Nothing in this world approaches the horror of losing a child. It doesn't matter how old the child was or how they go, the loss for the parents leaves a hole in their life and in their heart that never fills back up. For parents that suffer this loss, there is life before and life after, and it will forever be the moment everything changed.
In these heartbreaking stories, parents pour their hearts out, through the pain, through the heartache. If you've never had or lost a child you'll never truly understand, but at least with these testimonials, you can begin to understand how much compassion they need.
With A Family Curse Of Twins, The Emotions Of It All Come Out
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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.
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. 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. 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.
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, every birthday.
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.’ 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.’
About six 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. 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 delivered a healthy, full-term baby girl via c-section. 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 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.”
A Fatal Diagnosis
“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.
After two more days, when coming home from work at the hospital, I noticed her to be quite ill, lying in classical opisthotonus with her back arched, 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 transferred to an academic children’s intensive care unit, where she went into full blown septic shock, needing fluids and mechanical ventilation. 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 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.
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.
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.
After that, if possible, I avoided treating (very sick) children. I do what is needed but when somebody comes to take over, I withdraw and feel unwell for some time. After all, we docs are human too.
In the aftermath, I felt I needed some practical advice, so I 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. He 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. 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.
Almost 34 years after all this took place, we 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, told us that during all those past years, he felt so guilty not having been able to save our little baby girl. I told him that I, as a (former intensive care) doc, knew that we can’t 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.”
It Doesn’t Get Easier
“I lost my 16-year-old son in April 2007. He was in perfect health and having a normal day with friends and his 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 friend’s house, and I hugged him, then he left to walk to his friend’s house, 15 minutes away.
After less than 30 minutes of him leaving, I received a call saying he wasn’t well. I drove to collect him and he was visibly unwell, and he said, ‘Mom, I’m dying.’ I joked with his friend’s 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 mom,’ 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 I 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 the 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. He was pronounced dead at 7:16 pm from a brain hemorrhage. I still sat, in a complete sense of shock and disbelief, blaming his death on a monetary prize I had won a TV game show; 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 were the first six months afterward. He 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 we ended up giving up our jobs to create 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.
I take medication for PTSD and suffer from numerous auto-immune diseases, which I know are all stress related. He 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. Five years in, and it gets harder and harder.”
A Hole In His Heart
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“It feels unnatural because you expect inside that you’ll die before them, even though you know the possibility exists that they could die before you do – you just don’t think it will happen to you.
I can’t say that I went through any real sense of guilt that I had failed him in some way or contributed to his overdosing at the age of 27. That’s not to say that I didn’t wonder about that sometimes, and intellectually I know there are always things we can look back on in hindsight and wish we would have done differently.
The hardest thing for me is that I have had, and I suspect I always will have, moments when the reality that he’s no longer here hits me with the same deep pain and loss I felt when the police chaplain broke the news to us. It literally feels like I have a hole in my heart, that a most precious part of my soul was ripped away cruelly without warning.
I lost my first-born son, I lost my best friend, I lost his very bright future, I lost the only true link to my family name, but most of all, I lost an invaluable part of myself that is truly irreplaceable. I’m not left with a place of emptiness, I’m left with a place that was once full of treasured moments that are now painful reminders at worst, and poignant recollections at best when I can smile at a memory.
I’m not bitter or angry in any way, and I don’t feel cheated, either. I’m truly grateful for the time I had with him, and I accept that the pain I feel now is worth every bit of that time and every memory I have of him.
But the most poignant, and ironic, part of this whole thing is that I’ve suffered with depression, anxiety, panic attacks, OCD, and who knows what else, for over 30 years. My suffering held me back from life, and it really bothered my son because he knew my potential, and that frustrated him to no end. Maybe it was some form of shock therapy, or maybe it was the fact that I was moved so far out of my comfort zone that I knew there was no going back, but something else changed in me the day he died.
