s Day.  Our store was open, but a Street Fair was going on, and Keith and I decided to take a walk. As the surgery was looking like it was really happening and I was feeling excited and anxious about it.  I knew it was the right thing to do, especially since Organ Donation has been in my life, ALL my life – but again that is another story, for another time! As we were enjoying the day, I said to Keith, “I know that Wednesday was scary, but I need you to promise me one thing, that if the surgery goes south, you won’t be angry with me.”  We stopped walking, and he said to me “How can I ever be mad at you for doing something so beautiful,” I gave him a big hug and said to him, “Ok bring on Wednesday!”

Which brings us back to the beginning of my story…

I kissed Keith and Kellie, then I was wheeled to the OR, they helped me on the bed, hooked me up to IVs, and the surgeon came in and said, “Ok, Maureen, are you ready?”  I said I am, and he said, excellent! That was the last thing I remember until I woke up!!!!

The surgery was done Laparscopic, there were three tiny incisons, they cut the Kidney out, stitched up the vein that connected the kidney and closed me up.  It was about an hour and a half.  Done!!  Now I am not a wimp, but whew, I was definitely in pain, I will not sugar coat it!  Even with the painkillers, it was not easy.  But, I woke up jubilant, the first thing I asked for was “how is Dennis,” they told me he was doing great!  I was beyond thrilled! The surgery was an eight-person chain, my kidney went to a woman in NYC, and Dennis got his kidney from a person, who was from California!  It was such a great day! The lives of eight people changed forever, and I am so proud to have been a part of it!

Dennis did have some issues post surgery, but once he was feeling better, he began living his life without Dialysis!!!  Life was great, and so was his life with his new grandson.

Sadly, after living with this kidney for nearly 7 years, in March, Dennis rejected the kidney, and he is now back on Dialysis!  This does happen with organ donation, he will now be a more difficult match, but if no one steps up to be a living donor, then he will not get another opportunity! We cannot let this happen!  Consider being a Living Donor today!  If I could, I would do it again, I am very passionate about Organ Donation, and to me this was really No Big Deal!

MEGAN’S ROOM

room

 

Its with me everyday
The last moment we held you
When the world became icy and numb
So frigid the wind froze time
So bitter our hearts stood still
Glacial waters filled our beings
Melted only by the salt of our tears
The sun wept and the sky sobbed
The clouds refused to move
The landscape void of color
Our world filled with a brutal silence
Complete abandon
Through the deafening stillness
Mother Earth whispered your name
Beckoning you to sit by the still waters
By the river of silence so idle, so alone
Where I sang you a delicate lullaby
In the rhythm of my breaking heart
Because I had to let go of your hand
Liberate you from the bonds of pain
Your body now free to dance
Your breath belonging to the wind
Your tender voice sang back to me
As if to offer comfort to ease my hurt
Leaving behind only thoughtful memories
Echoing across your sacred room
The playmates we shared cried in gloom
That day we kissed you good bye
Our souls enslaved to despair
Time doesn’t heal, it scars
There’s a secret place in my mind
Where we go to play everyday
In my dreams where you smile
In the room where we used to play
A secret place where I hold your hand
As we search for what love we can find
I meet you there every day and night
In that secret place in my mind……..
Every birthday I count the years
The ones that could have been
But I lost track of how many the tears
The ones that I’ve cried within
Love you Baby Girl, this would have been 27
Life can speed by like a flash in a storm but you can’t hold on to a lightning bolt.
Live whenever you are, love whenever you can, and laugh whenever you want. Don’t hold on to your love, share it now and share it often…….Miss you every day Baby Girl

THE WORST DAY OF MY LIFE

worst day

 

Twenty-six years ago today

A natal occasion

I hugged a star

Basked in her luminescence

Was swathed in her love

The moment you were placed in my arms

I swear baby girl I saw you smile

A grin that warmed the soul

Eyes that lit the world

So full of charms

A brand new life

Of sugar and spice

Best days still to come

 

But destiny can take a cruel turn

Because on a Sunday evening

We returned to the halls of healing

The frigid chill of that winter night

Bore the frost of icy cold news

Words spoken through a surgeons mask

Six words that would change our lives

Six words reverberating through time

“Your daughter needs a heart transplant”

Denial for a second

Then a surrender to our dread

We held each other and wept

When I thought to myself

This is the worst day of my life

But I was wrong

 

Because the next morning I woke up

Reality continued to agonize

It wasn’t a dream at all

And horror will pace through our lives

But Megan wouldn’t let that be

She eased a painful smile my way

Though she had yet to learn to speak

Her arms said hold me Dad

Her eyes talked reassuringly

Everything will be okay

Stop worrying about the worst

Each day can be our first

Together we will fight

To make our world all right

We had to get strong we had to survive

Do whatever it takes to keep her alive

To believe better days yet to come

No longer had I suffered the worst day

I had tomorrow and today

 

 

