Tag: family

The First Father’s Day

On By Terrapin - The JourneyIn Keith Jaret, Maureen Jaret, The Existential's Wife4 Comments

IMG_0033

**I posted this on my social media on Father’s Day

When Keith and I started talking about getting married, I was really not interested in having children, and since he already had two children from his first marriage, I asked him “are you ok if your two children are all the children you have?” He told me “yes, but I think you will change your mind someday!” I told him, “I don’t think so,” and we go on with our lives.

But then, my beloved grandfather dies, I realized what it meant to have a family of my own, and having watched Keith with his own children, I knew that he would be a great father to our child. I told Keith, “ok I hate to admit it, but you were right.” “I think I want to have a child, just one, and also I want to go back to work after six weeks, are you ok with that?” of course he was thrilled!!

On February 26, 1990, our beautiful daughter Megan was born. As Megan got sick, it became apparent that I would not be able to go back to work. Keith was working at the Marriott Corp. at Paine-Webber, and he took on two more jobs to make up for our lost income! When he would come home, the first thing he would do – if it wasn’t too late – is tell me to get some rest, I will take care of our little girl! He was the calming force in our small family, and Meg loved when her daddy held her in his massive arms against his chest. On the day she died, he whispered in her ear; you can let go, my little little (his favorite thing he called her), we love you, you do not need to hold on for us!

One year later we gave birth to our daughter Kellie; it was challenging being pregnant and mourning at the same time! Keith, was my strength, my rock, and my navigator through our new norm. He took on all the stress of everything so that my pregnancy would be as “stressless” as possible. When are beautiful daughter Kellie was born, completely healthy, we started to build a life again.

In January 1994, Keith’s son Justin had an opportunity to live with us, and just like that, we became a family of four! It was so amazing watching Keith with his children. Cultivating their strengths, teasing them with pranks, reading stories to Kellie and telling Justin stories of his adventures! Both kids were able to go to him and tell him anything. He was not judgy, but he was not a pushover either. If the kids were in trouble, my first reaction was to freak out and ground them, but he would have his calm Keith way, and the kids would usually feel far worse because they disappointed their dad!

As the kids had become adults, Keith, became their best friend! He loved the man that Justin had become! He was proud of the husband and father that he was, and I was so happy that Justin had the most amazing example of what it means to be a husband and father. My heart goes out to Kellie, who has yet to start her life, Keith will never see her career choice, who she decides to spend the rest of her life with, or ever meet her children. I am confident though that with the special relationship she had with her dad, he will be with her throughout every decision she makes through her life, and he will help her to make the right choices.

This Father’s Day will be the most difficult for all of us, but as we think of the kind of father he was, all we can do is smile throughout the day! HAPPY FATHER’S DAY! #keithandmegan💜💜 #fathersday

Tears On My Keyboard

On By Terrapin - The JourneyIn UncategorizedLeave a comment

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

Hey Man Don’t Have A Heart Attack!