I started to heal from all of those severe mental health issues, and I found myself able to do things and enjoy life in ways I never thought I’d experience. I eventually went back to school and got my masters in social work and became a clinical mental health therapist. I find myself in a place far better than anything I could ever have imagined, free of those conditions, and I often wish he were alive to enjoy that with me and see for himself that his belief in me was not misplaced.”
The Cancer Struck Hard And Fast
“I lost my only child on September 9th of this year (2018). It happened very quickly.
In mid-August, at the age of 18, and with no prior health issues, she developed some strange bruising. She had a blood test done to see what might be wrong.
On August 22nd, the day after the blood test – she was admitted for a second test to be certain. She was diagnosed with Acute Lymphoblastic Leukemia.
We were deeply rattled and terrified. We had no real idea about leukemia, other than that it was often fatal and one of the most serious things a person could have.
She started intensive chemotherapy 2 days after her diagnosis. We learned from the doctors and began educating ourselves. We were at her side constantly. We came to understand that treatment of ALL had come a long way, and even with her very rare form of it, that her long-range survival odds were 90%.
We gradually began to allow ourselves to take comfort that she would probably be OK. We knew that she would be in for a long haul, and have her life on hold, but that we would do anything and everything for her to help her get through it.
A couple of weeks into her first round of treatment, she had a really bad day. There was a lot of pain everywhere in her body – to the point that she could barely stand or move. Everything hurt, badly.
I’m going to skip some things because they are too painful and personal. It turned out to be an unexpected complication and she went into a cardiac arrest.
She was brought back on life support, and we spent two days in stasis not knowing if she would revive or not (or what damage might have occurred). On the third day, we knew she would never return. She had experienced brain death.
We allowed time for all to say goodbye, and surrounded her while she passed.
She was the most incredible person we all knew. She was a kind, compassionate, funny, dedicated and amazing young woman. She had graduated high school with honors, and was just a week away from relocating to her chosen university residence where she was to study Environmental Resource Management.
She absolutely loved kids and they loved her. She also loved animals and the environment. She volunteered at a wildlife rehabilitation center that cared for sick, orphaned, and injured animals and released them when they were ready.
She loved the water, and had changed from being a diver to being a competitive rower. She would be up at 4 am every day to be on the water, practicing.
She had a permanent smile on her face.
We had all felt so victorious and proud of her for how she had turned out. I couldn’t wait to watch her start her new life at university, and I was grateful every day for her.
When she became sick, it felt very surreal – this shouldn’t be, can’t be, happening. How is this happening? It doesn’t make any sense. Look at her, look at everything she’s done and who she is and what she’s going to be. She’s perfectly healthy! How can this be real?
That was the first lightning strike.
The second lightning strike completely threw my entire sense of reality upside down. I have never experienced anguish until then.
The day that she passed – I had been looking forward to driving up and spending the day with her in her new city, having her show me around – just spending time and having fun. Three weeks earlier that had been the plan. There I was, though, living in an incomprehensible universe where her life support was being turned off.
After the initial intense grieving, I was actually feeling almost normal; although sad and defeated. I was worried about myself that something was wrong with me – that I should be completely devastated. She was all I could think about but I was still functioning, and seemed to be doing OK.
I think now it’s because the entire month up until the services had been so all-consuming with such an intense grief that I was able to actually focus again somehow after it was over. I think the shock of it all protected me. The unbelievable community support caught us as well – we fell into 1,000 prepared arms.
Today it is been just under a month since she’s passed. The deep pain is setting in. I know that there’s nothing wrong with me and I’m more injured than I can take at one time. I’ll see how it goes but I have made some arrangements for counseling. I’m not the person I was a month ago and I don’t think I ever will be again. I think I will be ok, but I know that my life will forever be divided to before and after. Nothing makes sense in the same way as it did before, and what I think is important is very different.
We had joined a fundraiser for the Leukemia & Lymphoma Society (Light the Night) while she was still just sick. We have thrown ourselves into that, and have more plans to carry her spirit forward.”
