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going on living after a child has died

by Meagan Francis on June 1, 2010

I started writing this essay last year, around the time Heather and Mike Spohr lost their precious Maddie and Shana of Gorilla Buns lost her four-month-old baby Thalon to SIDS (Thank you to those of you who reminded me of her blog’s name.) I sent it to a few publications, all of whom rejected it (“too dark”), so I put it away for a while, then pulled it back out when my neighbor, a woman in her 50s, shared with me that her 13-month-old baby had choked to death in her care thirty years ago. Today, in the wake of Katie Granju’s loss of her oldest son Henry,  I’ve pulled it out, done a bit of pruning, and am publishing it here. My heart goes out to all mothers who have lost children. As much as I’ve attempted to put myself in your shoes, I admit it is a place I’m not able to go to for long.

My mother gave birth to five children, but only four survived: her third child, Patrick, who would have been my older brother and the middle in our lineup, died in infancy of SIDS (then known as crib death). Bits and pieces of Patrick’s story came out throughout my childhood and early adulthood, via wine-soaked confessionals from my mother.  He’d been a difficult birth; forceps were employed, and my mother had never felt he was quite “right”, she shared (considering my tender age, one might say she over-shared). As I got older, more bits of the story came out. She’d felt guilty because she had never really had a chance to enjoy him; she had three children ages four and under when he was born, and she was exhausted all the time.

The night before he died was a hot evening, she told me, and, as per the common wisdom at the time, Patrick was a bit overdressed for the weather. She’d taken him for a walk and when he’d fallen asleep in his pram, she decided to let him stay there for the night. (This being the early 70s, he was probably also sleeping on his belly with a few stuffed animals cushioning his face as my parents blew smoke rings in the living room).

Early in the morning, my mother told me, she heard a voice from somewhere in her subconscious say, “The baby’s died. It will be okay.” She slept a while longer, only to wake and find the unthinkable: the voice, wherever it came from, was right. The baby had died. And though it’s hard to imagine anything for my mother being “okay” again, she did live, she did go on to have two more children, she did laugh and dance at weddings and enjoyed the rest of her family and managed to have a full life in which she didn’t burst into tears every five minutes. Most days, anyway.

Since discovering mom blogs almost a decade ago, I’ve read countless online journals written by parents of sick, dying, or deceased children. Reading eulogies, looking at pictures of children as their conditions deteriorated, holding my breath through surgeries and efforts at treatment, I’ve cried over the unfairness of it all, felt cut deeply by grief for the bereaved parents. But it’s always felt like a safe kind of sorrow. I’d never felt like I could BE one of those parents…until a scare knocked me out of my delusion of having invincible children.

During my fifth pregnancy, my husband and I joked that we were really pushing the odds. After all, “getting away with” four uncomplicated births and healthy children was unlikely enough, we said: going at it a fifth time was like betting on the Cubs. When Clara, our first daughter, was born in March 2009 without complications, it appeared we’d had another round of good luck.

But when Clara was just over a day old, I noticed her lips looked darker than usual. And then as I watched, a dusky purple color crept up over her face and head. Rubbing her seemed to snap her out of it. Until she did it again.

In the space of a half-hour, Clara turned blue two more times. We called the pediatrician, the paramedics, (who came and found her looking pink and healthy) and finally, headed to the ER, where she turned an impressive shade of purple in front of the admitting doctor and sent the staff into a tizzy of activity.

As I sat helplessly on a chair watching nurses give her oxygen, a doctor was brought in from the pediatric floor to assess the situation. “Unfortunately, my best guess would be congenital heart disease,” she said over her shoulder.

My husband turned ashen, and I felt the world stop.

I imagined surgeries, a transplant list, a search for donors. A pale, weak child growing up in the hospital. Suddenly I realized that I could, in fact, be one of those parents with the blog about the sick baby. I could even be one of the ones whose story ends tragically. It really could happen to me.

Our NICU story turned out to be much happier than many.  Soon after we arrived at the transport hospital, a neonatologist gave us some reassuring news:  Clara’s blue spells were not caused by heart disease, but likely a minor seizure caused by a small amount of bleeding in her temporal lobe—treatable with medication, unlikely to happen again. Her hospital stay was uneventful; she had no more episodes, the medication they gave her appeared to work, and we went home ten days later with a healthy, hearty baby we all adore.

