Devastated Parents Describe The Unfathomable Grief of Losing A Child.
I can't fathom what it's like to lose a child: the order of the universe is unravelled when someone young dies before someone old and there's nothing that can be done to reset that order. All we can do is grieve together and look to the future with hope.
People on Quora were asked: "What is it like to lose a child?" These are some of the most insightful and moving answers.
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My two oldest were identical twin girls, sharing an amniotic sac. In our family, the word "twins" is nearly synonymous with "doom". My great-aunt had a set of twins prematurely, who died; my mother had a set of twins prematurely, who died; and in 2008 I had a set of twins prematurely, who died. Each generation hoped that there would be sufficient advances in medicine when their time came, and each ended up bitterly disappointed.
Additionally, I had an extremely complicated medical history and had been told I'd never have children. The joy of solving my infertility problem, followed by the stunned horror that I carried a set of very high-risk twins, was an awful rollercoaster of emotions, but I tried to keep my hopes up. I told people, "If I can just get all of us out of this alive." I hoped that by saying so, I could make it happen. If I spoke my worst fear aloud, it could never come true. Really childish thinking, but the sort of thinking that comes around during a period of utter despair.
My water broke early and I tried to see out the pregnancy on total bedrest. Nonetheless, the twins were born desperately premature, one month apart. Each lived for less than a day as a tiny preemie. We held them as they died. I am convinced that there is nothing so horrible as giving birth to a warm, beautiful, squirming baby, who slowly grows cold and still in your arms. "Unnatural" doesn't even begin to cover it. Your hormones are a mess. You are watching your own progeny fading away to nothing before your very eyes. Watching your child die is watching hope die.
The girls being born a month apart drew that slow death of hope out and made it intolerable. The hospital released my oldest daughter's tiny body to the care of my father, to transport to the family cemetery for burial. He had to make the four hour trip with his dead granddaughter in the backseat, which is something I can't even imagine. I wasn't able to attend her funeral because I was flat on my back in the hospital, trying with every fiber of my being to give a few more weeks' worth of a fighting chance to her sister. Then I developed a life-threatening infection and we couldn't wait any longer. Once again, I gave birth to a tiny bundle of hope who tossed her little face back and forth as she struggled to breathe. Once again, her movements slowed and she grew still and cold. I'm medically educated. When they handed her to me, I tried, furtively, to massage her little body back to life, anything, so she would give a thin little cry and I could call out, you were mistaken! She's alive! Help me save her! But she stayed still and cold. No one helped me save her.
I finally got to their grave, since I had no babies left to protect. She was in a pink pearlescent plastic coffin that looked like one of those storage shoeboxes. I sobbed at her funeral, finally able to cry for both of my girls. I was deeply embarrassed to choke out, "I'm so sorry. I tried so hard." in front of my stoic relatives. I became fiercely protective of their grave, as if it were the only way left to me to take care of them. I chose the most feminine pink granite I could find, with little flowers and baby shoes. I painstakingly constructed decorations for every season, every holiday, their birthdays.
Strangely enough, in the midst of that pain, it's all the perceived insults that I remember. When I hobbled back to my hospital bed after losing the younger twin, there was a note to call the billing office to discuss payment. I would shake with rage when people would call my daughters' birth and death, dismissively, a "miscarriage". As if miscarriages weren't horrible already! But giving birth to a premature infant, and having it die in your arms, is not the same as a miscarriage. One person I never forgave was a very hardbitten elderly woman who had been a nurse in the forties. She told me, "I don't know why you're wasting money on a funeral. You should have had the hospital just throw them away." From that moment until the day she died, I hated that woman. I still do, if I want to be perfectly honest with myself.
It comes back and hits me in bad ways. I get horribly depressed in the springtime, around the time they were born. Once, I was at a county fair, and some funeral home had taken it upon themselves to make a display of baby coffins (I suppose because they fit into the booth space). I had a panic attack and had to leave the building. Anti-abortion stuff is problematic, too. Every once in a while, a photo of a deceased premature infant shows up in my Facebook feed. "This is the same age as some late-term abortions...this child is old enough to live!". The feeling I get is something like I imagine getting kicked in the chest by a horse would be.
Some of the crying jags are so bad that I find myself doubled-over with no recollection of how I got that way.
About 6 months after the death of my younger twin, I met up with a woman at a dinner. She had a premature infant she had left in the hospital's care, and she left her child pretty often to go socialize. I resented her casual attitude; if it had been me, and my girls were living still, I would be at the hospital with them every waking moment and probably sleeping too. She had heard of my daughters' deaths, but had forgotten. She cornered me and said, "You just can't imagine what it's like to go have a baby and leave without it in your arms. You just can't imagine what that's like." I clenched my teeth, not wanting to tell her I might not be able to imagine leaving a preemie in the NICU but I could imagine leaving two in the morgue. You grow a certain amount of graciousness with people who say stupid things without thinking. If you didn't, you might never be able to interact with people again.
I would probably be deeply mentally ill at this point had it not been for the fact that I conceived again, in 2010, and this time (maybe because my obstetrician took me more seriously?) delivered a healthy, full-term baby girl via c-section, with all of the necessary precautions. I had a strange feeling of self-protective detachment. Surely this wasn't real, surely I did not deserve a living child, surely I was dreaming. She was strong, she was healthy, she breathed without help. She would live.
Today, as a five-year-old, she helps me tend her sisters' grave. I want her to be comfortable caring for it, and I feel better knowing someone will after I can't anymore. I haven't spared her the knowledge of her having two older sisters who were premature and didn't live. She speaks of them as "my sisters", and when she's feeling lonely as an only child, she will tell me she wishes she had them to play with. We try to keep their grave pretty and their memory living on, because that's all we have.
