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!

Grief is Not Grief

 

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Grief in a word is Difficult!  It is Difficult to explain, Difficult to describe, Difficult to go through, and Difficult to watch someone you care about to go through it!  But grief is a very personal thing, some people think that it is love, others believe it is darkness!  Many people believe that they can fix you, and others like to equate their grief with yours.  If they lost a sibling or a parent, they feel they understand your loss of a child because the grief must match yours, it is the same!  Grief is Grief – right?  No, Grief is not Grief!

I am by nature strong woman; I am not the person who would go to counseling of any kind, because I work through it myself!  When our daughter Megan died, our grief was so overwhelming, so consuming.  We had to stop the life-sustaining machines that were keeping her alive, and it was so incredibly heartbreaking!  I will tell her whole story at another time!  The pain was immediate, it was gut-wrenching, it was all consuming, and it was profound!!  What I remember the most about it – was all I did was sob!  When we were making the arrangements, Keith and I were zombies, the funeral director was speaking, but we could hear no words.  He took us to pick out a casket, and there was nothing any more surreal than having to decide how to bury our child!! He said to us “Of course you want the best for your daughter?” Of course, we did, so he proceeded to show us, three models!  We have the economy model, some sort of heavy-duty cardboard that was $1,000, but you don’t want that – bugs get inside!  The next model was a sturdy white wooden casket that was $3,000, less chance of bugs getting inside or the golden model – a golden casket that was $6,000 with this model bugs will never get in!!!  Well, as disgusting as this was, this was his pitch to us – we could not afford the golden model, we really could only afford the $1,000 model, but the thought of our child not being protected horrified us, so we went with the $3,000 model!  (Just a side note – years later we found out that it didn’t matter one from the other – you cannot stop the bugs) I remember saying to Keith, why are we here??

During the wake, people actually came up to us and would say things like, “you know, 99% percent of all marriages break up after the loss of a child”, or “you now have an angel watching out for you” or my favorite, “you are young, you can have more children”, REALLY?!?!?

When everyone went home, and we were all alone, we discovered that we were both grieving so differently.  I was usually the strong one, let’s get things done, kind of person, but when Meg died, I shut down – completely!  Keith, on the other hand, who was usually the more reflective one, and could sit quietly for long periods of time, he was almost manic, in everything he did.  He was so hyper it was virtually dizzying!  Everyone tended to gravitate toward me because I was the mother, and the “public” opinion was that he is strong, he can handle it!  Sadly the dads are in as much pain, in fact, we were both drowning!  No one within our immediate family or friends had lost a child, we were at a place no one could relate to, no one could fathom, no one ever wanted to be!  And worst of all No One could really understand, they tried, but we were alone in this!!

One day I was so depressed, I could barely put one foot in front of me, I was driving my car and came to an intersection where the light was red, with no car in front of me!  As I approached, I had more than a split second to decide that the truck that would be barrelling through the intersection, about the same time I get to it, would help me to end it all in one clean fashion!  However, at that moment, I only thought of Keith, and I knew that it would absolutely devastate him if he had lost me too!  So, I put my brakes on and stopped at the light!  I decided I would never tell him!

Since neither of us knew how to deal with this overwhelming grief, I thought we should go to a Parent Bereavement Support Group.  Keith did not want to go, but I asked him, and he came only for me!  When we got there, the room was full of people mostly women.  We sat around a table, and each of the parents told their heartbreaking stories.  When they got to us, I told our story about Megan’s life.  The woman next to me had also lost a daughter at 33 years old about two years prior.  She proceeded to tell us that she loved her daughter longer and that her grief was worse since I only had my daughter for only 19 months and 27 days!  I couldn’t believe that this is what she was saying.  How can your grief be more significant than mine!  I started to argue with her, and I was getting so mad, that was when Keith got up and said, let’s go – we never went back again!!!!

Even though it was utterly upsetting, it helped us to realize that everyone grieves differently, and so do we, we promised to pay attention to each other and give each other lots of hugs and space!  However, we did not tiptoe around each other either, if one of us were having a particularly rough day, we would be there for the other, we would listen to each other, and more importantly, we would embrace each other as if the world would fall apart if we let go!!!

