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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

for one and all > Lost and I can't find my way

Hi everyone here at Glow. I’m new to this forum and not sure where to start.

I found Glow from a random Google search. I’ve been silently reading all your posts and waiting for my time to share my story.

My husband and I lost our little girl, Ellie, 7 weeks ago during delivery. It doesn’t seem like it was that long ago, it still feels so fresh.

My pregnancy and labour were completely normal…until it wasn’t. Ellie was born with a heart rate of 40bpm and was not breathing. They couldn’t bring my little girl back. She was just too broken. The information we have so far (we are still waiting for pathology results) is that she was oxygen deprived for at least 90 minutes before she was born. We also know that the heart monitor was inadvertently picking up my heart rate and not hers so no one knew she was in distress. The shock of having a pregnancy that couldn’t have been more perfect and a labour that couldn’t have been more perfect yet having a baby that was just so the opposite is so hard to bear.

I feel so…..I can’t even think of what to type. Sad? Angry? Hopeless? Helpless? Broken? Depressed? Pointless? Lost? The emotions are all over the place and I don’t know how to contain them. The reality of what happened hit my husband like a freight train when it first happened 7 weeks ago. I wasn’t the same. I think my mind/body went into a state of shock. A way of protecting myself from the raw emotional hurt. I’ve been seeping into the reality of what happened over the last 7 weeks. Everyone says each day gets easier. For me it doesn’t. It gets harder. Each day I am reminded even more that I don’t have my little girl that I had been dying to meet and was so excited about. I didn’t get to meet her. Not really. Yet I miss her so much. How can you miss someone you never knew?

It doesn’t feel like it happened 7 weeks ago. It feels like it happened yesterday. The emotions I have feel so raw. I can’t even imagine them ever going away. How do you even deal with this? I know people try to help but they say “you’ll get through this” and “you just have to go through the grief process”. That makes it sound like there is an end to this. There is no end. She is going to be in my mind forever.

I can’t stop thinking about her. She takes up every single ounce of space in my mind. I think about her, what I imagined her to be, what my life was going to be like, the life I no longer have in the past and the life I anticipated with so much excitement also not being here. The thought of her conjures up feelings of love but also feelings of sadness. I can’t separate the two. I can’t be sad for the rest of my life, but in order to achieve that I am going to have to actively push her out of my conscious mind so that I can function day to day. That just doesn’t feel right. To actively forget your own daughter so that you can get out of bed. Even if it’s just forgetting her for that moment. It’s not natural. No mum should have to forget their child…ever.

I’m so sorry that we are all here. I am so grateful I found Glow but I am so sad that we all have to be here. We have no choice in the matter and it’s so unfair.

Gemma (Ellie’s mum)
June 15, 2017 | Unregistered CommenterGemma G
Gemma im so sorry for your loss. I lost my little girl 4 months ago and can so relate to what you are feeling. Like you I was in shock and numb for a long time its only now im processing what has happened. I think its our minds way of protecting us from this unbearable trauma. I still get days when I just dont believe its happened and feels like a dream. Its such a confusing time. All I can say is just be very gentle and kind with yourself. I found doing something creative to honour my daughter very helpful as its just our special time. You will never possibly forget your little girl. Life is cruel in the way it keeps moving, I wanted everything to stop but it pushes you forward. Somehow you will have a few more okay days than bad.
June 15, 2017 | Unregistered CommenterConfused
Gemma - I'm so sorry for the loss of your sweet Ellie. I can completely relate to what you are feeling. We lost our baby boy around 7 weeks ago in labor following a perfect pregnancy with no problems as well (though it appears our baby died in early labor in the morning before we left for the hospital). I think the full impact hit my husband first while it sunk in much more slowly for me - he's also recovering faster than I am. Every morning when I wake up, I remember everything and it hits me anew. I've gone back to work now too and my life is starting to resume most of its old rhythm - except that there is this giant hole and I cannot stop thinking about it all the time. I try to keep myself from running through all the "I'm supposed to be doing X/Y with my baby now" so that I can make it through the day. Then - when I have good days, I worry that it's because I'm ignoring it or pretending it didn't happen and that's not good either. The thought of doing this for the rest of my life is so exhausting. I'm sorry we all have to learn to live with this.
June 15, 2017 | Unregistered CommenterSR
Gemma, I am so, so sorry for your loss of your precious Ellie. None of it will ever makes sense, and you're right, the grief will never be over or go away. But it changes, for sure. I did wonder, how will I ever keep living a lifetime full of this heavy sadness? Especially as a previously happy, optimistic person. But in my (limited) experience, 6 months on, it's no longer ALL sadness, although the sadness and disbelief is absolutely still there and still colors most of my days. You learn to function little by little WITH it, like a scar from a trauma that aches from time to time or when you brush up against it. You are still so early in your loss-- it did not start to get 'easier' for me until maybe 4 or 5 months in (and in fact I think was getting harder each day up to 3 months b/c of how long it was taking to sink in, dealing with misplaced guilt, trying to rush 'feeling better' etc) and everyone is on a different, unpredictable timeline. Even now, I have lots of setbacks, unexpected triggers, days where I just can't do anything, and overall still feel unmotivated and can't stop thinking about what our life should have looked like and what my son should be doing now as a 6 month old, particularly as I look around to our friends with their full families or harder yet, babies the same age as would have been my son (and visibly pregnant women make me lose my mind). Everyone says becoming a mother changes you-- becoming a mother who has already lost her child I suspect changes you even more profoundly. That can't be rushed or stifled in spite of how invisible we feel socially and the absence of our children on this earth.

