Jason's Story

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36:32

Jason's Story

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talks

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After writing Jason’s story in 2010, Judy found healing and began playing her guitar again. This recording is extremely emotional and was recorded during an Insight Timer live session on the 30th anniversary of his death. Judy is hoping that sharing it will encourage others grieving to share their stories. Jason is her angel in the sky and beside her always. Trigger Warning: This practice may include references to death, dying, and the departed.

Meet your Teacher

Los Angeles, California USA

Meet your Teacher

Los Angeles, California USA

Transcript

You are about to listen to the story of my son Jason. My little boy died at the age of five, But he lives on in my music and songs. I recorded this story during a live session on Insight Timer on October 6th of 2022. It is very emotional. It was writing this story that led me to playing the guitar again. I was open to it because I felt so much lighter. I never expected I would ever sing or feel joy in life. Every day I am grateful for my healing. Jason lives on in my music. He is my angel in the sky, The child that is beside me always, Who inspires me so much in every part of my life. Jason Mark. He left his mark. Jason was my first child. He had a serious congenital heart defect called transposition of the great vessels, And like most heart defects, His was one of a kind. I was told only one in 10, 000 children had a defect as complicated as his. When he was two and a half months old, He required open heart surgery. When he was five, He died following a second surgery. Jason might have died at birth. He might have died before his first surgery or any time after that. He ended up living five years. As much as I loved him, I used to feel differently for many other bereaved parents because I often wish he had died before I grew to love him so much. All humans handle grief in their own way. It doesn't seem to matter that I faced and expressed my grief for years and years after my son's death. Even though it has been almost two decades since he died, I can still remember the pain as if it just happened. The most painful part for me to share is how it felt to have his beloved soul amputated from my heart and body. I was ambivalent about having children. I can easily admit that. I married when I was 21, And I was extremely ambitious about succeeding as an artist. I was a commercial illustrator working at home. I painted realistic food illustrations that were printed on billboards, Newspaper inserts, And labels. My paintings could be seen on jars of Del Monte pickles and Beech Nut baby food. But when I reached my mid-20s, Something was definitely missing from my life. My mother used to tell me that being an artist was an excellent career from which to balance motherhood. I had led a sheltered life, And my immaturity hadn't prepared me for the isolation of my career. I missed the close friendships I had during college and began to suffer from depression. After seeing a therapist, I decided to make some changes to my life, Which included becoming a mother. After seven years of marriage, I became pregnant. Jason's severe heart defect wasn't noticed during my pregnancy. It was a few days before my due date when the problems began. I called my doctor because I'd noticed that I hadn't felt the baby moving. I was told to come to the hospital immediately. Labor was induced, But after a few hours, I was told an immediate c-section was necessary because the baby's heartbeat was very irregular. I was given sedation for general anesthesia, And I quickly went from being in labor to being unconscious. When I awoke, I was gagging and vomiting from the intubation. I was still cut open from the c-section because the doctor had not finished. I was screaming and choking from the tubes, But no one could hear me. After what seemed like forever, A nurse came and told me that my baby was very sick. It was 3 a. M. , And a neonatologist had been called, And he was on his way. The doctors were working on the baby, And someone would come and suture me up soon. I was crying and begging for my husband or my parents, But was told they were not allowed in. I had a total screaming meltdown filled with profanity, And then I passed out. Finally, My husband came to my side and told me our baby boy had a congenital heart defect. Because I was exhausted and in terrible pain, I had great difficulty focusing on what the pediatric cardiologist was explaining to me with his technical jargon. I did understand that our baby was being transferred to another hospital that specialized with pediatric cardiac units. The moment I remember most was when I was asked if I would like to see him before he was taken away. A few minutes later, An incubator was wheeled next to my bedside, And no fewer than 20 people entered the room. Through the glass, I could