Until the day we feared would come

Our tears witnessed your final breath

In one unending second you left us

An unending second I still live everyday

Our baby gone

Ripped from our lives

Stripped from our souls

Never again to lay her head on my chest

Or to hear me sing her to sleep

The day her heart stopped

Our world mutilated

Pain cut a profound furrow

So deep never will it be filled

Again I said to myself

This is the worst day of my life

But I was wrong

Because the next day when I woke

You were still gone

The pain hadn’t gone away

You were still no longer here

That was the worst day of my life

Until the next day

It hurt again

Forced to continue without you

Each new day seemed worse

Each new day I knew I’d wake

To the next worst day of my life

 

Time doesn’t heal it numbs

As always this day causes me to reflect

I philosophize on the worst day

What would be the worst possible day ever

As an idealist, a romantic, a philosopher and a poet

I formulate my answer

I have always believed that love could cure anything

Love will always be there when I need it

Love would always be enough to carry my soul

That love will see me through

Love is our strength

So the day I no longer have love in my life

That day I will have nothing left

That day I won’t want to wake up

Then that day will most certainly be

The worst day of my life

 

I hear the phrase “it was the worst day of my life” and consider the reality. A phrase used to describe an embarrassment but also when recalling a life changing event like the passing of a loved one. As horrible as that day may have been it‘s not really the worst day of your life, because the following day we still have to wake up and they’re still gone. That’s the worst day…… Until the next one

Our lives can be defined through points of profound joys and profound losses. The losses can leave gaping holes in our purpose, the hurt and anger build up more each day. Sometimes we counter it with a good cry, or a long walk, or through creative energy, painting, drawing, singing, playing an instrument, or writing. When we can share the energy with true friends they know not to judge, not to offer their own beliefs but accept our offer of love as a gift of friendship and just let us know you’re there, you hear us, and you remember. Call your Mom, your Dad, Sister, Brother, Cousin, Friend and just say hi. Peace

 

An Attitude Of Gratitude

att

 

A person never stands as tall as when they bend over to help a child..

Megan Laurine Jaret

2/26/90-10/23/91

One of the unfortunate truths in life is that sometimes it takes the worst things happening to us to bring out the best of our humanity. However that’s no reason not to shine a light on the profound acts of kindness we as humans share with each other in times of catastrophic stress regardless of what motivated those acts. Every year on the anniversary of our daughter Megan’s death we commemorate her life in some way. Maureen and I both fear this date because it’s an unwanted anniversary, the loss of our baby girl. The immense pain we endured and the profound sense of loss haunts us to this day. So each year we share parts of our journey down into the depths of every parents worst nightmare in an attempt to express the need of organ donations as well as the need for all of us to have compassion without condition. This date also reminds of the best humanity has to offer, the selfless and compassionate acts of family, friends, and even strangers. Our story this year is our attitude of gratitude. It as not just an honor to a brave young child, her fight for life and the tragic fight of a mother and father, but it’s an opportunity to focus not on our loss but of our gain for having had Megan in our lives, and to have had a group of heroes alongside us the entire time. We have had the opportunity to share with so many special people throughout the ordeal. We will shine a bright light of gratitude unto all the people, all the heroes in our story who worked so tirelessly and selflessly to assist us through our struggle to keep our daughter alive and to help us both hang on to a thread of sanity.

We had just relocated from Manhattan to Belleville New Jersey searching out a nice community to raise our family. We were strangers in town with a newborn baby girl who would soon make us unwilling celebrities in the New Jersey town. It started with a visit to a pediatrician and ended in a tragedy, but as is usually the case if you follow the journey and not the destination you reveal the true heart of the story. During that often tumultuous journey there are a number of local heroes we want to recognize and have them be the focus of our anniversary this year. So here’s to our homegrown heroes….

The first star of the journey is the late Doctor Milton Prystowsky, a well known pediatric cardiologist. Dr. Milton sat with Megan for over an hour, the first time he met her, monitoring her heart rhythms because he believed he saw something wrong. He was the first one to listen to what we said about Megan’s discomfort. A very welcome comforting voice of reason and compassion after a slew of doctors who totally discounted our claims as what they perceived as first time parents over-reacting to a normal child’s illness. Most chalked it up to a new mother ranting and a new father whose only real medical knowledge was from what he watched on Marcus Welby or Medical Center. But she was much sicker than just an average childhood illness. With our instincts as parents we knew something wasn’t right and it was Dr. Milton who listened intently to all we said and incorporated our observations in his assessment. Megan suffered from myocarditis (an enlarged heart) and she quickly became a favorite patient of his. He would later spend hours saving her life after she had a stroke and cardiac arrest and even comforted us throughout the pregnancy and subsequent birth of our second beautiful daughter Kelllie. Unfortunately Dr. Milton has passed but he is forever woven deeply into our hearts and we are eternally grateful for all he did.

 

Having found out how ill Megan really was another reality was about to rock our world. Even with decent medical coverage the medicines, the therapy, the time off from work, and the costs of frequent doctor visits spiraled out of control. After a cardiac arrest and stroke we were informed Megan now had cardiomyopathy, a condition which is irreversible. Megan needed a heart transplant and we would need to be ready to at the ring of a phone call to rush to the hospital. A local business person, Scott Harvin who was busy growing his own printing business listened to our story and decided something must be done to help. Along with his childhood friend Chris Otazo Scott began a local fundraising campaign to assist us not only with our bills, which had already placed extra burdens but with emotional support. In the beginning Megan was on seven medications given eight times a day, so many intervals it allowed for little sleep if any as well as frequent trips to hospitals. Scott and Chris started the Megan Jaret Heart Fund which grew exponentially as more members of our town heard of our plight.

