“How long a life can I expect for my baby?”
This is my personal grief experience. Every human handles their grief in their own way.
Jason was the child I had seven years after I was married. He was born with a serious congenital heart defect called “Transposition of the Great Vessels.” As with most heart defects, his was “one of a kind.” I was told only one in ten thousand children have a defect as complicated as his. He had surgery when he was two and a half months old. He had another one when he was five. He died following that surgery.
It doesn’t seem to matter that I addressed my grief for years and years after my son’s death.
It has been eighteen years. I can still remember the pain as if it just happened. The hardest part to write is how it felt to have that beloved soul amputated from my heart and body.
Through the years, many people have confided in me. They have said that their greatest fear would be to lose one of their children. I’ve been praised for my courage and strength. When life deals you certain cards, there aren’t too many choices. What may appear to be strength, is just dealing with something that unfortunately has happened to you. It is not a choice.
My journey began first with the ambivalence about whether or not to have a child. Something was definitely missing in my life. Mostly, my immaturity hadn’t prepared me for the isolation of my career. I am an artist, and have been a commercial illustrator for thirty years. I have the kind of career that is perfect for a mother; I work out of my home. Most of my illustrations can be seen in the supermarket, for example: Del Monte pickles and Beechnut baby-food.
I was married at the age of 21. After seven years, my husband and I decided to have our first child. I was fortunate to become pregnant quickly. Begin pregnant was not at all pleasant for me; I gained one hundred pounds.
There were problems when I delivered Jason. I had an emergency C-section due to fetal distress. I remember when my husband was gently trying to explain to me that our baby had a severe heart defect. Two pediatric cardiologists were explaining things to me in technical jargon. I was exhausted and in terrible pain. This is the moment I remember most; I was asked if I’d like to see my baby before he was taken away.
At that moment, no less than twenty people entered the operating room. I looked into a glass incubator to see a beautiful baby looking at me. His eyes were alert and wide open. He had tubes everywhere. I put my hands through a little hole. He held onto my finger. He was then taken to another hospital that specialized in cardiac infants.
My husband later said to me, “The cardiologist told me that he thinks you just don’t understand the seriousness of our baby’s heart defect. He said you just don’t get it.”
Perhaps that was because I had asked the question, “How long a life can I expect for my baby?”
Jason meant “healer”
Only a week after that, we were told our baby could be discharged. For someone like me who knew nothing about babies, it was terrifying. 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 a sickly, cardiac child. Nothing at all.
We named out son, Jason, which meant “healer.” Jason would not sleep at night. He would not suck. He cried continuously. A few days later, I put Jason into a rocker and took pictures of him in the backyard. It was a beautiful, clear day. I decided he was actually quite exquisite. It was then when I allowed myself to fall in love with him. It was sunny and he was squinting at me. I will never forget that day. I decided babies weren’t so yucky after all.
Sleep deprivation destroyed my husband and I. My mother stepped in to help. I decided to advertise for help in a Hispanic newspaper. We hired a young girl named Lupe. I was amazed by how much she knew about babies! I guess it was part of her culture. The first thing she did, was wrap Jason tightly in a receiving blanket like he was in a cocoon. Jason suddenly stopped crying. Jason loved a certain shape of pacifier – a Binky. Lupe tried to help us feed him. Jason could only handle small amounts. I remember it was one ounce an hour. It was also extremely precarious. You never knew when to stop. One tiny amount over the edge, and he projectile vomited. All was lost!
We tried syringes. Michael invented a nipple from one of Jason’s favorite pacifiers. It worked!
“Here’s your new baby!”
That first month, it was explained to us that Jason had a hole allowing the oxygen in his blood to mix. However, the hole was closing quickly and we were told he required heart surgery. Jason was turning blue each and every day. I examined him, carefully. I wasn’t sure if I could notice the blueness the way the doctor could. I was able to see it later on when I looked at his pictures.
One day about six weeks later, Jason wouldn’t stop crying. We brought him to the emergency room. Jason 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 in the restroom and coming back when I heard my baby screaming. He was being tube fed through his nose – that was something I had never allowed. I realized then, I could never be a nurse. His screaming made something primal rise up in me. It was such a horrible moment. A nurse had discarded the precious “feeding pacifier.” We did not have a replacement. Jason was wasting away and required tube feeding.
Jason might have died at birth. He might have died before his first surgery, or anytime after that. He ended up living five years. As much as I loved him, I have felt differently than many other bereaved parents I have met. I have often wished he had died before I grew to love him so much!