We kept the world out because everyone was trying to fix us, with cliches like  “God doesn’t give us more than we can handle,” “God gives us lessons in life and sometimes we won’t know the why only God knows the why”!  These statements only made us angry; they were not comforting.  My reaction was “Fuck God, what kind of a God would give our beautiful daughter the new heart that she so desperately needed only to take her away six weeks later!!!”  Growing up Irish Catholic, I have struggled with God, since I was 14, but now it is magnified since Meg died!  My cousin Laurine, who is a soul healer (I only found out about this after Keith died, because she knew how I felt about things) is trying to help me – but that is a much bigger story!

I was so grateful to so many friends and family, each one, in their own way trying to comfort Keith and me as much as they could.  One day, my lifelong friend Diane called me, she happened to be pregnant at the time with her first child.  I answered the phone, she said, hi how are you? and for the next 45 minutes, I proceeded to cry in her ear.   No words could come out, I just sobbed!  Diane stayed on the phone, and I do not think she said a word, she just listened to me cry!  When I was done, I told her that I needed to go, and we hung up!  Many years later I told her how grateful I was for just being able to cry and her not telling me it will be alright!  She called me all the time and does not remember this call, but it stayed with me forever!

As we were trying to navigate the heaviness and sorrow that we were feeling, I had gotten pregnant 3 weeks after the funeral, I said Keith had a lot of energy!  I knew immediately that I was pregnant (I knew it with Megan as well) and I was freaked out, to say the least.  I was deep in this hell, and I had a hard time grappling with the loss of Meg, and now I was pregnant?!?!?!  I told my sister first because I knew if I told Keith, he would have been happy, and I didn’t know if I could handle that!  I think I cried on the phone for 20 minutes before I could get it out!  I really did not know if I wanted to keep this child, I was so distraught, how can I love another child like I loved Meg??  How horribly unfair to her memory, if I have this child!!!  How can I even go through this pregnancy with all the angst and sorrow I feel!  And the most important of all, since they could never really explain to us how Megan got sick, I was utterly stricken with fear, that this baby would be ill as well.  When I finally told Keith a few days later, he said to me, well, we have some time to make a decision, let’s just take it one day at a time, we still haven’t even taken the test yet, it is too early!

Two weeks later, we were sitting in the living room as the timer went off, and we both sat there not moving.  About a half an hour later, we got up and walked to the bathroom, and there it was, positive!!!!  We both started to cry, and I said I don’t know if I can do this!  Keith said to me can I tell you what I have observed in the last couple of weeks?  I noticed that you stopped taking the Ativan, (the Dr. gave it to me to help me sleep), I noticed that you cut back on your tea intake (I drink massive amounts of tea), and I also noticed that you are eating better!!!  I sat in silence for almost an hour letting it sink it what he was saying, and finally, I said, ok, so I guess we are having a baby!  It was hard to smile or feel joyous, but I did feel relief!  It was still terrifying, the birth was a long way away, but as we stood together we knew we would get through this – together!

On August 10th after an extremely stressful pregnancy, and going through every possible test at that time, I gave birth to our beautiful, healthy new daughter, Kellie, and even though our hearts were still with our Megan, we learned to live with her always in our hearts.  Kellie grew up always knowing about Megan.  Keith’s son and daughter were 13 and 10 at the time and lived in Florida, but we saw them twice a year.  They got to know Meg and understood that she was sick, but when Meg died, and even though Keith so desperately wanted them by his side – it was impossible to get them up for the funeral! But it deeply impacted their young lives as well, especially Justin!

As the years went by, one day I decided to tell Keith about my encounter with that 18 wheeler, and he looked at me and started to cry!  He told me the only reason “I stopped myself from ending it all, was because of YOU – I knew that I could never do that to YOU!” We both just stared at each other for a really long time, we could not believe that we both had these thoughts and never told each other until now!!  We talked into the night, and we knew how so very lucky we were to have each other!!

On February 8, 2018, exactly 26 years, three months and 16 days, or a total of 9605 days, after we lost our beautiful daughter, my favorite person in the entire world, the pure love of my life died.  But this time, I was grieving alone!  Of course, everyone around me was grieving, my children, my family, and our friends.  But, this has proven to be very lonely, very scary and very debilitating!