see a large, Beautiful baby with eyes that were wide open and alert. He had tubes all around him, But a nurse said I was allowed to put my hand through a hole in the glass. I marveled as he briefly held onto my finger with his tiny hand. I was in horrible pain. I was inconsolable. My husband said, The cardiologist told me he didn't think he understood the seriousness of our baby's heart defect. I told my husband that it was probably because I had asked the doctor, How long a life can I expect for my baby? A few days later, We decided to name our son Jason, Which meant healer. I was transferred to the hospital where Jason was, Despite being in terrible pain from my c-section. I'll never forget that ride in the ambulance, Only two days after major surgery. Whenever we hit a bump in the road, I screamed at the top of my lungs in agony. My mother holding my hand sobbed along with me. It was almost as if she felt my actual pain. When I first arrived at the hospital where Jason was, I was in too much pain to get into a wheelchair. It was hard for me to imagine ever straightening up and walking upright again. I was laid onto a gurney in order to see Jason. I did not want to know him. I did not want to become too attached. The next day, I attempted to nurse him, But he was weak and flaccid. With all the tubes, It was awkward and he had no strength to suck it all. A machine was brought to my room so I could pump my breast milk out for him. I was an emotional wreck and I found the machine very irritating and difficult to use. A kind nurse tried to help me, But after two days, I decided I couldn't handle it anymore. I noticed that the nurses treated me coldly after that. I felt like a failure for giving up. All I wanted to do was cry in my bed. The hospital fed Jason while I slept and concentrated on healing. Only a week later, Jason was discharged. I had no experience with babies, So I was terrified. I felt like I was being sent out on a ship into dark waters with an unknown destination. There was no manual for me to look at to understand how to care for such a sick child. Nothing at all. Despite my exhaustion and fear, I decided the next day to put Jason into a rocker and take pictures of him in the backyard. It was a beautiful sunny day and he squinted at me. As I examined him, I decided he was actually quite exquisite. It was then that I allowed myself to fall in love with him. I'll never forget that day. I decided babies weren't so yucky after all. Jason would not sleep at night. He could not suck. He cried continuously. Sleep deprivation destroyed my husband and me. My mother came every day to help. My mother and I were very close and she shared every painful moment with me. I could not have survived without her love and support, But it became clear we needed more help. I hired a young girl and was amazed by how much she knew about babies. The first thing she did was to wrap Jason tightly in a receiving blanket like he was in a cocoon and after that he stopped crying. Jason was almost impossible to feed. We tried every form of nipple that was available, But still he could not suck. So instead we fed him with eye droppers and syringes. Jason did love a certain shape of pacifier, A binky. Because he could suck on that, My husband invented a nipple from it and amazingly it worked. Still, Jason could only handle small amounts. One ounce an hour. It was extremely precarious and important to know when to stop. One tiny amount over the edge and he projectile vomited. The cardiologist explained to us that Jason had a temporary hole in his heart which allowed for some oxygen to enter his bloodstream despite his heart being transposed or backwards. However, Within a few months the hole would close and he would require open heart surgery. Not long after that appointment, Jason's fingernails and lips began to turn blue from lack of oxygen as the hole began to close. One evening we took Jason to urgent care when he wouldn't stop crying. He was hospitalized and the next day a procedure was done in the heart catheterization lab. He seemed better for a few days but then became sick again. We brought Jason back to the hospital. This time when he was put on a monitor, We were told the oxygen sensor was broken. It wasn't possible for his oxygen to register so low. It turned out it was that low. I was coming back from the restroom when I heard my child screaming. His screaming made something primal rise up in me. His screams resulted from a tube that had been inserted into his nose to feed him. That was something I had never allowed. The nurse said Jason was wasting away and required the tube. I explained that I was able to feed him but his special nipple was missing from the bedside table. It turned out that someone had discarded our precious modified pacifier. There was no replacement. I was heart sick to see Jason wailing and pulling at the tube in his nose. Jason desperately needed his first corrective heart surgery and unfortunately it took a full week to happen. I