You will never forget Ellie. You will think of her everyday for as long as you live. As you should! She is your daughter. One of the hardest things for me has been learning to be patient and just feel what I'm feeling and to forgive myself for not sticking to some kind of grief script or being able to rush through the darkest weeks and months. Think of her all the time if you need. Take breaks if you need. Read on Glow and other accounts of people who know this heartache. Write and share. Find a grief therapist or a support group or both. Go outside, exercise, do yoga, or honestly anything that makes you feel ok in your body because part of the trauma is very physical too. Or sleep the day away when you need that too.

I don't believe that time heals anything but over time things will very, very gradually start to shift and I think you'll only notice it in retrospect. We are all on this long, rocky journey together. Thank you for sharing Ellie's story. Wishing you peace in these days ahead.
June 15, 2017 | Unregistered CommenterSteph
I'm a little over a year out from delivering my stillborn son at 37 weeks. I remembering reading online stories when I got home from others with similar experiences. A common refrain was "you will never get over it." I thought "NEVER GET OVER IT??? I'm going to feel like this the rest of my life?!?!?" I was so depressed and even a touch suicidal in the early weeks. I wanted to know that I could still have a life worth living.

I can say that I do feel my life is worth living. I'll share with you a bit of what this past year looked like for me grief-wise.

1-2 days: Shock. Did this really just happen? Am I really leaving the hospital empty handed? I think I was emotionally shut off just to get through the things I needed to do. In my case I had to call my husband to tell him our son died, go through labor and delivery, and then tell our older children about their baby brother. I then took ambien and had a drug induced night of sleep. The gravity hit me the following morning and the loud primal sobs finally came.

First 3 weeks: Is this real life? I started realizing all the ways in which my life was suddenly torn asunder. Everything a reminder. The baby clothes he wouldn't wear. The bassinet we bought no longer in our room. The permanently empty place at the table. The 10 month maternity leave I wouldn't be needing. Two brothers where they should be three. Lots of time spent holed up in my room, rarely getting out of bed.

3 wks - 6 months: Settling in to a new reality. Sadness and anger weave through my life. Why my son? Why us? Autopsy comes back normal. My tests come back normal. Friends and family successfully give birth. Anger. Jealousy. I return to work. It is a refuge. I feel competent. I focus on my health and wellness. I train for and complete a 5k. I lose the baby weight. I go to support groups and am reassured that this didn't happen to me because of a moral shortcoming. I feel stronger.

6 months - 12 months: The fact that I have a dead baby is now a something that I have integrated into my life story. I am still triggered by newborns, my son's peers, and pregnant ladies. I am still not truly happy for friends and family that give birth. I find joy in my relationships. I continue to feel useful at work. I try to conceive again (and succeed...a different story and a new stress). I am still sad that my son died. I still find it unfair that I had to experience this trauma and loss and I still feel a ripple effect from it in my life. In this respect, I'm not over it. I now know that when people say that it's not so much that the acute grief never gets better. It does. It really really does and life will be worth living. I will never be okay about him being dead and that's perfectly reasonable.

Hopefully this was helpful. I hope your grief becomes easier to carry, that life feels worth living, and hope can one day return.
June 15, 2017 | Unregistered CommenterMom2htb
What beautiful advice from everyone who's commented. I just wanted to add a couple of thoughts that help me.

It will not feel like this forever. However I'm feeling today does not mean that this is how I will feel tomorrow and next week and forever.

There is space to be able to feel love and pain and happiness and sorrow all at the same time. Like you, my daughter's death came after a completely uneventful pregnancy. I too found it such a crazy, sudden horror to happen out of the blue but I've gradually been able to reclaim some of the happiness in the memories from my pregnancy. When I think about how I was pregnant when I was last at a certain place, or event, or whatever, I feel that body slam of pain, but I can also feel that love and remember the happiness there. As the months go by, I'm finding more space to feel all kinds of other emotions while also still loving and missing my baby. Even happiness :-)
June 15, 2017 | Unregistered CommenterK West
Oh Gemma,

I've thought about you all day. I know your pain, and my heart aches with empathy. I'm so sorry. Although I know you wish you didn't need to be here, welcome to Glow. This site has been one of my lifelines. I hope you will come back often and will post as much as you like. The folks on this site will listen to you no matter what you say. You can repeat the same thoughts and what-ifs and questions one hundred times, and we will go there with you and listen.