The first night after Keith died, I came home and sat on my couch, and I really did not move for nearly 10 hours.  I did not turn the television on, I just sat there, I couldn’t move, and I didn’t want to move.  Kellie was the opposite, just like her dad, she could not sit still.  She actually said she read something that said that people grief opposite their personalities.  I immediately knew that was right, having been through what I thought was my worst nightmare and now grieving again, I could feel some of the same emotions.  Almost every night, I did the same thing. I really did not want to speak with anyone, I didn’t want anyone to come to my house. I just wanted to be alone, and for the first time in 31 years, I was completely alone!  I didn’t want to speak with anyone, and if I did only through texts, and that was only if I felt like answering.  During the day, I had to work to keep the business going, but during the night, I locked the door and shut the world out!  My beautiful sister-in-law, Laura had lost her husband 18 months earlier, and she became a wonderful guide for me to at least help me to know what I might expect.

Sadly 17 days after Keith’s death, a friend of mine in town, lost her husband.  Mona’s husband Jim had cancer, but he was done with Chemo and doing so much better,  Mona, Jim, and their children began to feel safe to start thinking of the future again, but then tragedy suddenly struck, Jim after a complication following emergency surgery, died!!  Stunning!!!  Just as Mona came to Keith’s wake, I went to Jim’s.  It was at the same funeral home, but I knew that I needed to be there for her!!  My heart was breaking for her because I knew exactly where she was at this moment in time!

I was able to keep myself very busy during the day, taking care of matters and work, and just trying to keep things running.  This went on for 6 weeks until I decided to close the business because I did not, and more importantly I could not do it without Keith!  That first couple of months, I was in an automatic mode if you will, I was heartbroken, but I was moving. However, once I stopped, I was overwhelmed with the gut-wrenching pain I was feeling.  The heaviness began to set in, the sadness and pain were profound and insurmountable.  I was completely alone!!!  Of course, I have had so many loving people around me, the kids, my sister, cousin, family, and friends, but I did not want anyone around.  I didn’t want to speak with anyone, it took too much energy!  Everyone wanted to know if I was ok, I was not, but I said I was!

For the first month or so I tried to be active, getting up, taking a shower, looking for a job, cleaning my house, taking care of Bailey!  But as the days and months went by, those activities became quite a struggle!  I was not sleeping, how could I, my lover, my partner, my friend is no longer by my side!!  He laid next to me for the past 31 years, and now he is not there.  My bed is empty, I still lay on my side of the bed as if he is there. I would wash my sheets and find it so bizarre that I am cleaning a pillowcase for a pillow that was never laid on!  Sometimes I cry myself to sleep, and other times I just lay awake afraid to shut the light off because I have become acutely aware of how alone I am!  Even with Kellie in the next room!

Keith and I were truly one!  We loved our togetherness!  We worked, slept, ate and went to the grocery store together!  We would work all day together, get in the car, get home and walk Bailey!  We were not freaks, it just so easy for us to be together.  We were able to give to each other like no one else could!!  Life around us was hard, very hard, but our life together never was!!  That is what makes this so difficult for me to move forward, the hardest part is learning to live without him in my life!  The hollowness, the profound sadness, the future feels so dark and bleak.  It is so paralyzing and difficult to leave the house to even look for a job.

Many times, I would wake up and genuinely wish I didn’t wake up.  I would get up, take a shower and decide that I was going out to look for a job today!!!  But instead, I would take a shower, go sit on the couch, and only get up to take Bailey out!  Poor Bailey, I was walking him 5 to 6 miles a day.

So many times, people would say to us over the years, that they could not imagine losing their child, and it is true that there is nothing like it at all!  But I have lost a child and my husband!  I have lost half of my family!  When Meg died, we had each other to hang on to, we supported each other, we cried to sleep together, we cried during the day together, we held each other up!  We were the support for each other to get up, get dressed, get going!  Now there is nothing!  My sister cannot help me, my cousin cannot help me, my children cannot help me!  I am alone! I do not do alone well, Keith loved his alone time, me – not so much!  Now I am always alone, even when I am not!  I have had a lot of love from family, friends, and acquaintances that tell me that Keith is still with me, but that is not a comfort, it makes me angry!!!  He is not holding me, he is not talking to me, he is not comforting to me!!!  All I feel is the emptiness. I have become a hollow shell of myself, I have lost myself, my soul, my confidence and I really could care less to find it!  I even started thinking that I was unable to take care of Bailey, and began contemplating putting him up for adoption because it was just so hard!