watched my child unmoving in an oxygen tent come closer and closer to death. I rocked in a chair going back and forth in a frenzy. Inside I was screaming, Do something please! Finally the word came to us. A well-known pediatric heart surgeon would be operating on Jason. He would be transferred to another hospital a few hours away for that surgery. I remember clearly how I stood up from that rocking chair and drove with my husband following the ambulance with Jason inside. We stayed at a hotel near the hospital. I wore the same clothes for that entire week. Jason survived the surgery and came home. He was now pink. The blueness was gone but not long afterwards I noticed his heartbeat was fluttering in a peculiar fashion. I raced him to the emergency room and was told he had an arrhythmia. The cardiologist explained that it was a common result of the heart being cut during surgery. The treatment to stop the irregular heart rhythm was to dunk my child in a bucket of ice because it would shock his heart back into a normal rhythm. Jason was handed back to me cold and shaking with his heart beating normally once again. For a few months this sometimes happens several times a week. Jason continued developing but he was small and he vomited easily and frequently. I had nothing to gauge what would be considered normal. Somehow even though I started out knowing very little about babies I became an expert with him. I was totally devoted to my son. I knew what foods he loved and I searched far and wide to buy them. Jason had wonderful birthday parties every year of his life. For his first birthday we had a big party at our home with many friends. I sang and I played his favorite songs on my guitar. He loved music and he had his own guitar. He always sang his heart out with abandon and joy. Although at the time I hardly played my guitar much anymore for myself, Sharing the music Jason loved so much made it difficult after he died for me to ever play again. As he got older he began attending preschool. Everyone there who knew him loved him. I made friends with some of the other mothers even though my son was definitely not the same as theirs. At birthday parties he could not eat any of the food and he still threw up almost every single day. My energy was directed toward making his life as comfortable as possible. There were certain times when I wished his care were easier but I avoided facing my fears that my child had a sickly life ahead of him. I searched everywhere for swim school and I found the perfect one. He loved swimming so much. He tried very hard but almost always threw up in the pool. It didn't stop him from learning to go underwater. I was thrilled and so proud of him. When Jason was five and a half years old I was stunned when my cardiologist informed me that he needed another open heart surgery. I had hoped it would have waited until he was older. He had just had a wonderful fifth birthday party and was doing well in preschool. I had decided to delay kindergarten for another year. Jason also had a younger brother now. This time Jason's surgery would be more challenging for me because I was concerned about being away from my other son. The cardiologist explained that Jason now required a new heart valve as well as a pacemaker. His original procedure would need to be redone. When he told me that Jason would have a different surgeon this time I was worried. He reassured me and said she's an excellent surgeon. If he were my child I would feel confident using her. I really trusted this cardiologist despite his gruff bedside manner. At our appointments Jason would pop his head out of the examining room and his plaintive voice would squeak, Doctor doctor are you coming? His cardiologist often looked annoyed at those moments but I knew how much he cared about Jason. I swallowed my fear as I helped my little boy go to sleep every night. He was small and would lie across my chest. I could feel his heart beating next to mine and I would marvel at his survival. I tenderly examined each freckle on his lovely face. He was my existence and I treasured our time together but deep down I knew it could not last. Jason's cardiologist had gently explained that Jason would slowly deteriorate without another heart surgery. Upon hearing that I wanted the surgery scheduled as soon as possible. With the date on the calendar the preschool threw a party for my child and gave him a personalized art desk. Jason enjoyed drawing and it was a perfect gift for his anticipated recovery. I found a hotel near the hospital and decided to stay there the night before Jason's surgery. Our youngest son stayed at home with a babysitter. We checked Jason into the hospital. He happily put on his gown and was completely calm and brave about what he would be facing the following morning. Even though he was only five years old, In many ways he was a wise old man. His voice was chipper when he said to me, Why are you crying mommy? I'm the one having the surgery. I experienced another trauma