What does it feel like to lose a child? It feels like giving birth, but instead of bringing a child into this world, it is the giving of the child to whatever is beyond this world. And instead of a single event, it happens again and again and again. It hijacks you in the middle of a concert, or while listening to a lecture, or while driving to the grocery store.
First you realize that it is harder and harder to catch your breath, and a vague panic sets in as your body takes over and you recede as an observer to a process that you cannot stop. Then the pains begin, waves of contractions, intensifying, then receding just long enough so you can gasp at the air before they come again. Then as they circle in, more and more intense, there is the need to bear down, to push and push, and to grit your teeth against the screams that will not be stopped, but grow louder and louder, til there is no voice left. It only comes to a close when exhaustion sets in. But it will come again. It comes unbidden, without thought, and keeps me always in this middle place, between worlds, never wholly here nor there. 'Stayed by what was, and pulled by what would be'. That is what it is like.
Being a parent has been the most rewarding - and the most painful experience of my life. I can hardly imagine what my life would be like if I had not been a parent. I am grateful that my wife of over 36 years has been there to help me through every parenting experience. My heart goes out to those single parents who have to do this without the support of a partner.
I have had countless opportunities for emotional growth as a result of raising children. Until now, I haven't written specifically about the experience of losing our daughter. Following are some of the things I've learned about myself, some of the feelings I have felt, and how they have impacted my belief system.
I have had the privilege of taking care of cancer patients for 35 years now (if you count residency). During the first five years after completing my residency, I was an associate professor of Radiation Oncology at the Baylor Medical School in Houston and director of the residency training program. We treated the kids with cancer at Texas Children's Hospital. My wife and I had three sons at that time, all under the age of seven. All of the young boys I took care of at work reminded me of my own sons. One of the main reasons I treated the children was because I was the youngest faculty member. It was a job that no one wanted to do. It was very sad, and it felt very threatening, so they gave it to the person with the least seniority. My wife and I were blessed with a fourth son a few years later and we debated about trying one more time for a girl. Finally, in 1991, our daughter was born. By this time I had made the move out of academia and into private practice. We had moved to Oklahoma City, which was a much nicer city than Houston in which to raise a family. We had the usual challenges that went with raising children in the nineties and two-thousands. Katrina was a really beautiful girl. She was never snobbish - she was friends with everyone in her class and managed to meet kids her age from all over the country. She was extremely bright, outgoing and enjoyed performing in the theater in high school. Her four older brothers loved her and always seemed to get along with her (even though they didn't always get along with each other).
Everyone had made it through the teenage years before Katrina got sick, so at least there was a minimum of coexisting emotional turmoil during that time. Katrina had a breast mass when she was about fifteen which, on biopsy displayed some bizarre features that were hard to classify. Of course a biopsy is just a small core of tissue from a 14 gauge needle, so there wasn't a lot to process for special testing. Nevertheless, when the entire mass was removed, it turned out to be a fibroadenoma - a relatively common benign breast tumor and there was no sign of anything out of the ordinary. Whatever they hit with the biopsy needle, it was the only microscopic evidence of anything abnormal. Katrina was popular in high school (an experience that neither her mom nor I had had when we were that age). Everybody loved her - she was nice to everyone - especially those classmates who were insecure about themselves. She decided to go into nursing after high school - the only one of my children with any interest in medicine. She went to the University of Tulsa, about a hundred miles from home. She joined a sorority, Chi Omega, and was admired and loved by all her sorority sisters. Just as in high school, she was kind to everyone, including the girls who were insecure - she had empathy for everyone. When we went for parents day, we walked with her across campus to the football stadium. She stopped every fifty feet or so to introduce us to some of her friends. There were just a few kids that we passed on the way that she didn't seem to know. I had the privilege of going to "Dad's Day" during her freshman and sophomore years - some of my fondest memories of spending time with her.
While at college, she had noticed a mass in her breast in the same location as the previous one. She knew that fibroadenomas frequently recurred, so she wasn't too concerned about it. With her busy social calendar, she didn't see her doctor until it was several centimeters in size. Her doctor sent her for breast imaging right away and the radiologist called the breast surgeon immediately. She had it excised and we went with her to meet with the surgeon for a post-op visit. She told her that she had a phylloides tumor. She said these are almost always benign, but unfortunately hers was malignant. It's really hard to describe the feeling that immediately followed. It felt like the floor had fallen away and that the whole fabric of reality was unraveling. I have long understood that denial is an automatic response that takes over to protect us from being overwhelmed when we encounter some unacceptable aspect of reality - I guess that was what was going on - Nothing seemed real. No, I thought - I must have the cancer - that would be OK - she can't have cancer - Oh, God NO, please, this can't be real. This can't be real. This can't..... We went immediately to the pathology department to check out her slides.
The Komen "Race for the Cure" happened soon after her surgery and a few of her sorority sisters came to visit her the night before. When we went to the event the next day, about 25 more of them surprised her at the race.
A phylloides tumor arises from connective tissue in the breast (as opposed to carcinomas, which arise from the ducts or glands). An older term is cystosarcoma phylloides, since, like sarcomas, they arise from connective tissue - and look kind of like sarcomas under the microscope. Phylloides tumors (actually, they call them phyllodes tumors now, but when I went to medical school, they were spelled phylloides) make up less than 1% of all breast tumors - and malignant phylloides tumors make up a very small percentage of those. They are more common in women over forty, and rarely occur in twenty year olds. Overall, there are less than fifty cases in the US every year that are even remotely similar to what my daughter had.