Before telling of the story of how the fund grew from a grass roots community effort to Megan becoming the 1991 New Jersey Police Benevolent Associations poster child it’s important to go back to two EMT’s who responded to a Sunday morning 911 call on October 7th. Megan’s condition was compromised further when she had a heart attack that morning which we heard in chilling real time over her baby monitor. A frantic call to 911 brought a rapid response from the Belleville Firemen Mark Rossi and Mike De Andrea, who reacted swiftly and decisively first stabilizing Megan then sweeping her into the ambulance and nearly flying away down the road. Maureen and I jumped in our own car and drove with great purpose to the hospital only to find the ambulance hadn’t yet arrived. Panic stricken and confused we were quickly triaged to a private room where we waited an grueling 45 minutes before finding out Megan had arrived. We would later find out that the firemen had stopped along the way to administer emergency cardiac stimulation. There is not a single doubt in my mind the two of them could think of little else then their own children while saving Megan’s life. Of course the pair of heroes would later humbly tell us they we only doing their job but they gave true meaning to above and beyond with their desperate efforts. No matter how big and strong you may be no one really wants a helpless child to be part of their job. So a special thank you to Mark and Mike.

Leading up to that time our needs both emotionally and financially grew significantly regardless of having the medical coverage Maureen had to leave her job and stay with Megan full time and I picked up extra jobs in restaurants to help make ends meet. The fund that Scott and Chris had started became another focal point of our existence. Belleville Police Lieutenant Jack Mailot had read the story of Megan in the Belleville Times and contacted Scott. He told him that he wants to be apart of the fund – he was a cancer survivor and there was just something special about Meg. He and Tony Weiners, also from the Belleville PD helped to heightened the awareness and assistance and suddenly a huge community that had no idea who we were had started rallying around this young couple with a catastrophically ill infant. Larry Rosenthal, a highly successful businessperson, and his associate Barbara found out about our plight and joined in. Larry became a huge supporter for us when he and Barbara focused on Maureen and I because they realized the caretakers so often go overlooked, especially when the one being cared for is such a beautiful and helpless child. It blew us away, and I admit to many hours of tears of gratefulness in their reminding us that we were human, that we were important, and that everyone cared for all three of us.

The need for Megan’s heart transplant also opened us up to an almost sub culture of people who called themselves “The Transplant Community”. There is a slew of people here who helped us emotionally including Rhonda Roby and Peggy Dreker (who’s own beautiful child had a liver transplant) from TRIOS (Transplant Recipient International Organization) and UNOS (United Network for Organ Sharing). Along with the transplant community was our circle of friends. Our “Bridgebrook” family, Kathy and Bob Gandolfi, Mary Bay Pickett, Michael DiFrabizio, Lisa Grabas, and a host of others who were more than merely neighbors shared in our plight.

Megan got her transplant at Columbia Presbyterian, and her doctors were nothing short of amazing!! Drs Robert Michler, and Dr Linda Addonizio, who cried with us when Meg died never made us feel that our daughter was not their priority! The entire staff of Columbia most especially the extremely caring compassionate and professional nursing staff who always helped interpret what the doctors told us as well as just making us feel as if they were our family.

And most importantly our families, played a major role in helping us to not only get through all the insanity but to help us keep it!!! Maureen’s sister Kathleen and her cousin Laurine, and her best friend Diane, who helped to hold her up and give her the courage to get up and fight another day! Their love and support are still immeasurable today! Her brothers, Michael and Sean, both standing next to us helping to hold us up! Maureen’s Aunt and uncle Mel and Bill, who were by our side when we received the devastating news that Meg needed a transplant, they took our other family member, our little sheltie Kasey Jonze and gave him a nice home while we rearranged our lives. When we had to make a trek to Philadelphia to St.Christopher’s Hospital, my brother Randy and his wife Joyce followed behind us, they virtually never left our side, and helped us settle in our new temporary home while attempting to take our minds off of our peril as best they could. Philadelphia was extremely tough on Maureen who set up home in a chair beside Megan where she watched over her 24/7. After the first month I had to return to work where two of my best friends and co-workers, Wayne Lyons and Vicky Zonana kept me together until I could get back to Philly on the weekends. The two of them along with “Little David” another coworker who since passed away were my rocks and stood alongside me from the beginning of our ordeal. A frienship just as strong today as it was back then despite being miles apart.

Then there is our parents, who must have been going through their own agony watching there children suffering and in so much pain over their beautiful granddaughter enduring more pain in her short life, then they did in their lifetime!

We know that there are people all along the way that we did not mention, but it does not mean that their impact is any less for us! We are eternally grateful to all that had come to the aid of our little family and our beautiful little Megan!

Peace, Love, and Thank You

 

 

 

 

 

 

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