recalling how my parents came to visit that night. My husband wasn't expecting them to come. He told them they could visit briefly and asked them to leave after only 20 minutes. I was very close to my parents and I felt their pain. I walked them out to the elevator and they were both crying. He can't just discard us when we're not needed, My mother said. I didn't know what to say. I felt as if my heart was being ripped into pieces. I had to stuff down seething hatred I felt toward my husband at that moment. Later on, I had more compassion for him. He didn't want to share precious time alone with our son. In the morning, Jason met his surgeon for the first time. She did not speak to him at all. It was clear she did not want to form any emotional attachment with her patient. Our beloved cardiologist came and wished us luck. He gave Jason a big hug and then he hugged me and my husband as well. My husband left to go meet a friend who was donating platelets for Jason. My mother and father came back to offer their support. The surgery had been scheduled for 9 a. M but was postponed until 11 30 a. M. Jason could not have anything to eat or drink which was difficult because he was very thirsty. I went with him into the bathroom. He sat on the toilet and made the tiniest of poops. I remember looking at those poops. They were the last ones he would ever make. Finally, It was time for him to go to surgery. He obediently laid down on a gurney, Brave, Relaxed, And ready. The masked orderlies pushed the gurney to the elevator. My mother and I followed the gurney. Although it may have only been five minutes, Time was frozen as we waited for the elevator door to open. When the door opened, Jason's voice piped out brightly, Goodbye grandma. The mere mention of those words would launch my mother into gut-wrenching sobs for years. They were Jason's very last words on earth. Just writing this has made my heart pound and I can feel a wave of unbelievable anguish engulfing my heart. Being in a hospital waiting room was a torturous experience that combined exhaustion with anxiety. It was nine hours later before we were told what was happening. An awful premonition gripped me when our cardiologist came to tell us that Jason's heart had stopped during the surgery but had been restarted. We were finally allowed to see him. As I went into the pediatric intensive care unit, I heard a buzz of machines. Many people surrounded Jason so I couldn't get very close. A huge box that held a new pacemaker protruded from his tiny chest. My little boy was asleep. He looked flushed and pink. I had brought a tape recorder with me to play his favorite music but it seemed like a silly idea because the room was so noisy. Jason had survived the surgery. He was alive so I could clap. I told my husband I wanted to go home to see our other son. He said he'd stay at the hotel and he'd be close by. So I went home later that evening. When my youngest son saw me, He was so happy. He was only a baby, Not even two years old. I clutched him tightly and then put him on the bed next to me. I passed out quickly from exhaustion. Suddenly, I woke up in the darkness. An icy wave of dread came over me that sent chills throughout my body. I had a pit in my stomach that was deeper than anything I had ever experienced. In terror, I willed myself to stay calm. My fear only increased with the jarring sound of the telephone ringing. The voice on the other end said I needed to come to the hospital right away. She said my son was not doing very well. I found out later that Jason had already died when that call was made. I experienced the worst panic attack of my life. I could not stop shaking. My heart pounded so loudly I could not hear or think. Where the hell were my shoes, My robe, My glasses, My keys? I woke up my younger son and he shrieked as I brought him to his babysitter. I called my parents. They were waiting for me to pick them up. It was the longest drive of my life. My heart continued pounding and pounding. I thought my head would explode. It was still dark outside when my parents got into my car. My mother and I wailed as I drove to the hospital. We parked but I couldn't remember where the pediatric intensive care unit was. We ran down the wrong hallway and kept hitting dead ends. We were lost and I started crying out loud. We desperately asked a guard to show the way and then we got lost again. Suddenly I saw my husband at the end of the hallway. He was running towards us crying loudly. He sobbed. He's gone. I started screaming. We all screamed and cried so loudly because the unthinkable had happened. There was no way for me to have prepared myself for this. My husband was always shy and discreet. I had never seen him cry before. Our sobs and wails went on and on until he told me that we were way too noisy. The screaming stopped. The surgeon came to see us. She was crying too. I dismissed her. Go away. I decided I didn't have to listen to any more medical jargon about cardiac abnormalities ever