My story has a lot in common with yours. One year ago, my daughter died during my early labor after a flawless, beautiful, 41-week pregnancy. All of the emotions you describe sound completely normal for what happened to you and Ellie. My husband reacted the same as yours - total devastation and then seeming "normal" again almost immediately. I was the opposite. Of the two of us, I might have actually been less emotional than he was at the hospital (I had a job to do)... and then the reality sunk in way later. Looking back now, there are actually things I said and thought in the hospital that were way more practical and clear-headed than you'd imagine for the news I'd just been given... which just shows what a state of shock and denial I was in. In a grand example of "every day does NOT get easier," I found the days, weeks, and months after leaving the hospital to be far worse than the time actually there. The obvious difference is that while in the hospital, my daughter was physically with me. Afterward, the whole experience of ever knowing her suddenly became dreamlike and unreal.

The rawness you mention... yes. I know for weeks and weeks after my daughter died, I'd refer to "Saturday" and always meant the last day she was alive... no matter how many other Saturdays had happened since. Time had frozen. "Yesterday" also meant the day before she died.

You are correct - there is no end to the grief. In my earliest months of loss, I realize now I was in more shock than I was aware of at the time, only because I am a lot more lucid overall now and can better tell the difference. However, the grief itself remains raw and gritty and frightening and all-consuming. Some things do change for better over time, in the sense of daily functioning. While I still have days when I am nearly non-functional due to the grief, I can now run errands or do tasks to completion or be somewhat reliable. In my earliest months, I lived in a total PTSD-like fog where I could barely tell you what day it was, let alone actually DO anything on that day. The only time I was paying attention was if I were reading something online that reminded me of my own story. That had my full attention. Otherwise my mind was on its grief planet, and I could not even make myself pay attention to the world around me, which somehow continued to spin without my child.

When my grief began, I was at once grieving my daughter herself, while also grieving all the moments and "should-have-beens." For instance, on maternity leave, I'd of course want my child back, and I'd also be in a constant mental state of "I would be feeding her now... I would be rocking her now... I should be able to text a picture of her to my friend... I should be asked about her... I would hear her name, ever..." etc. Now, I miss her as fiercely as I ever did. I don't imagine that will ever change. What has changed is that I am more used to the grief. I am more accustomed to feeling awkward in social settings, to wondering when/if someone will bring up children in conversation, to mentally being somewhere totally else a lot of the time, to feeling alone in a crowd nearly always, to having trouble finding meaning in most things, etc. All of that is still sad... but it's simply not as shocking as it once was. I used to expect to feel like a new mother and then would feel so deflated that I did not... Now I don't even expect it.

I remember early on, having that moment of realizing "I am going to have to live with this FOR THE REST OF MY LIFE." It's terrifying and led to a lot of my "Universe, please take me now, I beg you" thoughts. The three things that have helped me at all have been (1) writing, (2) passage of time, somewhat, and (3) talking to other women who know this pain. In times when the swells of anger or jealousy or sadness get particularly heavy, I even will tell myself, "Someone else has had this happen. You've read stories like yours. You've talked to other women who do know this pain." I have to really, intentionally remind myself that I'm not alone.

There's no easy way out in the early days or really ever. The grief does shift some over time, into something you can function with, but it never really leaves. I know I deeply resent when I hear things like "maybe such-and-such would get your mind off it for a while" or "here's an idea for a distraction." For me there has been no such thing, and I feel insulted and completely misunderstood when I hear things like that, as well as super aware that the person saying that has never had a loss like this.

Keep breathing. In the earliest days I had to think about the next tiny thing - not even the next day - or I would just want to kill myself. I'd think about my husband coming home from work, and then I'd think about what we'd eat for dinner, and then I'd think about brushing my teeth, and so on. To think about the real future was too intimidating, too sad, too dark, too much of something I didn't even want anymore. Slowly it's become easier to think about something the next day or even the next week. And I don't beg the universe to put me out of my misery nearly so often. But the loss does seep into every corner and crevice of life, and when those moments happen... if nothing else, feel free to come here on Glow and spill the hard, bad, and ugly. We'll gladly listen and respond. You are a warrior for being on here telling your story. Sending love to you and to your darling Ellie.
June 16, 2017 | Unregistered CommenterCameron
Hello to you, your husband and Ellie,
We lost our daughter Eleanor just over six months ago, it was a totally normal pregnancy and initially an induced but normal delivery. She was damaged during birth and died a few hours later. I miss her and the future she had every minute of every day.
I so wish that you and I, and all the other mothers and fathers did not have to go through this.
But it is our reality - it is our daughters' story and now ours too.
For the first few weeks I managed to get up and recover physically from the emergency c section but a few weeks later it was incredibly hard.
life seems rather pointless and people stop mentioning her name so much. However there are good days and we have to take what we can get. Be very gentle with yourself and only too what you feel you can, gradually you will be able to do more.
Please look after your relationship with your husband, I found it very easy to push my husband away but managed to stop myself.


Thinking of you all tonight

KE
June 16, 2017 | Unregistered CommenterKE