He Ignored His Health And Paid The Ultimate Price
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“My oldest son passed away last week a month shy of his 33rd birthday. Today I brought home his ashes. Out of curiosity, I weighed his remains. They weighed about 8 lbs 9 oz. Thirty-three years ago, my wife and I brought home another bundle weighing just a little less — 8 lbs 3 oz. I remember well lying on the bed with my son in my arms. I told him about all the great adventures the world had in store for him — the great places he would visit, the great food he would eat, the great books he would read and the great movies he would watch. I remember telling him he would love the movie Casablanca, that it had the best ending ever. Any parent will tell you that they are born again with the birth of a child. He was not just a new life, he was new life for me.
Years pass, my son grows. He becomes a bright student, he becomes an athlete, he becomes an Eagle Scout, he becomes a great musician — instrumental, vocal jazz, arranging. He becomes a great friend, he is generous and kind and honest, but there are seeds of problems that will plague him soon.
At 18, while preparing for an operation to repair a bone spur in his foot, the nurse discovers that his blood sugars are high. Within days he is diagnosed with Type II Diabetes. The diabetes begins to take a heavy toll on him. He doesn’t take adequate control of his blood sugars and, in fact, compounds his problems with bad lifestyle choices. By the time he is 30, he has had one foot amputated, is legally blind, and he has had a heart attack.
He persists, more or less, in this condition until a year ago when his kidneys begin to fail. Over the last year, he is in and out of the hospital. He begins dialysis and he gets approved for a kidney transplant from his mother. A week before a final doctor’s appointment to set a date for the transplant, his potassium goes too high and shuts off his heart. Between one heart beat and the next, he is gone.
I could tell you about the day of his death — it was awful. I could tell you about the day of his viewing — it was beautiful. I have had ups and downs, but thankfully the average time between tears is going up.
It is hard to think of a life as being over and done with. I am grateful for the life that we shared, but I feel that we were cheated out of many years and many experiences and there is nothing anyone can do to change that.
I will share our final encounter, which is bittersweet to me. He called me on Sunday night. Normally I would call him, so if he called me, it was because he needed a ride or some kind of help. Not this time.
We talked about his health, we talked about his need to get a referral to a gastroenterologist to deal with nausea and abdominal pain, we talked about his desire to go with us the next time we visited his brother in Los Angeles. We made plans to meet for lunch on Wednesday.
We often end a call with ‘I love you, bye.’ This call seemed different, more significant and weighty somehow. When it was time to say goodbye, I said, with real feeling, ‘I love you, son.’ He answered, ‘I love you, Dad.’ And those were the last words either of us spoke to the other. A few hours later, he was gone.
How do I feel? As sad as I have ever been. I have ended a few emails saying, ‘I have to go drink some water now so that I can make some more tears.’ In fact, I think I need a glass of water now. If I had known 33 years ago that I would be saying goodbye to that 8 lb 3 oz bundle of new life so soon, would I do it all again? In a heartbeat. His life had — and has — great meaning. A friend shared a great Winnie-the-Pooh quote at his viewing: ‘How lucky I am to have something that makes saying goodbye so hard.'”
You Can Find Your Way Back
“We lost our son over 10 years ago. He was 20 years old when he died. He was always a wonderful son and brother to our other child, an older sister. He was an exceptional student, had won a prestigious scholarship to a great university and was home for the first summer break. As soon as he turned 18, he had become a volunteer firefighter in our small semi-rural town.
He died in a tragically stupid water rescue training accident in early June 2005. He was ejected from the boat in an unplanned stupid cowboy move driven more by testosterone of the driver than skill or logic, struck on the head by the prop and died quickly and without lingering.
The official inquiry highlighted badly equipped, badly trained and badly planned exercise. A tightly knit waterfront community of 5,200 went from idyllic pastoral life to TV trucks and national press coverage overnight. We were caught up and swept up.