Malignant phylloides tumors are made up of an epithelial component and a connective tissue component. In her case the sarcomatous part looked like a rhabdomyosarcoma under the microscope. This is a sarcoma that most commonly occurs in children - I had treated many children with rhabdomyosarcomas when I was in Houston, so I kind of knew how to do that. As it happened, two world renowned experts (a pediatric oncologist and a pathologist) on rhabdomyosarcomas (rhabdos for short) practiced at our local children's hospital, so I took her slides to the pathologist the next day. I looked at them through the teaching head of his microscope - most of the tissue looked like the familiar "rhabdo" but parts looked bizarre - I had never seen a malignant phylloides tumor before. I talked to the pediatric oncologist at length. He said there was no precedent for treating a malignant phylloides tumor with the combination chemotherapy one would use for a rhabdo, but he was going to an international conference the next week and he would ask the other experts there and get some opinions.
We got staging studies, including a PET scan, which were all negative - after removing her breast, she had no measurable evidence of cancer in her body. Her surgeon put in a port for chemotherapy. We took her to the Dana-Farber Cancer Center in Boston. We met with a surgeon, a radiation oncologist and a medical oncologist in a very efficient multidisciplinary clinic. They summarized their recommendations - a combination of drugs like those used for adult sarcomas - very toxic with a pretty low response rate. Katrina was otherwise healthy, though, and should be able to tolerate treatment well.I got a call from the rhabdo guru I mentioned above. He was back from his conference. Non of his colleagues who studied rhabdomyosarcomas had any better ideas about what to do. At least Katrina had the benefit of opinions from all the world's experts.
I took her to a classmate of mine from medical school - a very good medical oncologist in community practice. Soon, she started chemotherapy (the chemo was so toxic, it could only be given during admission to the hospital). She was admitted to the hospital for five days for each round of chemotherapy - once every month. I think she was able to repress much of her fear, since, after all, her daddy was a cancer expert and would make everything turn out OK. I am grateful she felt comforted by that - even though it was just her perception - I knew it was not reality.
I had learned a long time ago, that there's really very little that doctors can do for people. A trillion cells are each running countless biochemical processes in every human being. What we can influence is an infinitesimal fraction of what we can't. Whatever you chose to believe about a Higher Power in the Universe, there's certainly one making all this happen. Human beings have a tendency to just look at what we can control and assume that that's very close to everything. We live our lives in a constant state of denial. Until we face something in our life over which we are clearly powerless, it's easy to maintain that illusion. It's the same way with knowledge. We understand only a little, but if we continually focus on what we do know, and ignore what we don't, we can create the illusion that we "know everything". For example, we have learned a little about how the brain works - functional MRIs, EEGs, PET brain scanning, understanding the biochemical mechanisms of neurotransmitters, developing drugs that alter those neurotransmitters, etc. So many people think that just because we understand what we do, that a complete understanding of how our mind works is just around the corner. The reality is that today we are no closer to understanding why consciousness exists than we were a hundred years ago. Until humans get even remotely close to an explanation for the phenomenon of consciousness, I will continue to believe that there is a benevolent Higher Power running everything. I frequently tell people to throw out everything about religion that doesn't work for them and focus on developing a practical relationship with whatever they conceptualize their Higher Power to be - as long as it's consistent with their experience.
Katrina was being admitted for her fourth cycle of chemo when she showed her oncologist a lump that had popped up in her mastectomy scar. Her surgeon removed it (and took out her tissue expander at the same time) and it was indeed a recurrence of her cancer. Restaging once again showed no evidence of metastatic disease, so we stopped the (ineffective) chemotherapy and my partner gave her radiation therapy to her chest wall to sterilize any residual microscopic cancer cells remaining after surgery. Everything was looking good. She could have her breast reconstruction performed further down the line. She had almost no side effects from her radiation therapy and her hair started growing back. She went back to school.
She came back home for a follow-up PET/CT scan and we were once again looking forward to celebrating a good result. Katrina, her mom and I would always go into the radiology reading room as soon as her scan was done. The radiologist was delayed this time, so I pulled up the scan and started reviewing it. There was a hot spot on one of her thoracic vertebrae. I remember being baffled as I looked at it, wondering what could cause that sort of artifact - it wasn't there on her prior scan. The PET was hot, but the CT looked OK. When the radiologist came back, he was very kind and didn't just say something like "Well, this looks like cancer here." He could tell that I was involuntarily experiencing reflexive denial, so he simply suggested we do an MRI - just to clear up the "artifact" question. I watched the monitor as she had the MRI, my wife sitting beside me. The MRI was unmistakable - I felt the same way I had in her surgeon's office the day we first learned of her diagnosis. I told my wife - "It's cancer - it's metastatic - she's no longer curable." When Katrina got out of the scanner, she could tell by looking at us that it wasn't good news. I told her that there was cancer in her vertebra and that we would treat it with radiation therapy. She didn't ask if it meant that she was terminal and I didn't tell her. When my patients are ready to know the answers to the really big questions, they will ask me. I think it's unkind to take away someone's denial, just because I want them to "know the truth". Denial serves an essential survival function. It allows people to continue living from day to day, whereas knowing the truth might make them shut down and give up right then and there. When they are ready to move beyond denial, they will ask those questions. I showed my daughter the same compassion I would show one of my patients. She said, "Well, let me know when I have an appointment with Dr. P (my partner) - I'm going back to school tonight."
She had Stereotactic Ablative Radiation Therapy to the vertebra, which controlled the cancer for quite some time. A little while later, she developed metastatic disease in her femur. Fortunately, we knew a world class orthopedic oncologist who performed a hip replacement. She had several more courses of radiation therapy and a few more surgical procedures over the next year and a half, but no more chemo.