But since we came home from the hospital, I have found myself fixating on the potential deaths of my children in a way I never did before. I imagine all sorts of horrible accidents and diseases waiting to claim them, but one thing I can’t imagine is how I would possibly go on if the unthinkable happened. I can’t imagine going on to write lovely blog posts about my deceased child, take pleasure in the antics of my other kids, walk to raise money for research or start my own foundation. Frankly, I can’t even imagine getting out of bed again.

My mother died when I was 22, a mother myself, but still ruled by a sense of invincibility that extended to my children.  It wasn’t until years later that I realized that, for all the times I’d heard about Patrick, I’d never asked my mom what it was like to find her baby dead (probably because I didn’t want to actually think about that part of the story). Did she notice instantly, or just think that he was sleeping soundly? Did she try to revive him, or understand right away that it was too late? Did she feel panic, dread, fear, revulsion? How did the moments unfold as they waited for the ambulance to arrive? And later, when she returned home from the hospital to an empty crib, when she made the horrible but necessary phone calls, when she buried his small body—how did she stay upright?

I may never have the answers to those questions, but as a mother of five who suddenly feels the weight of helplessness in the face of her children’s mortality, I want to know. I want to know what it’s like to see your child dead and yet to continue living. I want to know that should the unthinkable happen to me, I could also survive, instead of spontaneously combusting, or becoming instantly insane, or simply ceasing to exist, which are the only three possibilities I can imagine for myself in such a scenario.

If my mother were still alive, I would ask her: How? How do you go on? Because two of my children are getting so big, and so independent, and I can’t be with them all the time. And two of my children are so full of small-boy energy, so trusting of themselves and the word, that they’re constantly doing dumb and dangerous things. And one of them is still so small, still so delicate and young, and who knows what’s going on in that body of hers. And put all together, there are too many of them, too many for me to protect all on my own all the rest of my life. Please tell me how you live with the first-hand knowledge that sometimes children die…without dying yourself.

But really, what would it matter? If my mother was here, maybe she’d say, “You can’t.” Maybe she would tell me that part of her died and never came back to life. Maybe she’d tell me that any moment of happiness she appeared to experience was a sham; that her heart was always with her baby; that any slights her other children may have felt during childhood were because she was thinking not of them, those lucky children still on earth, but of the one who didn’t make it. Maybe she’d tell me that the nasty divorce and the vodka bottle in the underwear drawer and the desperate attempts to find religion and the alcoholic ranting was all, all because of what happened that day.

What then?

It’s too late, in any case. My children are here; I’ve allowed myself to love them wholly and without reserve. They are as familiar to me as my own skin. It’s likely I’ve got several decades left on this earth; our family will grow exponentially, and car accidents, diseases and other tragedies will always lurk in the wings, threatening to claim one of us.

There is no way to make peace with that awful reality. But in the meantime, there is nothing I can do but love them, love them, love them, as if tomorrow would always come.

{ 40 comments… read them below or add one }

Heather B. June 1, 2010 at 6:54 am

The name of the person you are looking for is Shana. Here is her blog: http://www.gorillabuns.typepad.com/ Here is the post about her son, Thalon: http://gorillabuns.typepad.com/my_weblog/2009/04/thalon-bruce-myers.html

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Nancy June 1, 2010 at 6:55 am

My mother also lost a baby – 7 months old – in the late 50’s. I think it changed our family dynamic forever. Even though I wasn’t born until much later, it effected mt childhood too. I can’t imagine going on after losing a child. I can’t imagine losing one at all.
Lovely piece.

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Jill June 1, 2010 at 7:00 am

This was one of the most beautiful, poignant posts I’ve read in a long time. I have felt the same way after reading about Maddie and Thalon and Layla Grace and the other children taken from their families too soon. I, too, imagine horrible accidents and eulogies. But I’ve also hugged my kids a little longer and harder and been ever more dilligent about their respective, albeit relatively minor, health issues. I find something to be grateful about every day, even on their whiniest and most trying days. The moms who have lost and shared have given me that gift.