I tried to go to the grocery store, late at night so I did not have to see people.  One of two things would happen, I would see someone and they would look down, because they did not want to speak with me, or they would come up and hug me and say things like, it is time to start cheering up!  Or yes, unbelievably, you are young Keith would never want you to be alone!!!!  REALLY People!?!?!?!

Speaking with Mona, I think has helped us both, because I know exactly where she is going, like no other.  We started texting, but then went to lunch and would just cry, and listen, and because NO ONE else knew how we were feeling, at this very moment.    Mona’s grief is the same, yet different than mine, she has three children, two adults and a 13-year-old daughter at home that needs her mother.  Mona needs to be strong especially for her.  Yes, she will mourn together along with her other children, but she cannot sit on the couch and cry all day, her daughter needs to go to school, and after-school activities and go to sleepovers.  Mona’s oldest daughter was getting married in May.  I said to her OMG!  How are you doing this???  I cannot!  I so admire Mona, she has strength well beyond me!

Sure, many people have lost their spouse or significant other, but their experience is not mine.  And if it happened several years ago, you can remember how you felt, and it brings back the pain, but you are in a different place.  Sadly soo many people I know have lost children since Meg, I would never say to them, I know how you feel because I do not!  I lost my child, I understand that, but I do not know how you feel.  I can reach out and say – I am here if you need a shoulder to cry on!  I can possibly guide you, but I do not know what you are going through!  My friend Patty had lost her son, 10 years ago, we had been out of touch for many years, and because of Facebook, reconnected.  I tried to guide her but did not want to in any way diminish her pain.  We were in two different places, but still shared the pain of losing a child.  My sister-in-law Laura has been my beacon for what I should expect, and for the most part, she had to relive her own heartache, yet Keith was her big brother, she is in her own sadness, and grieving differently than I am, but yet very similar!

Last night, my stepson Justin called, and after about a half an hour of me being emotional about not finding a job, he said to me,  “what has happened to my strong, confident stepmom? The woman who picked herself up every single time and became stronger and more confident!!”  I told him she died, he said no she is hiding!  It was kind of a kick in the ass, bringing me to reality!  I realized that he was right, although, I will not be flexing my biceps anytime soon.  It really made me begin to stop feeling sorry for myself.  I realized that Keith would be so disappointed in how I am acting!  Today, I slowly started to move in at least a forward motion.  Hopefully, as I put one foot in front of the other, and yes with Bailey by my side, the darkness will lighten up, and the hollowness will start to close!  I have been a Phoenix most of my life, the Phoenix will rise again, but I truly hope this is the last time I have to do this!

 

Now I Lay Me Down To Sleep

 

 

Death is the eater of time, and in the end, no one escapes time

Death knows not discrimination
It’s sojourner paid me a visit
Frigid fingers of finality
Toying with my bones
Sending chills to my marrow
Tapping into my syrup of life
Glaring his anxious eyes perniciously
Leering mockingly a disdainful smirk
Baited breath of icy anticipation
Whispering “Surrender and succumb.”

I will not surrender my memories
Attempting to soothe and assure
With words bluntly lacking hope
Is this it?
Is this when it ends?
My mind keeps on fighting
But my body betrays my aim
I turned to my center of strength
Found it full of positive energy
From sparks begun at my sacred hunting grounds
Through the ancient gallery of friendship
Up through years of developing the love
A wave of love and support
My army of love
With weakened élan I addressed him
“Not this time Death!”
Death moved slowly backward
Smirking with deep disdain
With a stinging smile replied
“When you’re time has come I will visit longer…

Life can change in an eye blink. When we are forced to deal with the loss of a loved one we are also forced to imagine life without them around. When it’s, you that may be the one lost you are forced to wonder how you can live without everybody you love or care about. It’s a far different occurrence to confront your past than to have your history facing you, but in the end, The love you make is equal to the love you take. I want to thank my army of love for lifting me through the first stage of this struggle, and for assuring me, you will always be there to help me through.