So now our child was desperately needed his first corrective surgery. Unfortunately, it took a full week for it to happen. I watched Jason come closer and closer to death. Eventually, he was in an oxygen tent, unmoving. I sat in a rocking chair, going back and forth in frenzy. DO SOMETHING! PLEASE!
Finally, the word came to us. Jason would be operated on out at Loma Linda Hospital by a very famous surgeon, Dr. Bailey. He had done many infant heart transplants.
I remember clearly that I had no bags packed. I just stood up from that rocking chair and drove with Michael to Loma Linda, following the ambulance with Jason inside. We took a hotel there for a week. We went to a drugstore to buy pillows, underwear, and toothbrushes. I wore the same clothes for that whole week. I still have the same pillow from 18 years ago; it is my daily reminder of that week.
“He was my existence”
Jason survived the surgery. He continued developing even though he didn’t have much physical strength. He was small, and continued to vomit frequently. I had nothing to gauge what would be considered normal. My main connection with him was that he loved music, and he loved me. Somehow, even though I started out not knowing much about babies – I became an expert with him. We were now very much connected.
I began teaching illustration classes and working again. One day before I was leaving to teach one of my art classes, I felt Jason’s chest. It was fluttering in a peculiar fashion. I raced him over to the emergency room. We were told that Jason now had an arrhythmia.
This was a common result of the heart being cut during surgery. The treatment to stop the arrhythmia is to put the dunk the child into a bucket of ice water. That shocks the heart and sets the rhythm back to normal. We purchased a stethoscope.
Our son would be handed back to us cold and shaking, with his heart beating normally once again. This happened sometimes as often as several times a week!
I was totally devoted to my son. I knew what foods he loved, and searched far and wide to buy them. I stopped socializing with my friends and their babies of a similar age. It was too painful. I did make Jason a big party for his first birthday, and most every one thereafter. I sang and played my guitar. He had his own guitar and always sang his heart out with complete joy and abandon.
Jason began attending preschool. I put him in a carrier on the back of a bicycle to take him there sometimes. He was welcomed and loved by everyone there that knew him. He still threw up almost every single day. He could not eat food at a party. I made friends with some of the other mothers, even though my son was definitely not the same as theirs.
My husband gave up his electrical business. He obtained a full-time government job as an electrician, which was a relief for me since I had done all of his paperwork. He carried Jason everywhere. He especially enjoyed having his son nearby while he was working on home projects.
Unfortunately, my husband and I were still passing ships.
I was very close with my mom. She shared every painful moment with me. She was going to college, and dropped out to help me. She only needed one more semester and she would have graduated. I could not have survived without her love and support.
It was a thrilling moment when Jason learned to swim. I searched everywhere for a swim school and found the perfect one. He loved swimming so much. He tried very hard and almost always threw up in the pool. It didn’t stop him from learning. He was able to go under water and we were so proud of him. One of my favorite pictures of him shows him beaming in his favorite, blue bathrobe.
Our cardiologist had a gruff bedside manner. But although he was irritable, we knew how much he cared about Jason. At our appointments, Jason would pop his head out of the examining room door. His plaintive voice would squeak, “DOCTOR! DOCTOR, are you there?”
This cardiologist came to Jason’s funeral and spoke. I don’t remember anything about the funeral or what he even said. I appreciated that he did that. I remember that he was the head of the hospital’s pediatric cardiology department, but later stepped down due to stress. His depth of caring had done him in.
When I began illustrating, my very first paid assignment was for a cardiology magazine. I illustrated several magazine covers for that publisher, ten years earlier. I gave one of the old, original paintings to our cardiologist. He said, “The heart on the illustration that you’ve shared with me, happens to have a defect similar to Jason’s.” That was an amazing coincidence for me.
I would help 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 – I would marvel at his survival. Deep down, I believed it could not last. I tenderly examined each freckle on his lovely face. He was my existence.
When Jason was five years old, our cardiologist said, “Jason, cannot live without another surgery. He needs a pacemaker. He needs to have a heart valve inserted. His original procedure will need to be redone. I was taken by surprise; I hadn’t expected this. Jason was doing fairly well. He was in preschool, because I had made the decision to wait another year for Kindergarten. He had just had a wonderful fifth birthday party that year.
We went to a top, pediatric cardiac surgeon at another hospital for an opinion. At that appointment, the doctor looked tired. He did not make eye contact with me. Looking back, I realize this doctor was probably not optimistic; I just didn’t know that at the time.
We went ahead and scheduled his surgery.
“An icy wave of dread”
With the date on the calendar, the preschool made a party for Jason and gave him an art desk. He enjoyed drawing and it was a perfect gift for his recovery.