The usual treatment for a rare cancer is to have "best guess" chemotherapy and when that fails, there's always a "second line" chemo (it's second line because it has less chance of producing a response than the "first line" does). Then there's third line, etc. At least we knew enough to stop putting her through the discomfort of more chemotherapy. Her hair grew back. She finished her semester at school.
As time went on, she came to understand that she wasn't going to survive the cancer, but we rarely talked about it. She decided not to take any more classes in college, but wanted to keep living in an apartment in Tulsa, because that's where most all of her friends were. We took out a home equity loan so we could afford to do whatever she wanted. She remained active in her sorority.
She had a twenty-first birthday party in Tulsa and then we flew eighteen of her friends to Las Vegas with us and she had a twenty-first birthday party there as well.
We went to Europe for an extended vacation, which included a cruise around the Adriatic Sea - she met a young man on the cruise (from Scotland) with whom she fell in love. He felt the same way about her and came to America to visit for six weeks - they had no illusions about her life expectancy, but both of them enjoyed being together. She gave him an "out" due to her condition, but he didn't want to take it.
She loved the Oklahoma City Thunder Basketball team and we managed to get season tickets - she went to every home game including one that was only four days before she died.
One day she was driving through an intersection and was literally "hit by a Mack Truck" - it was a dump truck that had run a red light. It fractured the vertebra that had been treated with radiation - over the next few months the residual cancer grew through the cracks in the vertebral body and around her spinal cord necessitating one more operation to remove the cancer and stabilize her spine.
Toward the very end, her back pain required high doses of narcotics to control. She never wanted Hospice - she just wanted her family to take care of her. Her two brothers who lived out of town both came home for the last couple of months of her life, so she had her Mom, Dad and four brothers with her every day, not to mention almost daily visits from a host of friends.
Finally, the cancer filled so much of her lungs that she became hypoxic and lost consciousness for the last 36 hours of her life. When she stopped breathing, I tried to clear her airway and was tempted to ventilate her, but I realized that anything I did would only add minutes - or at most an hour to her life - still, even though she had been unconscious for over a day, it was hard to let go - it made me realize how hard it must be to "pull the plug" on a loved one.
We cried, we prayed, we thanked our Higher Power for the twenty one and a half years that we got to have her with us.
We had a funeral in Oklahoma City and a Memorial Service in Tulsa. All together, more than a thousand people came to the services - a testament to how many friends she had (and how many friends we are blessed to have).
About a year later, we went to Scottland to visit Mark, Katrina's Scottish boyfriend, and his family, whom we had gotten to know via the internet. We sprinkled some of her ashes at the origin of the River Dee, before it winds its way down through the Scottish countryside to reach the North Sea at Aberdeen - a place Katrina would have wanted to visit if there had only been time. There will always be a hole in my soul that will never again be completely filled, but today it is mostly filled with fond memories of our time together.
The stages leading to Acceptance include Denial, Anger, Bargaining and Depression.
I've come to understand how denial can take over and protect my psyche from being overwhelmed by realities that are too terrible to experience at a conscious level. Denial is like a parachute that slows my decent so that I don't suddenly slam into unpleasant truths.
I experienced relatively little anger on my journey toward accepting my daughter's death. I think gratitude is the best antidote for self pity (I think that self pity and anger are two sides of the same coin), and I was fortunate to be able to feel grateful every day that I got to spend with Katrina - and now - everyday that I get to spend with all my other loved ones. I don't think that feeling grateful is something I can will myself to do - like all my other feelings, it is a gift. Nevertheless, it seems to displace anger, just as water displaces oil.
I have seen thousands of cancer patients and their families spend much of their remaining precious time "Bargaining" for a cure - another round of chemo, an expensive new drug, a clinical trial (with little chance of success) or going to Mexico to take laetrile - motivated by their fear of death, they continue to grasp at straws, even though fighting the inevitable saps their strength and robs them of the enjoyment they might have today. I am grateful to all those who've demonstrated this behavior to me, so I didn't have to waste my time (and my family's time) "bargaining". Instead, we had that much more time to spend enjoying the wonderful gift of each day. It was reasonable to try the chemotherapy, but when we saw that it wasn't working, we were able to move on.
Depression (or at least profound sadness) is an unavoidable part of the journey toward acceptance. I think this is what I feel while the chemicals in my brain re-equilibrate - while the synaptic connections reorganize - while the changes occur that allow me to get to a state of Acceptance - the state where I'm OK with what had previously been an unacceptable fact of reality.
Acceptance is the answer to all my problems today. I believe that nothing happens in this universe by mistake. "When I am disturbed, it is because I find some person, place, thing or situation - some fact of my life unacceptable to me, and I can find no serenity until I accept that person, place, thing or situation as being exactly the way it is supposed to be at this moment." I don't waste my time arguing with those who wish to believe that "if I like something it must be God's will and if I don't like it, it must not be God's will" - or those who wish to believe that "God takes care of the big things, but leaves the little things to chance". Today, my Higher Power is everything - and I choose to believe that every sub atomic particle, every quantum packet of energy is in exactly the state it's supposed to be in at this instant. Of course, what I believe about these things is beyond the reach of investigation by the scientific method and I don't expect anyone to believe anything that can't be scientifically validated. This is just what I believe - and if it works for you too, please use it, but regardless, I hope you find some philosophy of life - some belief system - that gives you comfort when life brings you experiences that are so terrible, they seem impossible to survive.
This is a tough question to answer as it brings all the pain I try to push back (he's just on a long vacation; he's busy with work, etc., AKA denial) with as much force as I can muster until I'm lying in bed alone with my thoughts, trying to hold on to every detail I can about him. The fear of forgetting his voice one day drives me wild.