again. We were told we had to wait. They needed to fix our child up in order for us to see him. My mother said she couldn't face seeing Jason dead but my father said he would come in with us. It was soon time for me to go in and face seeing death. My son would be the first dead person I had ever seen in my life. As we walked into the unit every nurse and person there bowed their heads. They had pity and compassion in their eyes but they avoided looking at us. Jason had actually been dead for about three hours. I was told his heart had already stopped when I was called to come to the hospital. I am certain that he died at the very moment I felt that wave of dread. I could not see his freckles because his face was frosty white as snow. The most shocking part was his blackened lips. His eyes were open, Unforgettable, Lifeless, And empty. I will never forget those dead crossed eyes for the rest of my life. Only the night before those same eyes were intelligent, Sparkling with joy and laughter. There was no question that he was gone and this was only a corpse. He felt so cold and stiff. I held on to him as long as I could. I cried and cried. My father says that every time he sees a penny on the ground he is reminded of Jason. Jason loved finding pennies. My dad says when he sees a penny he believes Jason is with him. He told me he looks forward to meeting Jason in heaven. My mother told me that this was the worst thing that could possibly have happened to her beloved daughter. This was what she had always feared. And so the bereavement period of my life began. An opera played in my mind over and over again. I lived with it for years and years. There was no melody or music. The orderlies in their masks represented the angels of death as they slowly pushed Jason's gurney to the elevator. I heard Jason's sweet voice telling his grandma goodbye, Followed by the jarring sound of the telephone ringing, Which filled me with terror. My mother and I were sobbing while running down endless hospital corridors. I pictured the opera ending with Jason's lifeless eyes staring in different directions and then it would start all over again. The first few days were an absolute horror. How would I tell everyone what about my continued existence? I wanted to be with my son. I wanted to be dead. Where had he gone? He needed me so much. How could it be possible that he didn't need me anymore? It didn't seem possible. I went to those places over and over again. He's cold. He's hungry. He's scared. He's alone. He needs me. The truth was that I needed him. I had been his caregiver and I didn't know what I was supposed to do. I went home and into his bedroom and covered my head with his pillow, The one that still had his odor on it. I cried enough tears to fill an ocean. There was no food I could taste. Even going to the bathroom was strange. Why was I still alive? This was too much pain for anyone to possibly still be alive with. I wished I could die to be with him. I knew, However, That that was not in the plan. I still had my other son. My husband told me that we needed to arrange Jason's funeral. I had to pick out the last clothes our child would ever wear. So many wonderful people stepped in to help. Decisions had to be made, But I could not function. Jason's cardiologist came to the funeral and spoke. I was in a fog. Even though I don't remember what he said, I always appreciated his attendance and concern for our family. He was the head of the hospital's pediatric cardiology department, But I learned years later that he had to step down due to stress. I wondered if perhaps his depth of caring had done him in. I made a difficult trip to the hospital in order to thank his cardiologist a few days after the funeral. I gave him an original painting of mine that had been used for the cover of a cardiology magazine. He told me he planned to frame it in his office. It was an amazing coincidence when he said gently, Did you realize that the heart you painted appears to have a defect similar to Jason's? For a few weeks after the funeral, Some friends stepped in to rescue us. They too had lost a child. They showed up to cook breakfast and then hung around to have lunch. Our plodding existence could best be described as one of total shock. Books have been written about the stages of grief. I have lived all of those stages. The numbness was bizarre. There was no sense of time. Eating, Sleeping, Living seemed outside the realm of what it once was. There was no purpose for anything anymore. There was no way to control the endless parade of intensely painful repetitive thoughts. It was too soon for me to be able to accept that my son's death was real. The most difficult moment of every single day was to wake up and face what had happened. I did not want to wake up again ever. I looked at the sky. Could he be there? I looked at a bird, At a butterfly. Could his soul be visiting me? I strained to hear his voice again. Was he calling for his mommy? There was no color in the world