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The Mother Tongue June 1, 2010 at 7:40 am

Every word of this resonated with me. It’s a terrifying unknown, how it must feel to have a child die. Thank you for this powerful piece.

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Kara June 1, 2010 at 8:11 am

You put into beautiful words what I feel, too, when I “meet” moms online who have lost children. My heart aches for all of them; thinking of Katie today.

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Denise Schipani June 1, 2010 at 8:15 am

Beautiful, Meagan. I wrestle with the same questions: how do you possibly, ever, go on? I wrote a bit about this in a post about spirituality and faith:

http://www.confessionsofameanmommy.com/having-faith-the-spiritual-education-of-mommy-part-ii/

But I was also thinking about it the other day, at my cousin’s house for her baby’s first birthday. Her husband lost his little brother at a very young age, in a house fire. His parents, now in their late 60s and with two surviving sons and three grandchildren, are still scarred; his dad bawled like a child when my cousin gave birth to her son and named him for the lost child. You go on, but you take a wildly different path. And my other cousin’s mother in law, I only found out recently, lost a child to chicken pox when he was 18 months old. She had five other children. In fact, in a tradition that is unthinkable to me, she “gave” another one of her sons to a sister who couldn’t have children (this was before the other baby died). She has strength I couldn’t imagine. But I see in her eyes when she’s playing with her newest grandson the same old pain.

We have strength we could not imagine having to call to action.

Denise

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suburbancorrespondent June 1, 2010 at 9:06 am

I swear, every time I read an article about a toddler who has died because he was left in a hot car, I almost throw up. That could have been my 3rd child, but for the lucky chance that my oldest left the car door open on his way out. And I’ve had enough experience with teens now to know that sometimes you cannot save them from themselves. Merely thinking of the tragedies that have almost occurred is so devastating that I too cannot imagine how I would have gone on if the worst had happened. As you put it, the world simply stops when I try to think of it. And our close brushes have taught me that none of us are immune, and none of us should sit in judgment of that suffering parent.

Compassion is a marvelous thing. And it costs us nothing.

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Liz June 1, 2010 at 12:07 pm

I really don’t worry about drugs (for a few reasons I don’t care to elaborate on here). But that’s only one thing checked off the list. My teenager has a very cavalier attitude towards running across the street. As most teens probably do. She is a good responsible kid, but she drives, she crosses streets, she is FEMALE and thereby easy prey for all kinds of sickos in the world.

We’ve had our near misses we laugh about now, like the ten year old who cut his arm in the garage and we later found out he missed a major blood vessel by a fraction of an inch.

And worst of all: I rolled my car taking the youngest to school last November. Completely my fault. By some sheer bit of dumb luck, he and I both walked out of that car unscratched. But it could so easily have ended very differently.

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Duana C. Welch, Ph.D. June 1, 2010 at 2:40 pm

Beautifully written, soulfully expressed… As a mother who almost lost her only child to a chronic disease, I often have the feeling that my child might be mine only for a time, and I do not know how I would survive her passing. Indeed, I’m quite sure I would not even want to, and my religious fervor is not such that it would keep me here.

I hope all such worries, for you and for me and for the parents of the world, remain hypothetical. Until then, the old adage rattles ’round my brain:
“The decision to have a child is the decision to forever have one’s heart wandering outside one’s body.”

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Rebecca June 1, 2010 at 7:26 pm

“… love them, love them, love them, as if tomorrow would always come.” That is a perfect sentiment.

An old school friend and I had babies born within a day of each other. Last summer, she lost her daughter to congenital heart disease while my daughter continues to thrive. The loss of a baby so close to my heart is too dark a place for me to dwell for long. So, I don’t. And we shouldn’t, should we? All we can do is love.

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Wabash June 1, 2010 at 7:54 pm

In 2003, I had a premature baby that died when he was 9 days old. Looking back now, I didn’t really have a choice in waking up every day, I had 2 other children to feed, take to school, etc.