I was always so “hospital prepared.” That meant I could quickly pack a backpack with everything needed for my child and myself while in the hospital. It was important for me to have anything and everything available that might be able to comfort my child. One of my saddest realizations was that after my Jason died, I came home with that backpack. It was excruciating for me.
When I say the opera begins, it means that the death sequence plays out in a looping format. It starts and follows a predictable script, and then the curtain falls. And then it starts, over and over again. As I write this, my heart is pounding. I am getting closer to feeling the wave of unbelievable anguish engulfing my heart.
We found a hotel near the hospital, and decided to stay there the night before Jason’s surgery.
We checked Jason into the hospital.
Jason was in his gown and happy. He was brave and he was ready. He was only five years old, but he was a wise man. He was always extremely articulate. He said to me, “Why are you crying, mommy? I’m the one having the surgery!”
Another trauma for me that night was the arrival of my parents. Michael wasn’t expecting them to come. He asked them to leave after only twenty minutes; he would only allow them to visit briefly. I walked my parents to the elevator and they were both crying. “He can’t just discard us, when you don’t need us!” my mom said. I didn’t know what to say. The feeling was as if my heart was being ripped into pieces. I loved my parents, and I felt their pain. I had to stuff the seething hatred I felt toward my husband that moment. Later on, I had more compassion for him. He didn’t want to share precious time alone with our son.
I was tired and went back to our hotel room. I had to take a sleeping pill, because I knew I needed to sleep – it was absolutely necessary. It was 3:00 a.m., and the phone rang; it was jarring. Now I know why I hate night-time phone calls. A nurse was on the other end. She said, “Hi! Sorry to bother you, but Jason can’t sleep. He was wondering if you could talk with him.”
The room was spinning. The pill had totally knocked me out. I could not move; I could not even speak. I handed the phone to Michael. He spoke tenderly to Jason, and said to me, “I’m going to go back to the hospital to be with him. Maybe he is scared.”
I believe to this day that Jason just wanted to spend a little more time with his dad before he left this earth. I felt so horrible that I was unable to go that night. I have since forgiven myself.
In the morning, I went to the hospital to relieve Michael.
I met Jason’s surgeon for the first time that morning. She did not speak to Jason; it was clear she was preventing herself from forming any emotional attachment with her patient. I do not believe for one moment that she was truly experienced enough for this surgery. But I had trusted our beloved cardiologist when he told us she was capable and competent. He came and hugged Jason, and he wished us luck. He also hugged both Michael and I, as well.
My mother and father came back. The surgery was scheduled for 9 a.m., but was postponed until 11:30 a.m. Jason could not have anything to eat or drink. That was difficult. He was very thirsty. I went with him to the bathroom. He sat on the toilet and made the tiniest of poops. I remember looking at the poop. It was the last one he would ever make.
It was time! Jason was gently laid on a gurney. He was totally brave and relaxed. He was going to be leaving me soon. The orderlies wore masks and pushed the gurney to the elevator. In my dreams, they represented the angels of death. My mother was close by. We followed the gurney. Michael had left early that morning to go be with a friend that was donating platelets for Jason. It was just my mother and I. It was an eternity before the elevator door opened. It might have only been five minutes, but it felt like forever. The door opened. Jason’s voice piped out brightly with, “Goodbye Gramma!” Those were his very last words. The mere mention of those words can send my mother into gut wrenching sobs.
Being in a hospital waiting room is a torturous experience. It was probably 8 p.m. before we were told what was happening.
“Jason’s heart stopped, but we restarted it. He is in critical condition. You may see him.”
I went into the Pediatric Intensive Care Unit. There was a buzz of machines and at least ten people surrounding the bed. I couldn’t get close. My little boy was asleep; he looked flushed and pink. He had a huge box that was protruding from his tiny chest. He only weighed 33 pounds and the box was at least 4 inches square. I had a tape for him of his favorite music. I asked if I could play it. With all the noise of the machines, it was a silly thing to ask. Michael told me he’d take care of it.
I felt a pull. I needed to go home to see Jason’s younger brother. I was worried about how long I had been gone. Jason had made it through. “I could collapse now,” I thought. I told Michael what I wanted to do.
He said, “I’ll stay at the hotel. I’ll be close by. You can go home.” Michael stayed with Jason all night long and played the music for him while holding his hand. He never was conscious.
I came home and clutched my youngest son. He was always so stiff, and so angry. Mostly, he was so silent. What a contrast to Jason! My two-year-old never said a word; he only grunted and squealed. I caressed him, and he was so happy to see me. I put him on my bed next to me; where Michael normally slept. I did not take a sleeping pill, but I passed out from exhaustion.