anywhere. There was nothing but shades of gray. Within a day, The weather became cold. I felt that the season changed on the very day he died on October 6. Every year when fall arrives, I remember that he is dead. The fallen leaves represent his body crumpling into a pile of dust. Halloween came less than a month after he died. All I could think of was his skeletal body in the cold ground. The scary monsters were nothing compared to what I conjured up in my mind. The sympathy cards continued to arrive. The preschool took extra special care of my surviving son. He needed it. His mother had vacated the mommy premises. My husband went back to work. He never cried again. He did not want to discuss the fact that he had ever cried. He did not want to discuss his grief. He said to me, I don't expect to feel one iota better ever. I will always feel this pain for the rest of my life. There's no reason to talk about it, Because it will never change. Life continued for everyone and everything else around me. It didn't seem possible that my life could get any worse. It didn't seem possible that it could get any better. It was what it was. Empty, Sad, Excruciating, Endless. When I finally connected with other bereaved parents, We all agreed that the grief was harder to bear as time went on. Six months marked the absolute lowest moment. The support was gone and everyone expected me to get on with my life. It was time to just get over it. But at six months, The shock was just starting to wear off and the painful reality was only just beginning. The first year was extremely painful because every event was a first. The first Mother's Day and the first birthday without my beloved child were horrible. Every holiday marked the first time my child wasn't there to celebrate with me. The second year was worse than the first year. I had survived the first year but I still cried every day. I was so discouraged and felt like life was not worth living anymore. I had no hope of ever feeling any better. Another bereaved mother once told me, It took me about seven years. In seven years, The agony will subside and you will definitely start to feel better. Well, She was right. I had to get used to the idea of not taking care of Jason anymore. I had done it so well for five years. I didn't know how to stop. Eventually, I cleaned out his room. For a bereaved parent, That is a difficult step to face. I spent many days crying on his bed holding one of his shirts against my cheek. I gave birth to two more children after pregnancies brought with the fear that I'd have another child with a heart defect. I sobbed inconsolably while giving birth. When I nursed my babies and later on saw what healthy children could do, I felt both amazed and anguished remembering Jason and his frailty. I went through the motions and escaped into caring for their needs. I adjusted to life without Jason. I had to face going to children's birthday parties and holiday celebrations. I had to walk through the market and not cry when I saw the food I used to buy for him. I had to learn how to live while seeing other children his age grow up. I had to accept that he would never grow up. He would never outlive me. He would never be anything but what he was. He was my first child and he changed me forever. He was the child of mine that caused me so much pain. He was an amazing human that came out of my body but was never mine to begin with. That revelation was truly the beginning of my healing. Loving someone doesn't make him or her belong to you. I've accepted this with my living children as well. I originally wrote my story about Jason in 2010, 18 years after his death. It was a tremendous relief for me. Not long after, I began to play my guitar again. I was incredulous that I felt joyful. It was actually a miracle because my life was so stressful at that time. I grieved deeply for many years and I allowed myself to feel the pain. I pictured my grief as a doorway that I went through rather than around. I was always proud of my survival but I wish I had allowed myself to move beyond simply surviving. My zombie-like existence was familiar and it certainly would have continued if I hadn't made changes to my life. As the years passed, I felt like I was wounded and damaged. I seldom mentioned my grief because I wanted my friends to feel they could confide in me. Bringing up the loss of my child would cause their concerns to seem insignificant. This was so different from my angry phase of bereavement when I didn't want to hear about the trivial things people often complained about. But I learned that anger only isolated me. One day, I decided surviving wasn't enough for me. I expressed my honest feelings through writing and music and I unburdened my soul. I never realized how much energy was required to hold everything in. I believed I was incapable of happiness after suffering the loss of what I had so deeply loved. I thought the best times in life were behind me. I am so grateful now because I don't feel that way anymore.