At one point, I wished the ground would just open up and swallow me whole. Fortunately, I had a wonderful OB that recognized my grief/PPD symptoms and wrote out a prescription for Zoloft. She had my husband promise that he would get it filled on the way home from the dr’s office. I fought taking the meds since I thought that they would numb my pain. And I felt entitled to that pain. But I ended up taking them. They didn’t take away any pain, they just helped me get through my day.

I think part of the healing came with my last child who was born 2 years after my son died. I don’t think a parent can completely heal, but the good days start outnumbering the bad. Now, 7 years later, I can look back at my son’s short time here on earth and not cry when I think of him.

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Jennifer Fink June 1, 2010 at 7:57 pm

Every mom I know ponders this question. There are a few women in town here how have lost children, and every single time I see them, I wonder, “How?” Thanks for putting into words what so many of us feel.

Jenny

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Lori June 1, 2010 at 8:01 pm

My first baby was stillborn at 6 1/2 months of pregnancy, and even though that was almost 14 years ago I still think about her every day. It never leaves.

Since I know many people who’ve suffered more than one tragic loss, it doesn’t exempt me from losing another child. Maybe because of my loss, I really consciously cherish each moment I have with my two living children…I really do not take them for granted at all.

But thank you for reminding me to hug them just one more time today :)

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Michelle P June 1, 2010 at 8:02 pm

Denise Schipani expressed it perfectly: “You go on, but you take a wildly different path.” If we are the sum total of our experiences – and losing a child is surely one of the most traumatic experiences I’ve ever witnessed – then what actually happens to parents in these circumstances is not only unknowable, it’s unimaginable.

I watched my parents deal with the accidental death of my younger brother (he drowned at the age of 19), through the months when they were literally sick with grief, and the eight years since. They (as am I) are forever changed by his death but not necessarily in a negative or even regrettable way. And that’s because (and I’m not sure how to say this right) it’s not only in death that we were changed: that change actually began with his life – the fact that he died is only one aspect of who he was, just as the fact that my mother is not just a person who lost a son, she is a person who HAD a son for 19 years. And after working (and it really WAS work) through their grief, my parents choose to go on living full and even healthier lives partly as a celebration of his life. They see it as his inheritance, as something he’s given back to them, a way to make sense of his death – it gives even more meaning to their lives, to their identities as parents (because you don’t stop being a parent when your child dies). I am incredibly proud of my parents for this: it is not only one of the bravest decisions they have ever taken, but it means that I have not lost them along with the future I would have had my brother.

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Michelle P June 1, 2010 at 8:08 pm

Please add a “with” to that last line!

Sorry, I got a bit carried away – I also wanted to say I found your post really moving and thoughtful. Thanks!

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Jennifer Margulis June 1, 2010 at 8:31 pm

i’ve been feeling so sad about katie’s son today. you lost your mom too too young. thank you for sharing this story. now is hard but later–when the rest of the world goes back to their every day lives–will be even harder for katie and her family. my heart hurts for them.

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Meagan Francis June 2, 2010 at 6:38 am

Thank you for all the comments…particularly to those mothers who shared their feelings about losing children. I’m so grateful to you for taking the time.

Michelle, that is a really beautiful tribute to your parents.

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Sue Carney June 2, 2010 at 9:00 am

What a beautiful piece! Yes, dark, but so is the subject you expressed so eloquently. My twins were born at 28 weeks, so I know what its like to stand at the doorway between here and there. I was forced to consider the worst from the moment they were born, so that fear colors my entire experience as a parent. There was no “before”. Even though they are healthy now, I am constantly worried about losing my children, and wonder all the time how I could possibly go on. For me, it has never been “that could never happen to me,” but rather, “that almost happened to me.” Thanks again for sharing.