I’ve been through a multitude of experiences, and lately, it occurs to me….What a Long, Strange Trip It has Been….LOVE YOU ALL!
Live and Love in Peace

Say My Name

 

 

You can say my name
But who am I really
What am I supposed to be
One thing for sure
I’m not a name
That’s not who I am
It’s a title assigned to me
By Mom and Dad
That’s how I came to be me
So who am I really?
A silk sheet thought
One fleeting random moment
A consequence of love
Shared by my parents
An accident of birth
You can say my name
But I’m much more than a title
Much more than a belief
I’m the only thing I could ever be
Something relevant
Just me
The one thing I will always be

Say my name but I won’t answer it’s just a term a verbal cancer of a terminal dancer or a necromancer out on his luck. I’m just a dumbstruck shmuck stuck on a shelf by myself, not some someone else but me. Don’t you see, what else could I be? Although many believed they could change me. Rearrange the stranger in me but its plain to see that only caused a derangement in me. Who’s to blame for all this shame? If it’s you…..Say my name

What’s my name
Monsieur insane
Homme sans cranium
A brainless geranium
What do I possess
All I have is an insignificant title
A given name and too much time
Straddled with faded memories
I try to hold on to my past
Hoping it may last
But it slips through my fingers
Pleading with me to forget
The memories needn’t even ask
I don’t want them
Memories cause sadness
Create melancholy madness
Yet they exist in me
On file
They do nothing but mock
Why shouldn’t they
They’ve done their task
They added to my being
They poisoned my well
Now they whisper my name
If only they could see behind the pain
Hear the screams of my fearful darkness
Feel the fires that burn through my soul
Maybe they would understand why I wish to forget
Know why I rail with constant regret
I wish I could delete them
But I live in their moments

I try to put that shit behind me but my ghosts always seem to find me, keep trying to define me or even realign me and try to destroy my virility. My natural ability doesn’t win me nobility but showing humility as I use it with civility. My good deeds bring me tranquility while I patiently wait the oncoming senility. That’s our brains delete button. One day I’ll even forget my name. I’m an enigma with shitty stigma if you hear me I can dig ya but I’m serious man I’m a mysterious man a delirious man without a clear plan. Life keeps maiming my brain make me believe I’m not sane allowing some demons to cause me shame and I know this sounds lame but if you need someone to blame it can be only one person……..Say My Name

Live and Love in Peace

T’WAS THE NIGHT BEFORE FESTIVUS

 

A Festivus visit
J.T. Hilltop

T’was the night before Festivus
When all through the house
The computer was buffering
I lost the wireless mouse

The gluten free cupcakes were baked with such care
In the hopes that the end of GMO was soon near
The children ate sugar free Nestles they had snuck in their beds
As visions of organic plums danced in their heads

Mom in sexy teddy who was straddling my lap
Had just bound my hands with our Festivus strap
When down in the kids room there arose such a clatter
I uncuffed and got dressed to see what was the matter

Away towards the window I flew like a flash
Dropping my medicine and my now legal stash
It fell on the breast of the new fallen snow
I watched in paranoia as my weed fell below

When what to my bloodshot eyes should appear
A hallucination of Gramps and eight tiny reindeer
Like a leprechaun in red so lively and quick
I knew in a moment my eyes played a trick

A rainbow of eagles his coursers they came
He yelled at all eight and he called them by name
Yo Bashful yo Sleepy yo Doc and yo Sneezey
Hey Dopey and Grumpy and Happy and Sleezy

Hidden in the dresser where Mom hides her thong
Now dash away dash away while I get my bong
Then in a twinkling they climbed onto the roof
A dancing red leprechaun this must be a goof

I took a hit off the bong and was turning around
I opened my hand my pipe dropped to the ground
The dude dressed in faux fur from his head to his foot
He as laughing so hard he never noticed the soot

Bundles of sweet buds there on top of his back
Just like a drug peddler carrying a big fucking sack
His eyes how they twinkled, and his dimples they sank
His cheeks red as roses but his stare was so stoned it was blank

