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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 > I'm sorry

15 months ago, I let my daughter die. It was a situation many people here have encountered – a bleak prognosis, treatment options you wouldn’t wish on your worst enemy, a life that would be prolonged only a little bit with the price of experiencing much pain and discomfort. I had to decide on the spot, but everything I have since learned about the condition makes me believe it was the best choice.

Right now, I do not grieve for my terribly sick daughter (who would probably be unable to communicate had she survived), as much as I grieve for the perfect little girl she would have been just ‘underneath’ that point mutation she carried. I imagine her whole, because to me her complete helplessness as an infant feels natural and good. It would have become dreadfully difficult had she continued to be just as helpless as she grows, I know, but for the moment I still imagine her as an infant.

And I feel guilty. Guilty for not trying to save my helpless little girl. Guilty for deciding to let her go. Guilty for discarding her from our family because she was imperfect. Guilty for not going all the way with her. For not giving her a chance. Guilty for conceiving her, and carrying her, when I wasn’t ready to keep her.

I know, I shouldn’t feel this way. I spared her a lot of pain. I spared my husband and son from forming this deep bond with her and then losing her. I spared myself a life spent caring for a severely disabled person. It would have been hopeless anyway. But I still feel guilty, because she was mine and because I love her so much.

And I don’t want to hear that I decided well. That it was the least terrible of options. I don’t want to hear that the guilt is not something I should feel. I don’t want to hear that she would have suffered otherwise. I don’t want to hear that she spent her short life experiencing only love. I don’t want to hear that it was the best choice for her.

Instead, I decided to stop appeasing myself with these oh-so-rational thoughts. I decided to try and hold on to this guilt instead, and to see where it takes me.

And it took me, immediately, to the need to tell her that I am so, so sorry. I want to tell her she was perfect and that I failed her. I want to offer my sorrow to her, my regret, the torture of my decision. I want to tell her she was helpless and I should have protected her. That I will always carry the weight of deciding to let her go. That it changed something fundamental about how I see myself.

But she is not there to hear my words. I can imagine apologizing to her (and the thought gives me peace), and for the moment I will continue to do that every night after I close my eyes. I imagine stroking her, talking to her. And saying goodbye all over again. It hurts beyond words. But it feels like something I need to do.

I wish there was more. I imagine a dessert, and I imagine myself at the centre of a circle of people surrounded by a circle of fire, shadows playing on our faces. I imagine a drumbeat and chanting. I imagine being asked how I feel, and saying I’m sorry. I imagine being heard. And perhaps – perhaps! – I imagine being given forgiveness, just in case I might be ready to accept it some day.

But across from me sits a great nothingness.

Do you cling to your guilt sometimes? Have you tried to find a way to apologize to your child? Was it helpful? How did you do it?
January 15, 2017 | Unregistered CommenterAna
Oh Ana, What a beautiful and thoughtful writer you are. And what difficult decisions you had to make, under the most heartbreaking of conditions. I understand not wanting ppl to talk you out of the guilt. When ppl do that to me, I feel like I'm not being heard, like they did not pay close attention to every reason I just listed of why I feel so guilty. Like it would be a hell of a lot easier on everyone if I would drop the guilt and start dwelling on something healthier instead. I hate being told that all she knew was love, as though that makes it okay (and it also makes me want to tell every mother everywhere, "Hey! If you want your baby to only know love, you can wish for your child to die before having a real life on this side of the womb, too! It's so great!"). I mean, come on. I've been helped most by those who will wallow in the hard thoughts with me and talk to me about them and think them through with me, not just say "You didn't do anything wrong" as though that solves everything. I cling to my guilt like a shield to the reality of this pain. I replay the final three or four days as though it's a DVD in my head and only has fast-forward and rewind buttons. I think of every possible way I could have saved my daughter had I just done this or that, or been more aware of this, or scheduled an appointment on this day, or had the induction on this date versus the later one, etc. When I held my dead child, I never said or even thought "I'm sorry." In that brief time with her, I did not actually sit there thinking I had been the one to do anything wrong. It felt more like the universe and forces of nature had all conspired against us, but not like I was at fault. I was so dumbfounded that she had died, that I couldn't even figure out (at the time) how or what I could have done better or differently. I just felt confused and sucker-punched. Then when I got home and in the months to follow, I came up with a handful of alternate realities that would have (in my mind) resulted in a live, healthy child, and I replayed those and wondered about them all the time. I'm over seven months out, and I still do this every day. I do find it interesting that the earliest days didn't include guilt, but the grief for the long haul has had guilt as a cornerstone of it all. I've never really "apologized"; I'm afraid I wouldn't even know how, since I am a pretty literal person and I know my daughter is dead. If I wrote a letter, I realize I cannot hand it to her, etc. If there is any kind of spiritual afterlife and she has any awareness of her mother and of my heart, then she would know. My heart aches in a way I did not know was humanly possible, with the guilt that perhaps there was ANYTHING I could have done to improve her odds, even though I didn't know it at the time. I've raked myself over the coals in every way possible. I'm afraid I can't bring consolation, but I don't think that's necessarily what you're looking for anyway. I can only bring a shared sadness and an understanding of your pain. This is the worst. I hate it for you and for me and for our little girls. Hugs. xoxo
January 15, 2017 | Unregistered CommenterNM
Thank you, NM. I am indeed not looking for consolation, just for some understanding, which is exactly what I got from your reply.