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Debby Pucci June 2, 2010 at 6:17 pm

Meagan, wow! I have lived my life with the fear of losing my children. I have prayed to God each day to please take me first, take me instead. Then when I was in bible study years ago I asked the question, “If Heaven is so wonderful why wouldn’t I want my children to go there?” Was I doing them wrong by praying to God to take me first. (I haven’t got a clue) I was so naive about infant death. I started blogging around the time that Maddie passed and that changed my life. I had this idea years ago about passing out handkerchiefs to the mother’s who had children who died. See when my friend lost her 13 year old son to suicide 10 years ago I gave her a handkerchief telling her that it was for her tears. I had recently received some inheritance and knew what I wanted to to with it. I thought that maybe, just maybe I could do this with a blog. So I started my blog called “For Your Tears” and started visiting mothers who had commented on Heather’s blog. Then I went to other baby lost mothers from other comments on others blog. Almost a year later I have sent out over 220 handkerchiefs. I read their blogs daily and their journey is hard. These women are different, their lives have been changed forever yet to most people they think they have moved on. They don’t move on, they just learn to survive with the heartache and one of the sad things is that most people do not know how to talk with them so slowly they lose contact with family and friends. I heart these woman.
You can read more on my blog at http://wwwforyourtears.blogspot.com/
Would you ever let me link to this post?

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Ann June 2, 2010 at 7:01 pm

Thanks for your article; very touching. I, too, worry frequently about losing my precious little ones and think what would happen after the fact. There are so many hypotheticals that come to mind. My heart truthfully goes out esp to the immediate family members and extended family and friends of anyone who loses anyone but especially to those who lose children at such a young age. I relish each moment with my children as much as possible. Please do the same to yours…

What a beautiful reminder.

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Amber June 2, 2010 at 9:57 pm

This is a truly beautiful and poignant piece.

I can’t imagine the pain of losing a child. My heart goes out to those who have. And for now, all I can do is hope that I never have to know. There’s no way to protect myself from it, in any case.

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Kristin T. (@kt_writes) June 3, 2010 at 8:48 am

Thank you for writing this, and sharing it with all of us. Beautiful, and so very important.

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Maisie June 4, 2010 at 1:05 pm

your blog really touched me. I am 17 years old. When i was 16 I got pregnant. In my ninth month of pregnancy I found out my baby had no heart beat..I was in such shock I really didn’t understand. I was like “ok so how are you going to make him all better now?” It wasn’t untill i heard the doctors office door slam from my sister running out of the room that i was slammed back into reality. I started screaming..”what! no! no!” thinking how in the hell could this be? a babys heart doesn’t just stop beating..does it? well sadly enough it happends everyday..infact that month there were more stillborn babies delivered than healthy new borns. I was sent back home..for FIVE days untill i was called back to be induced. In those five day..i can’t really remember much i think it was the lords way of helping numbing the pain for a little while. I went into that hospital..crying,smiling,scared,hurt,excited. 14 hours later I was holding my six pound lifeless baby boy in my arms…Aaden.Angel Aaden. I was in such shock i just sat there staring at him..no tears..not even during labor. As soon as my family walked into that room i was smiling..i was so happy i could show him off..so proud at how beautful he was..so scared..of the death i was holdng in my arms. I studied his hands and toes..held his hands for hours while i slept. The next day i had to leave the hospital..i had no insurance and my mom had other kids to go home and take care of. So many months i day dreamed about the day i would take him home..i walked to the mini van..empty armed. I didn’t say a word.I didn’t cry. A couple days later was his funeral. I didn’t know what to exspect walking in there. I didn’t even know before aaden that they had funerals for babys who never lived on earth. When i took my first step into the funeral home i about fainted. There not even ten feet away from me was a two foot long casket. After i regained air supply i took a seat in the front row of chairs..right in front of him. I just sat there stairing..rubbing my belly.i wanted him back in there so bad. I watched his father carry his casket to the hurse. We both looked at each other..as i passed by him.
From there is was on to the burial. I didn’t want to leave him there i felt like he had been ripped from me right out of my arms.
as the months have gone by i go out to visit him once or twice a month..and take pictures. It’s crazy how fast time has gone by you see it go from summer to winter so fast..and now its back to summer..next month he would be one.
your article touched me in a very deep way..you put everything i was feeling in it.
thank you.

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Nicolle B. June 5, 2010 at 10:50 am

Thank you for posting this. Ever since I was pregnant with my first everyday I tend to get paranoid about the what if’s of losing my child(ren). It pains me because I don’t know how I’d live my life if that happened. However, I don’t stop my life or not do something because of it. I was reading the previous comments and just don’t know how you can go on and then have more babies. More power to them. I think I’m just weak.
Have a great weekend :)

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Meagan Francis June 7, 2010 at 7:13 pm

I just wanted to thank everyone who shared their fears here and especially thank those whose fears came true…the brave mamas who’ve shared about losing children.