His droll little mouth drawn up like a joke
His beard on his chin was snow white from good coke
The stump of a chamber pipe he clenched in his teeth
Second hand smoke circled my head like a wreath

He had a broad face and a middle aged belly
I aired my first grievance “Yo Santa you’re smelly”
He was also too chubby quite a right fat old elf
And I laughed when I saw him in spite of myself

With a wink of his eye and a twist of his head
He rolled a sweet fatty he bought from a dread
He spoke not a word but played his big role
In the middle of the room placed an aluminum pole

With a feat of strength placed a finger to his nose
An sniffed up more coke through a dollar bill hose
His grievances he aired till his team blew the whistle
And feats of great strength had broken the thistle
But I heard him exclaim the aluminum pole out of sight
Happy Festivus to all, and to all a good night

Enjoy whatever holiday you celebrate but take time to love. If someone says Merry Christmas say thanks, if someone says Happy Hanukkah say thanks, if someone says Happy Kwanzaa say thanks or if they want to honor all and say Happy Holidays say thanks. Be grateful anyone is willing to share good tidings or acknowledge your well being in anyway be grateful because the message is the same…. Live and Love in Peace during this and every other season!!!! Don’t hold onto love, share it….

WHAT IF

 

A metaphoric chance meeting
A cliché reuniting yesterdays love
Two hearts that once beat together
Cashing in on one of fates offers
After thousands of unshared sunsets
So many that came and went unnoticed
Now two proverbial ships clash
I saw my childhood love by chance
We began to share our histories
So many years have passed yet…
Seems not a day of that on her face
What else but fate could have brought this
An opportunity to explore what if
What if we had shared our lives
What if we had never parted ways
What if we had lived our dreams
What if……

What if you stayed and we prayed and made the life we weighed instead of the charade we played which ended in a relationship delayed and decayed? What if you gave me one more chance and we expanded the romance and danced to enchantment, took a stance, one more ride on that promised moonbeam. Plans and schemes for a love supreme. That was our dream. However it seems this memory is just a fantasy because you see… We both have responsibilities to our spouses and our families so we must choose to let this be, nothing more than a wish unredeemed. Anyway who cares, what does it matter, what’s the diff. Then again…..what if
What if we had stayed together, built a happy life together. A house a home a picket fence, some kids some pets, no regrets living the suburbs and all the rest.
But then again what if we stayed the course affected by a dissonant force creating cheating and sexual discourse? Ending in a bitter divorce. Anger hatred bleeding sorrows terminating our tomorrows. Or not

That was then and we are here now
A night to share one magical chance
We shared a bottle of sweet memories
Numbing the pains that lost time brings
The familiar touch upon my hand
Eyes searching to find forbidden pleasure
Our lips begging for one more reverie
One last delusional trip to speculation
Anything is possible in a dream
And a door once left unlocked
May be stepped in from either side
Maybe if we both open up that door
We can be soothed hearing the echoes of love
Bouncing and tumbling or crumbling across time
The train whistles a warning of truth
We had both chosen out own fate
Its far too late

I can’t count the hours spent in distain, torturing myself with no self restraint. Pelting my mistake with drugs and with sorrow. Living in misgivings for giving up on tomorrow. Treated her shitty when life became gritty. I bathed in Self pity, moved to the city nearly drowned in my trance. Always thought I’d get one more chance, one more opportunity to show some romance. We both found a life, husband and wife and to ruin that now would cause nothing but strife. Cause it’s not just us two. There are children involved and our lives have evolved.. I felt broken hearted in waters uncharted because nothing gets finished if it doesn’t get started. But I’ll always wonder…
What if we had never parted

With a passionless kiss we said farewell
Best to leave it as old friends this night
What never really was can never be
Time seems to travel so damn fast
If you don’t pay attention so much goes unlived
I have negotiated too many wrong turns
And sometimes it seems it will never stop
I know that not to be true for I fear one thing
I am nearing it’s end so must listen to reason
Reason tell me a love lost is gone forever
But I choose not to listen to reason
You never lose what you hold in your heart
I have been through too many rotations
Seen things on this earth not possible
Yet somehow negotiated through blind faith
So I shall close my eyes and believe in one thought
Anything is possible
What if