I had my firstborn son, Kenneth Wayne III, when I was 19 years old. I loved him before I laid eyes on him. I couldn't wait to meet him and when I heard his first breath, I instantly realized the meaning of unconditional love. I knew right then & there that nothing would ever change this deep love I felt. I was a child myself at the time so I refer to his upbringing as he and I growing up together in a sense. I learned the meaning of maturity, responsibility, selflessness, compassion, empathy, protection and many more traits. In turn, I taught him the same. It was he and I together during the day until his dad joined in after work. We explored nature, played hide-n-seek, went to the beach, made sand castles, watched Sesame Street, Disney movies, danced, read books, sang songs and listened to lots of rock-n-roll music.
Two and a half years later his brother was born. Ken's first words when he laid eyes on him were "can you put him back in there now"?! Of course that changed immediately. Not only did they form a bond as brothers, they were the very best of friends! It was awesome watching them grow up together. I never imagined loving someone as much as I loved Kenny. Of course, my love for my younger child was also instantaneous (as such when my daughter was born). It was the boys and I together during the weekday and dad taking over when he got home and joined in the fun.
Those years were really some of the best of my life. Being a mommy was what I wanted and here I was, at 23, with two incredible boys. I'm sure we had our ups and downs back then, but looking back now, the stresses of those days seem rather silly. Kenny was born with a drive to succeed. He had an extraordinary gift of gab, having long detailed conversations with adults starting at the age of 4. People were fascinated by his vast vocabulary and his drive to learn all he could. His questions were numerous (f.g., at the beach, "how many grains of sand do you think are here"?). He was a sponge, soaking up each reply we gave. It was obvious he would listen intently to your answer. He was incredibly loving, very respectful, silly and funny, spontaneous, athletic and extremely ambitious in his academic pursuits.
Beginning in elementary school, he was a 2x Spelling Bee Champion, won 1st place in the Greater San Diego Science Fair in physics, SCHS (highschool) Science Olympiad Grand Champion and made the Principle's Honor Roll for 16 consecutive quarters. He achieved various other awards in academics along with awards for baseball, wrestling, and competitive pingpong. He graduated from high school as Salutatorian in 2007. In his senior year, he and his dad worked endless hours on his college applications. Their hard work paid off when Ken was accepted to each college he applied (5 UC schools). He chose USC for their world class business school, the Marshall School of Business, and entered the prestigious Lloyd Grief Center of Entrepreneurial Studies. He joined Delta Chi his first year and held positions on their Board. He befriended all walks of life and ended college with numerous close friendships. Ken was looked to for advice in many different areas and respected everyone he came in contact with. He appreciated the beauty of life and was positive in his surroundings. Everyone Ken met considered him their best friend. He lived more in his short 23 years than most do in a lifetime. He traveled to Hong Kong and Greece, fished in Mexico, attended countless music festivals/concerts and academic debates, never missing out on anything he wanted to do. He came home often to spend time with his brother and the rest of his family, always stopping to visit his old friends from SD.
Obviously to try and answer this question, I needed to give a bit of background first. I thought about how to answer a question of this nature and found that from my own personal experience, I don't believe words could truly describe this pain, horror, loss, and anxiousness I feel without my boy. I can identify with the pain and sorrow in each answer written here. I believe one can only know the pain of losing a child if you've lost a child yourself. How could I possibly put into words the difficulty of life without him, the breathlessness felt each morning I wake up knowing he's gone, the guilt I feel for not being able to save my firstborn child, my Lil buddy, one of my 3 favorite people in this world? How does one go about life without their child?
After the loss, I didn't leave my bedroom for nearly six months. When I did it was because I had spoken to a man that lost his daughter and had written a book about the loss and also opened a center for people grieving the loss of their child. He graciously invited me to his home to speak with me. We sat on his veranda and I asked him how he was able to go on with life after his loss. He looked at me and without hesitation said "Rebecca you're screwed and that's just the way it's going to be. You have to learn how to deal with the rest of your life knowing this. At first his honesty was shocking. However as the years have gone on, I realize his words that day struck a chord. I'd much rather hear honesty than the other stupid things I've heard "He's in a better place"; no, the best place is here living life with his family, "God needed him back"; how selfish of God in my eyes, etc. For me, to attempt to explain the emotions of a mom and/or dad when they lose their child is way too complicated. Words like sadness, despondency, and misery don't scratch the surface of emotions. I'm left wondering how to console my other two children when I can't understand nor accept this grief myself.
The instant the two people from the Coroner's office knocked at my door, the life I had was over. No longer would I be the same person. There's a distinct difference between who I was before his loss and who I am now. When I reached the top of the stairs and saw them in my living room, everything about me ceased to exist. The stresses of the day before no longer mattered. Had he been in an accident? No. Was he murdered? No. Did he have a hereditary disease unknown to us? No. Suicide? No. We had to wait four months for the autopsy conclusion. What a nightmare not knowing. Why I didn't immediately get in my car and drive the 3 hours up north disturbs me to this day. Why we asked my siblings and father to go up and clean out his room of his belongings makes me very angry at myself. What was I thinking not going myself? Was I in shock? Denial? The guilt is overpowering. No matter how many people try and persuade me that his passing is not my fault, somehow it still is. I'm supposed to protect my children. I'm the mom! The love I have for my children and life itself is buried under a heavy load called GRIEF.