Debby–your idea is a beautiful one. Of course you may link to my post.

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Diann June 8, 2010 at 9:04 am

Megan – another well-written post. Isn’t it something that our worlds change so much when we bring a little one into the world? My husband and I have 2 wonderful girls and we do think about losing them. At first, I thought it was sort of morbid but now, after reading your post, I think it’s just what parents do. I think we all know that many many things are beyond our control. I have to say that I hug my girls a bit longer than I need to. Sometimes it’s my way of wishing them well or pretending that a long hug will help protect them as they go out into the world.

Thank you for your caring and poignant words…

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Cherie H June 23, 2010 at 6:12 pm

Meagan’s article is so accurate but more so, I want to thank Michelle P who commented on June 1st – your comments were incredible and truly hit home. I lost 2 little girls: Randee Marie in March 1971 shortly after birth, and then on July 31st 1972 our daughter Robin Marie passed away from SIDS – this past September 19th our 36 year old son Bobby passed away leaving a beautiful wife and 2 little boys 5 & 6 and I must admit I wasn’t sure I could go on.. But I am blessed with 2 beautiful sons – Randee’s twin Ric who will be 40 in March and Sean who just turned 30; my fantastic husband & best friend-who is my rock; 2 great step-sons, 4 awesome daughter-in-laws and the loves of my life-our 8 incredible grandchildren ranging in ages from 9 to 2… I miss Bobby so much it actually hurts, but I have always believed that happiness is a decision and despite all the tears and the pain, I also know that we need to live life to the fullest for our sakes (including our sanity) and for those around us who love us and whom we love – who are still here and deserve our time and full attention and yes – our happiness and to live the life that our children can no longer live.
So thank you Michelle P. for reminding me of how important that is – I felt your comments were so important I took the liberty of putting them on the Blog that I maintain (www.journeyfrommourning.blospot.com) for moms who’ve lost children in our hometown of Lake Havasu City, AZ – No, losing A child isn’t easy and the most unbearable pain imaginable – but it is survivable and sometimes the price we pay for being given these children to love…

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Sheri Perl September 21, 2010 at 3:18 pm

I lost my son Danny on July 1, 2008 to an overdose. He was 22. In dedication to him I formed the first and only Prayer Registry for parents who have lost children.

Please see my website and read about The Prayer Registry. This free website service is dedicated to all of the families who have lost children, whatever age that child was when they passed. This site registers the anniversary day of our children’s crossing. The members of this online
community,the Prayer Team, have the opportunity to honor their child’s legacy, connect with other bereaved parents, and participate in world-wide group prayer for every registered loved one on the anniversary day of their passing.

There is no charge for this service; it is my sincere hope that every bereaved parent who registers a child will join the Prayer Team and be a source of prayer for all of the children on the other side. Each time another child is registered, the Prayer Team grows larger and stronger.

Please email Sheri at theprayerregistry@gmail.com to register your loved one on The Prayer Registry. By registering, you will have a forum to connect to other bereaved parents and I will be able to upload comments, biographies, or any other information you want to share about your child with our community of bereaved parents. Once registered, you will be a member of the Prayer Team and will receive Prayer Registry reminders one day before the anniversary day of one of our kids.

Please feel free to email any questions, concerns or feelings that you would like to share. My door is always open. I hope that this site provides some small measure of balm for the wounds of loss. From one bereaved parent to another, I welcome you to my site and offer my support.

This is one club that none of us would join by choice, but since we find ourselves in this unthinkable place, we stand stronger when we stand side by side.