Suddenly, I woke up in the darkness. An icy wave had come over me. It was so cold, and it gave me chills throughout my body. I had a pit in my stomach. It was so deep, and it was unlike anything I had ever felt in my life. I laid there in the darkness, willing myself not to go to those “worry places.” Suddenly, the phone rang. The voice on the other end was lying to me.
“I’m sorry, but you need to come to the hospital right now. Your son is not doing very well.”
I had the worst panic attack of my life at that moment. It went on and on and on and on. I could not stop shaking in terror. Where the hell were my shoes, my robe, my glasses, and my keys? My young son was shrieking 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 was pounding, and pounding; I thought my head was exploding. It was still dark outside. My parents came into my car. My mother and I were wailing in unison as I drove to the hospital.
We parked. We did not remember where the PICU was. We ran down the wrong hallway. We kept hitting dead ends. We were lost. We were crying out loud. We desperately asked a guard to help us find our way and he pointed. We got lost again.
Suddenly, I saw him. It was Michael. He was at the end of the hallway – at the very end. He was running towards us. He was crying loudly. I started screaming. We were all screaming and crying so loudly because we knew. We knew the unthinkable had happened. Maybe it wasn’t unthinkable, but there was no way for me to have prepared myself for this. Michael sobbed, “HE’S GONE!”
Michael had always been shy and discreet. I had never seen him cry. He finally reminded my parents and me how noisy we were. We stopped screaming.
The surgeon came to us. I dismissed her and told her to go “the hell away.” She was crying. I decided I didn’t have to listen to hearing about cardiac abnormalities ever again! We were told we had to wait; they needed to “fix” Jason up in order for us to see him. My mother said she couldn’t do it, but my father said he would come in with us. They would remove some of the tubes. I was certain the expensive pace maker would be taken out after we left.
It was now time for me to go in and face seeing death. It would be the first dead person I have ever seen in my life.
We walked into the PICU. Every nurse and person there bowed their heads. They had pity and compassion in their eyes, but they avoided looking at us.
I could not see the freckles. I could not hear the voice. My son had been dead now for about three hours. He had probably died at the moment I had felt that wave of dread. I was almost certain of that. I was told that when I was called to come to the hospital, his heart had already stopped.
His pallor was as white as snow. The most shocking part was his blackened lips and lifeless, open eyes. I would never forget his dead eyes for the rest of my life. Only the night before those eyes were intelligent and 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 onto 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 says he will see him in heaven.
“The Opera Begins”
And so began the bereavement period of my life. The opera began with the elevator and it ended with his lifeless corpse. It was endless and it went on and on for me, while life continued for everyone and everything else around me.
My mother said, “This is what I’ve always been afraid of. This is what I knew would be the worst thing that could possibly happen to my little girl, my beloved daughter!”
I collapsed in shock. How to tell everyone? What about my continued existence? I wanted to be with my son! I wanted to be dead!
Where did he go? 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 was his caregiver; I didn’t know what I was supposed to do.
I came home with that useless, hospital backpack. I went 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, and 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 was not in the plan. I still had my other son.
My husband told me that we needed to plan Jason’s funeral. We had to pick out the last clothes for our child to wear. So many people stepped in to help. Decisions had to be made. It was quite impossible for me. I decided to create a eulogy on tape. I have not heard it since the day I made it.
I don’t remember much about the funeral, or even six months after. I was in a fog.
Some friends stepped in to rescue us. It was because they had lost a child, too. They showed up to cook us breakfast. They hung around to have lunch with us. We were plodding in an existence that could only be described as being in 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 my son’s death was real.
The most difficult moment of every single day was to wake up and face what had really 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? What was his voice like again; could I still hear him? There was no color in the world anywhere. There was nothing but shades of gray.
Within a day, the weather became cold. The season changed that very day he died, on October 6th. Every year when it becomes fall, I remember that he is dead. The leaves that fall represent his body crumpling into a pile of dust.
That first Halloween was 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 had 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 grief.
This was what 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 is no reason to talk about it, because that will never change.”
We would go to the movies, but it would be at least a year before we were actually aware of what the movie was about. When people grieve, they often have no ability to concentrate on anything. I was amazed how I could not even read the newspaper.
Life continued for everyone and everything else around me. It did not seem possible that my life could get any worse. It did not 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 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 fraught 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 my 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 other 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 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 realization 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, eighteen years after his death. It was a tremendous release for me. Not long after that, 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 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 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 and led to further loneliness.
One day, I decided surviving wasn’t enough for me anymore. I expressed my honest feelings through writing and music and 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.