The comments I've heard about 'having two other children to live for, Kenny wouldn't want me to live like this', are well intended yet don't have an effect and can't penetrate into my numb mind. The endless nights of terror imagining the what-ifs: what if this happens to Nate or Kay? What if I had just gone up to his house that day to surprise him? Why hadn't I gone to him after finding out? What if he never met the punk that was with him the evening before? The thoughts have left me an insomniac. I'm more comfortable in my own surroundings with pictures and memories of a different time. I try as best as I can to hide my sorrow from my other children and family. It's all I can think of. I'd never want my kids to think they aren't just as important. When they come tell me about their accomplishments, I'm proud. The moment of happiness is followed by a gut wrenching feeling, 'why isn't Ken here to share and enjoy these moments'? I'm left pulled into different emotions. If I don't show how proud I am, I'm a crap mom. If I smile and let my happiness show for my other children, I'm worthless to Ken because he'd think I wasn't devastated about his loss. Does it make sense? Nothing makes any sense in tragedy. What would he feel if he could see me smiling? I still don't know the details of the night my son lost his life. I know what caused his passing but the roommates he lived with told us they were 'too shaken up' to speak of any details. While I can only imagine the panic and despair they felt upon finding him, can and do they imagine the anxiety we as parents feel not knowing? Will they ever tell me? Each night I try and piece together his last day and night but I'm only left with a story I created. I created this wonderful human in my body, witnessed his first breath but I'm not worthy enough to tell me about his last moments? I'll never know what he was thinking or the why's that surrounded this tragedy.
It was 3 years on July 6, 2015. Some say time heals but that hasn't been true for me. The first and second year were shock and denial. When January 1st came this year all I could think was 'UH OH' here we go again. I believe that's when I finally realized he wasn't going to come home. How I long for that denial to come back and protect my mind. Perhaps in time I'll have learned to incorporate the pain into life. I don't see the light at the end of this tunnel. Maybe this year was the year of realization. I don't want another year of birthdays, holidays, anniversary dates, and celebrations without my firstborn child. Losing your child leaves a hole in your very soul that cannot be filled. It leaves you numb, breathless, anxious, sobbing, apprehensive, angry, bitter, hateful and many other emotions tied up in the word 'bereavement'.
Getting back to an answer to this question (finally) here it is: I pray that the reader never has to personally know an answer to this question and if you are on this same path, I'm so very sorry that you have to live with this pain. I wish for you peace on your journey.
I married for the second time at 38. I met my husband on New Year's Day and knew that I loved him, really loved him about three weeks in. Two months into our relationship on Wednesday, March 9, I discovered I was pregnant. I was flabbergasted, we had been so careful, I thought. I went out and bought him a bottle of bourbon, called him and asked him to come right over. I had no idea what he would say. He came to my small apartment and sat down at my kitchen table, gazing across at me. I poured him a shot and said, "I'm pregnant." He said, "Well, than I guess we'll just have to get married." Which we did, two days later in my sister's living room with 30 or so people there. Our bridal party consisted of my neices and nephews, all of whom were under the age of six.
We were ridiculously happy. We found out we were having a girl and named her Mariko Kathryn. My husband comes from a family of four boys and was beside himself. We planned and dreamed and talked about what she would be like, what she would look like (he is Japanese-American, I am Scots-Irish American). Would she be fair?
What color would her hair be? Could she possibly turn out to be blonde like all of my cousins and two siblings? And then, at 23 weeks, I started to bleed. I was immediately placed on bed rest and I remember watching all of the episodes of Prime Suspect and falling in love with Helen Mirren. I lay there day after day dreaming of my baby, picturing her, planning our future together. My husband made me crab cakes and ice cream sodas and delectable salads. We lay in bed when he came home from work holding hands and watching horrified as OJ Simpson in his white SUV wound and darted through the crowded California expressway. Not once did it occur to us that this would end badly. I had had a checkered life, filled with trauma and loss and I was so very happy for the first time in such a long time. My husband, my child, our family. I couldn't believe my good luck. And then, at 27 weeks, my water broke.
Twenty-one years ago there was no attempt to save a baby born so early. We barely made it to the hospital where she was born. My husband sat beside me clutching my hand and said, over and over, "This is really bad, this is really bad." He leaned over and kissed my mouth hard, tears streaming down his face. We held her, our tiny delicate girl, all two and half pounds of her, whispering her name, telling her how much we loved her until she died in my arms a few hours later. I was absolutely devastated. This was NOT supposed to happen. This was the last decade of the twentieth century for God's sake. But it did happen, and as we grieved our daughter's loss we found others who had gone through the same thing, who reached out to us and did their best to comfort and hold us.
I was very lucky to have another child. So bittersweet: he was born on what should have been her due date, had she made it, exactly one year later.
I have never gotten over her loss; every year on the anniversary of her birth and death I am blindsided by fresh grief. I picture her as she might have looked as a young woman, I wonder who she would have become as a person. I wish so much that I had gotten to keep her.
The house is quieter. The rooms are emptier. The corridors have lost their laughter. The home has lost its soul. And the most unnerving, desolate thing in the world, is to be following along behind the hearse carrying the small white coffin of a piece of your heart and soul.
We hadn't measured her height for a while, life gets too busy that way, but when she died, I learned she was 4 feet tall, because she fit perfectly in a small white four-foot long coffin.
After the sudden death of our 4 year old daughter last December, the first thing that changed was a complete loss in confidence as a parent. How can we be fit to be parents when we don't even know why she was gone, and how to prevent it from happening again to the precious few we have left?
The second thing was to shut everyone except my immediate family out. I didn't want to hear or feel their sympathies, I didn't want to relive my grief every time someone mentioned her name. I was more than capable of torturing myself. I asked that her funeral only be attended by us and our parents and siblings, and fortunately that wish was mostly respected. I wanted our last few moments with her (selfishly, I admit) to be saved for only those of us who would have died to take her place.
I was fearless from the moment she was born - I had to be in order to be her protector. But after her death, I was afraid of everything, most of all being alone with my own thoughts. The nights are the worse, when there is no human noise to block out the sound of her voice and the flashing of her memory. And so the lights and the radio were always on in every room of the house.