Live and Love in Peace

 

 

YOU CAN GET ANYTHING YOU WANT

 

One of the main attributes of any good hippie is buying into the concept of non conformity. We were down with counterculture, down with breaking traditions, down with zippers, free love, and expensive weed. Tha said, many of us did indeed hold on too, and some of us still do hold onto a Hippie Tradition every November. Alice’s Restaurant is our beloved Hippie tradition and just about anywhere you go in the country you can find a radio station playing Alice’s Restaurant Massacree at 12 Noon on Thanksgiving day. It’s written and sung by Arlo Guthrie based on a true story about a hippie commune celebrating love and life on Thanksgiving Day along the hilarity and banality of events that followed. With a touch of creative license Arlo lays down a folk song with a tale guaranteed to make every true hippie smile. The tune lasts for 18 and a half minutes but for us aging rebels it goes way deeper than just a funny song, it’s a memory of an era. A golden memory. I know this story is very similar to many other potheads of my era but this is how the tradition I still uphold began for me….

As soon as I turned 18 I made good on my threat to move out of my parents house so I wouldn’t have to follow all the ridiculous rules while I was “Under our roof” in the authoritarian gospel according to Dad. So now I’m on my own in a shitty basement apartment in Kings Park with my hair no longer an issue to deal with on an hourly basis. Finally able to indulge in herbal activities without needing to be by an open window while burning incense. But I still had to go to Thanksgiving dinner at home because I didn’t move far enough away, and you just couldn’t say no to Mom. I was at the age where family get togethers were more of a torture once you’re no longer sitting at the kids table. That didn’t mean I had to go there unenhanced.

I invited my closest friends over for a pre T-day dinner soiree to get us all in the right frame mind to combat the inevitable bevy of put downs and why can‘t you‘s. So I told them to come on over around 11,we’ll smoke a few bowls and listen to Alice’s Restaurant on the radio. That’s how I sold it and the response was overwhelming. Eight of my closest friends stopped by and each had their own version of temperament enhancing herb. So we sat in the living room of my basement apartment, which of course was also my bedroom, rumpus room, den, and dining room. We sat around on milk crates and bean bag cushions passing chamber pipes, chillums, sticks of Thai, and even a well weathered meerschaum pipe. We were all feeling exceptionally good and listened to Alice’s Restaurant on our rock station. As usual it had us all laughing and grooving without any thoughts to what lay ahead with the family function. Each of us had reasons to not want to go to our homes for thanksgiving, most because we would get the litany of when are you gonna cut your hair?, what college are you going to?, why do you dress like that?, you call that music?, anything to put us down in front of the family. Not wanting to make the convergence into fake family fun all of my friends stayed until 2 o’clock and left my humble basement room feeling like we could take anything our families had to give. Although none of us were truly sure our feet were on the ground we trudged of with our smiles surgically implanted on our faces laughing for no reason whatsoever. As each person left we swore to do it again next year, same time.

Thanksgiving dinners became so much more bearable that day and the tradition continued the following year. By year three, two of the group had moved away, I had moved four towns away, and life began to just sort of happen. By year four it was two friends, each of us with our girlfriends, and after five years all of us had gone our separate ways but promised to keep up the tradition wherever we were. This year at least two of our original group have passed away, another two are just missing by choice, one doesn’t speak with me anymore, and of the other three I’m still in touch with one thanks to Facebook. Every year since I have listened to a radio at noon wherever I am and reflected on the friendships both lost and sustained and have found other friends who do the same thing. These days I no longer reflect on the eight revelers in particular, but all my friends and acquaintances from that era, some whom I have reconnected with on social media, some better left in my past, and all those who have passed.

So every year, I celebrate the epoch of the best people that ever lived, my hippie friends from the early chapters of my life, new hippie friends who lived through similar times, and other people who just love to hear Alices Restaurant each Thanksgiving. That’s what I‘m thankful for… Friendships, love, and a shared desire for peace and equality . My computer will be streaming Alices tomorrow at noon on Q104.3… Tune in and Turn on!! Have a fantastic Thanksgiving Day…. Live and Love in Peace