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Lynn Norris November 14, 2010 at 1:50 pm

We lost a daughter shortly after she left her teen years from 19 to age 20 – just before her wedding day. She had visited our farm for a shopping trip to finalize the wedding plans. We changed her wedding bouquet into a funeral wreath. I wrote a book – WHIPPOORWILL: A Journey Through Loss. It tells about losing our Jennifer, a tiny petite butterfly so full of life & the memorial project we poured our hearts into – Lighthouse Library: http://www.freewebs.com/eccrc Now I am writing my 2nd book – requested by the publisher. It is SAFE HARBOR: Shipwrecked – Finding My Way Home. I don’t know if you really never “get over” the loss of a child. Your life is different. But you use that loss to hopefully help others. A part of you is always missing – like one of your arms, or your legs. But you can & will survive. Hopefully, your story will help others should they have to walk in your shoes. It helps to find others who have walked where you are walking. Thanks for this website. Blessings to all parents who have lost a child. My own mother lost a baby – a little 3 month old boy – his burial on Christmas Eve the year before my birth. I had no idea the sorrow she had gone through until I went through it myself.

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gorillabuns December 30, 2010 at 11:19 pm

i’m not sure how i came here but yes, death in itself is dark. some choose to make it all about light, God’s will and destiny. On the flip side, others choose to tell you a first person account, not what people want you to feel or react.

Thank you for sharing our stories. They aren’t pretty. They are sad and truly dark. I don’t wish it for anyone in this world to ever feel such pain.

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kimi January 10, 2011 at 8:37 am

What a beautiful story. I too am a mom of 5 children. My middle son has Type 1 diabetes. For him, insulin is life support. I go to sleep every night terrified that he won’t be alive in the morning. That one thought haunts my dreams every night, wakes me in the morning, and has for 6 years. It will until I draw my last breath.

But we go on because that’s what Moms do. We love them, hug them, and give them to God. Because in the end that is all we have control over.

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Tam January 15, 2011 at 3:30 am

I read this piece not long after you first wrote it. Back then, it had only been a few short months since my second daughter Ariana had passed away from a variety of medical complications, and prematurity.

The day we had to make the decision to let our daughter die, to free her from her pain and suffering here on earth was the most horrific day of my life. The second most horrific day was the day we heard the creamation had been done, and third was collecting her ashes after the memorial service.

I don’t brag, or gloat here, but I have heard so many times in the past year “how have you gone on, you’re amazing, I’d be in pieces on the floor”.

All I can say is this. I have to go on for my other daughter. I have to go on for my husband. We all break down, we cry, we weep, we scream from the pain that sits in the pit of the stomach every single day. Every day we miss her. Every day we wish things had been different. The pain never goes away, it just gets burried under all the other “stuff”. Sometimes, it rears it’s ugly head and kicks us to the ground for a few days. We have to accept that our lives are so different from how we expected them to be. We have to think, before someone asks us how many children we have wether we will answer “Two” or “Three”.

“Normal” was stolen from us on the 5th of January 2010. In it’s place is something different. We are more humble, we are more apreciative, we are kinder, more generous, more loving. We learnt a lot from our daughter, and from our experiences with her. Ariana was here for just 4 short days but she changed every aspect of our lives. She made us better parents, better husband and wife, better friends.

When your child dies, your “normal” changes. You get a new normal, but it will always be different. You go on because you have to, because you owe it to the child you love with all of your heart.

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crystal June 15, 2011 at 11:04 am

i lost my daughter 4 years old in a fire 4 months ago :( i dont know how to deal with this my life is over i juss dont know what to do anymore, hold your kids and kiss them everyday for tomorrow is never promised i left the house for 1 hour came back and she was gone, oh god how i wish i can turn back time but its too late all i can do now is cry and be sad, accidents do happen cherish ur loved ones everyday :'(

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Olivia August 15, 2011 at 11:52 am

Hi, you ask what it is like to find your child dead. Unfortunately, I know the answer. My infant daughter died suddenly and unexpectedly 2.5 years ago of an undiganosed congenital heart defect. Like your mother, I “knew” my daughter was dead about a half hour before I went to check on her. When I found her, I knew immediately she was gone. She was grey. There was no question of whether she was just deeply sleeping; the look of death is obvious. Even though I “knew” beforehand, it didn’t soften the blow. Finding a dead baby is absolutely horrifying — your worst nightmare times 1,000. I screamed and screamed. I had terrible flashbacks for nearly 2 years.

The remarkable thing is that even though I experienced this horrific tragedy, I’m still a very happy person. I have a wonderful marriage, three other children, including one born subsequent to the death, great job, friends, my health, etc. I am profoundly grateful for all my blessings; even more so since my daughter died.