The memories come in waves, and I can't tell you which is more painful - the ones of her alive, or the ones from the moment we first discovered her unconscious on the floor. I remember wailing to my husband one day, about the memories of her growing up, "But what do I do with all these memories now?"
All her life, we thought about the future - how to find a good school that would teach her to be curious and creative, nurture her artist soul, what sort of boy she'd bring home one day and what her father would say if the boy had a tattoo, how she would deal with the mean girls in school, whether she would look after her younger sister or vice versa (they are, or were, only 19mths apart in age), and how funny it would be to still hold her hand and call her "Baby" in front of all her friends when she was 23.
And then one morning, there was no more future. Just an empty, endlessly silent hole, that now fell unfairly upon a 2.5 year old child to fill. But fill it she did, and now she has another sibling to help fill it as well.
So in summation, what is it like to lose a child? It is a grief that never goes away, a grief that starts as a searing, screaming pain but with time you learn to live with, like an obnoxious neighbor.
From the first moment you discover that you are pregnant, you picture your child- I think they call it 'expecting' for that reason. You begin to 'expect' the happiness that you will have, the things that you loved doing with your own parents as a child will be yours to enjoy with a child of your own.
Playing in the sand on the beach, making daisy chains, eating ice cream, riding a bicycle on an English summers day. Way in the future perhaps, watching them walk down the aisle - happy, your job done.
For someone like me, adopted with no 'bloodties', it was to be a beginning. A story of my own.
But, sometimes, things don't work out the way they should, sometimes we don't get what we want, or even perhaps what we need.
I have always talked quite openly about my child - Elizabeth Frances who was born 'asleep' on the 8th April. It is the only way that 'sometimes' I can make her feel 'real'.
I know that people will think that losing her isn't the same as losing a child you have spent time with, a child you have held in your arms and rocked as they slept. I can't argue with that, I didn't do those things.
I never heard her cry, or laugh. I didn't get to read to her or dig in the sand or run from the waves. But she was real to me.
And on the day that she was born, I heard her laugh in my mind and I saw her beautiful smile, and my heart broke in two because the 'expectation' that I had of this most precious thing had been broken into a million pieces.
What is it like to lose a child?
It is impossible to describe. I could tell you about the tears I cried, about the anger I felt, about how I railed at the 'unfairness' of losing her, but it isn't just that.
Losing a child makes you different from other people. Part of the 'hope' I had was gone.
There isn't a day when I don't think about her, in that sense, I haven't really lost her have I? But I'm not the same person that I was and that is what it's like to lose a child, part of you is gone forever and there is nothing you can do about it.
I lost my 16 year old son, Kyle Matthew McManus in April 2007. He was in perfect health, and having a normal day with friends and girlfriend. It was the last day of the Easter holidays and, as a teacher, I was home too.
He popped back home to grab some snacks to take to a friends house, and I hugged him, but he wouldn't let go until I gave him a kiss (unusual I know for a 16yr old boy); then he left to walk to his friends house, 15 minutes away.
After less than 30 mins of him leaving, I received a call to say he wasn't well. I drove to collect him and he was visibly unwell, and said "Mum, I'm dying'. I joked with his friends family that men always over exaggerate and drove the short journey to the local doctors.
In this short time he was vomiting and on arrival I had to get help as he could no longer stand or walk unaided. I still never thought 'the worst'. However within minutes of lying on the examination bed, he was slurring words and the last thing he said was "I can't hear you mum!", to which I replied, "Have a short rest son, we'll get you sorted soon".
I was constantly holding his hand and stroking his hair and felt his heart begin to beat really fast, so called the nurse back in. That's when it became a bit of a blur. The doctor began CPR, and following the second or third rescue breath, the fluid that had started to fill his lungs, was literally pouring out and I just screamed his name, asking him to hold on.
The paramedics arrived and took over and we (my husband had arrived a few minutes previous), were ushered out. By this time, I knew it was too late, I knew he had gone. The ambulance took him to hospital, but no blue lights, and my husband and I drove silently to meet them. The doctors and nurses, worked on him for over an hour, but I knew he had gone.
My husband was screaming and crying, but I sat silently, because I knew. Kyle was pronounced dead at 7.16pm from a brain hemorrhage. I still sat, in a complete sense of shock and disbelief, blaming his death on a monetary prize I won (on a tv gameshow); I had felt uneasy when I won, convinced that karma would throw something bad my way. I had never, ever believed in anything like that, but was adamant that this was the reason!
The funeral was a blur, as we're the first six months afterwards. Kyle was an only child, and the gaping hole he left behind was incredibly hard to fill. We both returned to work, but found social situations incredibly painful; so ended up giving up our jobs to founder a charity in his memory.
We both deal with the overwhelming grief in very different ways, and know that this feeling of incredibly devastating pain won't go away, despite the many positives the charity gives. We have been told many things, by many people, such as 'teachers rarely return to work', which I didn't believe until it happened. I also had an awful phone call with 'The Compassionate Friends' who told me that I would never be able to see my son marry, or have grand children; which sent me into a deep depression!
I take medication for PTSD and suffer from numerous auto-immune diseases which I know are all stress related. Kyle would be 21 this month, and both my husband and I are starting the annual struggle to continue normally, and not have a mental breakdown. 5 years in, and it gets harder and harder.
It is the hardest thing in the world, it leaves a pain that lingers forever. I have buried two sons. I never have a day that goes by without something triggering the pain. I manage to carry on, to live, love and even find happiness in my life, but deep in my soul there lingers an ache and loss that will never go away. It may recede, but eventually something will trigger the feelings of loss and pain.