On By Terrapin - The JourneyIn UncategorizedLeave a comment

heart attack

I was sitting alone in one of the doctors rooms after my first stress test. I could have saved them a lot of trouble because the minute he mentioned stress test I was at 1000% stress level. My heart rate shot up to a million beats a minute and I couldn’t breath. When he suggested I get wired up and prepared to take a cardiac stress test immediately I was already off the scale. The suggestion morphed into a statement in a flash and before I knew it I was laying on my back having my chest shaved by a young nurse. Unfortunately it lacked any of the grandeur of a nurse patient fantasy and went directly to more of a tense horror movie mode completely by passing any intimate after hours flick sentiments. To begin with she applied some rather cold gel and not warm oily sensuous substance. There was no disrobing unless you count the fact that I removed my shirt exposing the hiding spot of all the cholesterol I have indulged in the last few years. Instead of a teasing slightly hoarse voice she had a very matter of fact tone about her. “This may be a bit cold Mr. Hilltop.” Hmm, no first name basis either! After lathering on the cold gel she placed suction cups with colored wires on my now hairless chest to fully complete the diminishing of the mood. I took note of where the red wire was in case I needed to make an emergency cut to avoid explosion. They always cut the red one. Right? Or is the green one? “Okay honey, you’re ready for the treadmill.” Still not in a hoarse sultry whisper but rather far too businesslike. I ambled over to the treadmill and got in place. The doctor came back in, turned a few knobs, and it was off to the races.
He started me off at a slow trot and gradually increased my speed. Feeling uncomfortable and nervous to begin with I was having difficulty negotiating the floor moving under my feet so I held tightly to the handrails for support. “JT, try and take your hands away from the rails and just walk normal.” Shit! Busted. I did my best but found myself unable to control my balance and I was surprised at my lack of co-ordination as well as how easily I became winded as the test progressed. Now I’m freaking out because my chest is wired, the treadmill is kicking my ass, I am running short of breath, and the doctors writing notes with a face that looked far too concerned to have any calming effect on me. Jane get me off this thing! If this is really a test I didn’t feel I was getting very good grades today, wish I had studied more. How did I end up in this predicament anyway?
Obviously I’m here because I was having stress issues. I found myself in this cardiologist office because I was having difficulty catching my breath and felt light pressure in my chest. After prodding his cold stethoscope all over my chest and back while making me gasp for breath my primary doctor was concerned about something so he decided I should be a heart specialist’s problem and not his. He made me an appointment at the cardiologist center and that’s when the stress began to spike only getting higher as the visit progressed. Being chef I was used to high pressure but this put me over the proverbial boiling point. I was a chef/co-owner on this one particular venture so the pressure cooked all that much higher. Add to that the fact that my prep kitchen was a flight of stairs away from the service line, and the storage rooms were on the opposite end of another staircase, the height of service was high pressure plus an abundance of running up and down stairs at warp speed. No wonder my breathing was labored. At first is was just a night here or a night there, but it eventually escalated to a daily routine of not being able to fully catch my breath combined with constant pressure in my chest. I sensed something was off, but no worries, I’m young and invincible. Nothing scares me. Well up until the doctor mentioned cardiologist anyway, that’s when I became a gelatinous bundle of frightened nervous energy.
Anyway, after the treadmill torture left me wheezing and achy the nurse unwired my chest and led me into another room instructing me to sit down. I’ve been working in restaurants my entire career but for the life of me I can’t figure out why the servers are called waiters. Waiters should be another term for doctor patients because with all their waiting rooms and procedures doctor are the supreme beings of making us wait. So I sat while supposedly the Doc was grading my tests. I hoped he graded with a curve because I could sure go with some good news about now. Twenty minutes later the nurse came back in the room with some papers for me to sign. She placed one of her hands on mine to comfort me speaking evenly in a tone laced with empathy, “Mr. Hilltop, The Doctor wants you to retake the test. He is a little concerned with the results but wants to have another try. We have two options here. If the test runs okay we can schedule you for a more detailed evaluation, but if it doesn’t go well we will need to consider keeping you in the hospital over the weekend for observation.” She may as well have delivered the news with a baseball bat because I was floored, had just been metaphorically knocked upside the head with a Louisville Slugger. I opened my mouth to try and respond but I was choking on emotion, thinking not about me or my potential death, but I was concerned what would happen to my family, how would this effect them with me not being there for them. I have two grown children who are old enough to cope, but my baby girl was only five and she relied on me for many things. My wife could cope mentally, but emotionally we were both very fragile. We had lost our first child at the age of two only six years ago and had still not fully processed that. But that’s what goes on in your head, the nurse says hospital and you hear hospice, she says observations and you hear funeral viewing. I was certain what she was telling me is if I fail this make up exam I will get left back and never graduate. Either I pulled it together and passed this test or I’m headed straight for my death.
The mind is a strange thing. I felt blood rushing to my face and a profound sadness set in. I was convinced I was going to die soon, the doctor had come by to confirm what the nurse had told me stating with as much compassion as he could that I had has a mild cardiac infarction. (They use various medical terms to throw us off, he knew if he said heart attack I would have freaked, but what he didn’t know is I watched a lot of hospital centered TV shows so I knew an infarction was an attack). Tempered as it was it still was hard to process. They left me alone to cram for the make up exam and instead of studying the dynamics of treadmills I found myself pre-occupied with death. Mine! As an existentialist I accept the fact that my death is inevitable, but as a human I was more focused on what it would mean emotionally to the people who care about me. I thought about the effect it would have on my children, my wife, my family. The pressure was no longer in my chest but in my eyes as my tear ducts swelled up with a profound sense of void. I wanted to cry in someone’s arms but was all alone, in the abyss of doctors waiting rooms. My death would likely cause some emotional breakdowns and it troubled me that I would be the cause of pain to my family. I thought about how deeply I loved everyone, took a long full breath and went back to the treadmill to kick some ass in the next test.
Having been through the test once I was much more comfortable, and armed with the fact that I share so much love I took the test from a much stronger standpoint. Now I know I didn’t ace the test, but I also knew I had done well enough to earn another opportunity to see my family. I was scheduled for a nuclear stress test which eventually confirmed that I did in fact have a mild heart attack and ha to make some life adjustments. I took the news much more positively, vowing to make every attempt at regaining my health and living a healthier lifestyle. Fifteen years later I’m still alive and kicking. I discovered that life is worthwhile because there is a thing called love. A mysterious unexplainable concept that fills us with good feelings. There are times for all of us when we think its over, or maybe it would be better if we were gone and not a burden to our loved ones. We aren’t burdens, we are wings that help our loved ones soar. They need us as much as we need them and that’s what makes it so damn beautiful.. That’s what I learned from this episode, this infarction of my life. At times I still get down on myself, feel myself unworthy for one reason or another, and often times even wonder if its all worth it. That’s when I think back to that moment, the one in which I discovered how intensely powerful love is, how important we are to each other. Give your love freely and frequently, don’t wait until its too late. Our true strength lies within each other. PEACE