When quiet came, we struggled and were numb for a long time. Anger, depression, guilt, denial, you name the emotions and we dealt with it, often at different phases to each other.
The best description I have of life after the loss of a child is that when he died, a 500-pound weight was strapped to each of us. We still must carry that weight each and every day.
I was experienced at grief, I had mourned the suicide of my younger brother a few years prior, and also the untimely sudden death of my best friend and key employee with my small company for over 20 years. I had spent a good time in therapy after my brother’s suicide and had tools and I knew the journey I was on, but the death of a child includes the death of your dreams for their future and also their future sons and daughters.
It took over five years to laugh easily, and nine years before I was fully re-engaged in my business and planning a future again. I’m shocked that it took that long. I knew where to go and how to head towards that logical place called acceptance, but this was a huge undertaking.
Within grief, there is the opportunity for massive destruction, but there is also the opportunity to understand yourself, learn and grow at a level those who haven’t traveled these roads will never know. We chose survival, we chose love, we stayed together as a couple and a family, and we feel we have probably accomplished the hardest tasks life could give us. It has been a terrible curse and a wonderful blessing from what we’ve learned at the same time, and the rest of our lives will seem somehow easier, even eventually confronting our own deaths.”
You Have To Learn To Live With It
“My oldest son died January 12, 2017. He was 32. I found him on his bedroom floor about 4 am, and there was a needle next to him.
I cannot describe the absolute sadness that enveloped my life. There are days that are going well, and a wave of sadness and pain will come over me. It is a shock that will always be there. You never get over it, but you learn how to live with it.
My wife and I have grown closer because of this. Each of us has grieved in our own way. I will also say that my faith is stronger because of this. There was nothing left for me to do to help my son. His addiction was so complete that nothing would help him recover. Because of my faith, I believe that he is in a place of perfect recovery. No more pain, lying or cheating, no stealing, no excuses. He is in a place now where he can be cleansed and made free. When we see him again, he will be beautiful and whole, and we can be a forever family. I so miss my son, but I am grateful that he is where he is now, and that sustains me.”
“It Made My Life A Darker Place”
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“I have three children currently living. There was a fourth child lost during pregnancy 20 years ago. While we were told the baby wasn’t far enough along to even notice when it ‘passed.’ This was untrue. My now ex-wife delivered a tiny little person at home in our bathtub. She understandably could not deal with it and went to our bedroom in hysterics. So alone with the baby, I could not fathom how to handle this myself. Until he moved. Realizing he was alive, I picked him up and held him until he was still. He fit in one hand. The only tasks I would ever be able to perform as his father were to hold him as he died and bury him.
The doctors were unsympathetic, even rude asking why we did not bring the ‘issue’ to the ER with my then-wife. A lady cut me off in the parking lot and when I tried to tell her what our situation was, she screamed ‘Eff you, eff your lady and eff your dead baby!’ and proceeded to take our spot. Then later, all the family and friends asking, ‘When are you gonna have that baby?’ and explaining that was not to be. Everyone means well, but almost no one could say anything of any comfort. ‘I guess God thinks you have enough kids and he needed an angel,’ was definitely not comforting. Having to explain to my other kids what happened was so painful as well.
I was 25 years old. Within a year, I was separated and then later divorced. People like to say, ‘Everything happens for a reason,’ and ‘God has a plan.’ To this day, I cannot believe an almighty omniscient being would allow this, along with all the other suffering in the world. Adversity builds character, but this was torture. It was years before I stopped having nightmares every night. Even now, it hurts to think he would be almost a man now, that a childhood of laughter and promise will never be.
How does it feel? I felt broken, damaged, haunted, alienated, remorseful, tainted, disillusioned, horrified, and sad. It was the worst thing that ever happened to me, right before finding my brother dead a few years later. I do not know that mourning the possibilities of a life is the same as losing someone you have lived with, but it made my life a darker place that I’ve never quite gotten as bright since.”