It helps to talk about what happened to my two boys. But I find that most people can't deal with hearing it, and have no idea how to respond. What I need is just people to acknowledge my loss and that my two boys did live and are not forgotten. I don't push it on people but if the subject comes up, I take the opportunity to share my experience, which helps me.
Somebody once told me that losing a child is wholly contrary to nature, since usually the older people go first.
When I was a lot younger, our 6 weeks old baby daughter had an ear infection, after consulting with our friend the pediatrician we together decided not to do anything about it, especially since in a very recent paper it had been demonstrated that with or without antibiotics the otitis (ear infection) would heal in about the same time, so no need to prescribe antibiotics for that. Pus was coming out of the ear, so we though the drainage was OK.
After two more days when coming home from the hospital (where I among other things was supervising the adult intensive care unit) I noticed her to be quite ill, lying in classical opistotonus with her back arched back, so the diagnosis of a meningitis was made. Our friend saw her in our hospital where I took her to, a lumbar puncture confirmed the diagnosis, the next day she was transfered to an academic children's intensive care unit, where she went into full blown septic shock, needing fluids, pressor-amines and mechanical ventilation. The staff and child intensivist were great, giving us all the information and leeway we needed, unfortunately I had to keep on working, since my partner on the job was on vacation, so in the morning I did, and in the afternoon went to the academic center to see our daughter. When after about 10 days nothing good happened, I asked her intensivist how to proceed further, so he stopped the sedatives (at that time we still believed in keeping the critically ill in a coma to spare the brain) and after a day made an EEG, and another one the next day, both of them were flat, so it was clear she was brain dead. I already knew beforehand that we were most likely to lose her.
In the midst of all the emotions I felt we shouldn't prolong everyone's agony, so instead of accepting her intensivist's offer to wait another night, we decided to stop the treatment the moment we knew she was beyond hope, I disconnected the breathing tube myself, took her on our lap, and we waited many, many hours until everything stopped. It was terrible, after that we all were in a daze. During her illness her brother who at that time was 2,5 years old was present most of the time, since I sincerely believe that he as a part of our family should be present too. He now still remembers some fragments from that time.
Afterwards we asked for a postmortem, which showed nothing new. Her intensivist told us he couldn't bring himself to ask us for permission to do a postmortem, and was rather surprised by my request. I on the other hand wanted to know everything we could learn about her illness, in the spirit of my normal line of work, so of course I would like to know so wanted to have it done.Like anybody else I was looking if we had done something wrong.
After that I took a day off to arrange for her cremation and such practical matters, but started working two days after her death, I think that kept me sane, and the flow of work going, since my partner hadn't returned from her vacation.
We kept it very much to our selves, but when the day of her cremation came (that was the second day I was absent from work), a lot of colleagues and co-workers were there for us, which moved us very deeply. After some weeks we had to do something about all her things, which we did while in tears most of the time, but it gave us some closure.During her illness and afterwards, I often took a step back from myself and looked at which stage of grief I was in, very weird.
We don't forget her, but time makes it possible to live with the loss, speak about it without choking up or getting tears in our eyes. We have a photograph of her in our living room.Each year on her birthday, and the day she died, my wife goes to a small chapel, at a place of pilgrimage, to pray, I come with her although no believer myself.
After that if possible I avoided treating (very sick) children, especially since our intensive care unit is not for children. I do what is needed, when somebody comes to take over I withdraw and feel unwell for some time. After all, we docs are human too.
On the other hand, one must remain practical, so I kept treating our very asthmatic son myself since both the pediatricians and family doctor were not comfortable with treating the asthma according to the latest insights, and I was, since I treated a lot of grown ups with asthma. No doubting myself if I would make a mistake and cause big harm to our children. They are both quite well now, although I did initially miss a broken but not dislocated wrist after a fall in both of them when they were still young.
In the aftermath I felt I needed some practical advice, so talked a lot with a colleague who's 7 year old son was killed in a car accident right in front of his eyes some years before, I noticed he too worked very hard, maybe also as a way to cope with his loss, and with a good friend, a respected family doctor of my age, who told me if we wanted a family with two children, not to wait too long since they needed to be not so far apart in years or else wouldn't connect, so contrary to our first thoughts after a bit less than a year our second daughter was born. We took great care not to let her become the surrogate for our first daughter. Our son promised himself and us that he would raise his new little sister and teach her all he knew, which he indeed did. A very special relationship.
I think this experience has made me a better doctor, at least that is what I hope, since I empathize better with my patients and their family, while still retaining my very practical and business like way of doing things.
Did the fact that I as a physician was doing intensive care at that moment help? It did, since I better understood what the situation was and what we could or could not achieve, so could make sound decisions uncluttered by emotions which at times can make it worse.
Almost 34 years after all this took place last week we again had dinner together with our friend, the pediatrician, who saw and admitted our daughter that fateful first night, and his wife. When we discussed how life had treated us, and I said in spite of all I felt we had had quite a good life, having two healthy children, being in reasonable health etc., he got emotional, and after excusing himself, him not knowing if it was an opportune moment to discuss it, told us that during all those past years he felt so guilty not having been able to save our little baby girl, even to the point of willing to accept and understand should we not want to know him anymore, while we only felt gratitude for all he had done for our baby girl. I told him that I as a (former intensive care) doc knew that we cant win them all, my wife and I assured him of our positive feelings, our gratitude, about his involvement, and hoped he could leave this all behind him, like we for the most part had done.
Some of this material has been edited for clarity.
When you're a kid most adults will tell you one thing or another is "cool" and "fun." Odds are you're too young to form any kind of opinion on the matter one way or another. You're a kid, right? You don't know what you're eating for breakfast. However, when you get older and form that larger worldview, you realize that yeah, maybe that one time when you were a kid actually wasn't fun.
These are those stories.