I wouldn’t assume that everyone you encounter who has lost a child is “faking” their happiness, or is forever broken. Everyone grieves differently and some people really do move on and are ok (I speak from my own experience and from the experience of my many bereaved friends). So I would say that humans are a resilient bunch, and losing a child won’t destroy your life unless you allow it to.

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Kathy Kugler August 26, 2011 at 10:49 am

I understand the questions you want to ask your mother. 3 months ago I found my 17 year old son dead in his bed. I do not know how I have continued on for this long now. The nightmare continues in my mind. No one can tell me what was wrong with him that he had a seizure in the middle of the night that ended his life. There was nothing wrong with him. I need to know why.

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JoAnne September 4, 2011 at 8:33 pm

I lost my 24 year old daughter 21 months ago in a car accident right down the road from my house , it was a winter snow storm . I do know what its like to see your child dead , its horrible , to see her there in the ER with the life gone out of her and knowing i could not help her , she had 3 children . I struggle every day to deal with her death , i wonder why her , why did God choose this to happen to my family ? Everything in my life has changed , even the way i look at life has changed . I am scared about loseing other people i love , i have 3 other daughters and 10 grandchildren . All i can say is … the death of your child is the most horrible pain to have to go through , i miss my daughter Jamie every minute i’m alive , and for all you moms and dads out there who have not buried your child … you thank God every night , because it can happen to anyone , at any time . Thank you , JoAnne .

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Amy February 5, 2012 at 5:52 pm

I gave birth to death. My beautiful, perfect daughter’s heart stopped beating while she was still inside me. I had a perfectly normal pregnancy until the day I went into labor. I didn’t even have any morning sickness. She had absolutely no abnormalities and the doctors can give us absolutely no reason for her death. I was 38 weeks, 5 days pregnant – full term. She was PERFECTLY FORMED AND HEALTHY. After I gave birth to her, we were able to hold ger for 16 and a half hours before we decided if we kept her any longer she might not be viewable at her funeral; her lips had darkened and some of her skin on her tiny nose had begun to peel and her fingernails had turned purple from the blood pooling in her finger tips. Every day I wish I was dead with her. I can’t leave the house because all of the babies, pregnant women, and small children I encounter EVERYWHERE I GO remind me that she is gone and I’ll NEVER be able to hold her, raise her, or see her again. I find this essay inordinately offensive. Be grateful for the FIVE children you were blessed with. I didnt get ANY time with my one and only child. I’ll tell you what will sustain you if the unthinkable should ever happen to any of your children; your memories of them and the fact that you were able to BE their mother for ANY amount of time will keep you going. Your other children will give you reason to keep breathing. I have NONE of the things you have. I have no memories of mothering my child because I never had the chance to do that, and I have no other children. All I have is an empty house with a full nursery and the desire to die every day I live. How DARE you ask what it feels like to lose a child! Thank your lucky stars you haven’t had to endure this hell and don’t prod those of us who are living it for the gory details. Believe me, you DO NOT want to know what our life is like.

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Dawn June 17, 2012 at 4:00 pm

I lost my 20 yo son (a twin) 3 weeks ago. The only thing I can say is this…you do not for one second want to know what it feels like to lose a child. It is the worst pain anyone can ever experience, and a pain so intense that you are surprised the pain itself doesn’t kill you. All I want to do is die, but I have my deceased son’s twin brother to live for. If something should ever happen to him, it is a guarantee that I will take my life.

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Jennifer July 13, 2012 at 2:25 pm

Very well said. I lost my 6 year old daughter over 5 months ago after a prolonged seizure. Its unimaginable pain but I have to get up and live everyday for my living child. The pain comes in waves and often knocks you down and back to day one again. The loss instills an empathy and compassion for others-especially those that have also suffered a loss. I often wake up in the morning, hoping that it was a nightmare and I have that day she died to do over again.

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Lynn October 31, 2012 at 1:02 am

Stumbled upon this site by accident tonight. Was wondering how all who posted are doing by now? It has been about 2 years since i posted. http://shipwreckwriter-lynnpettigrewnorris.webs.com/apps/blog/

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