I am not religious/spiritual either, and I have only recently developed this need to somehow conceptualize her. It is metaphysical I guess, but I also kept wondering what sort of psychological role it's going to play. Obviously it's part of my own process. I think all we need for such communication with someone non-existent is the capacity for abstraction, and the capacity for connection. The rest is in the mind. So I have given in to the irrational, and have started thinking about this part of me as 'her', even though I do not really think she exists in any way. It gives my emotions some focus, it somehow helps. And after all, parental love is supposed to be at least a little bit irrational. Nothing unusual there.

(I have written about these metaphysical thoughts recently, about what it means to exist. If you're interested you can find them here:

As for apologizing, if I'm speaking in my rational voice, what it really involves, psychologically, is carefully listing all the things I feel guilty about, and then giving them a measured look. Rounding up the demons, so to speak. This instead of feeling crushed by the guilt, feeling dazed by it.

And eventually, it will of course be about me forgiving myself. (Maybe) I am simply using 'her' and the idea of a community with rituals in place just for my purpose as props. It's just me and my pain, but that feels scary and difficult to dig myself out of.
January 15, 2017 | Unregistered CommenterAna
Oh Ana, we have been in such similar situations. I had such terrible guilt after we let our Shelby go. It was soul crushing. In the end I just had to keep plodding along. I don't think it's anything you can DO so much as it is TIME that eases the guilt. It has been this way for me anyway (coming up to 5 years on from saying goodbye to our girl). I'm sorry I don't have more helpful advice, thinking of you.
January 15, 2017 | Unregistered CommenterShelby's Mum
I write out what I want to say and then burn it outside. I let the ashes of my words follow the ashes of her body. It works for me.

Before my daughter died and I had lived with that knowledge for a few years, I didn't know that a mind can hold completely opposite truths in it. The paradox of knowing I killed my daughter and knowing I did not kill my daughter. Anymore, I just let both thoughts do what they want. Turns out it doesn't matter how and why she died. She is always still dead, no matter how tangled or sensible my thoughts and beliefs are.

Wishing you all peace in this coming year.
January 16, 2017 | Unregistered CommenterJill A.
I, too, was faced with life and death decisions. I was a high risk pregnancy which turned out to be fraternal twins. We discovered after the second ultrasound that one twin probably had a trisomy disorder and would not survive. Then, at 17 weeks, I got listeria and that weaker twin did not survive anyway. Added to that, my water broke and the surviving baby went 9 weeks without amniotic fluid before being born in distress at 26 weeks. In the early days of NICU, we were faced constantly with the prospect of discontinuing care if something concrete were discovered that would compromise Grace's quality of life(we are older parents and didn't want her to face life alone if she was not able to function adequately). Doctors always left the option open to us but were never able to definitively tell us she would have any crippling mental or physical disabilities, so, after each hurdle, we carried on. After seven and a half months, Grace was discharged from hospital, and continued to thrive to the point that she was not followed by any clinics except one for a slight bowel problem that wasn't supposed to be anything serious. She was a happy, smart three year old until December 28 when she was admitted to hospital for what was supposed to be a mild bowel infection, but 18 hours later she was gone. I understand completely the mental strain you were under to have to make those decisions, as I faced them so many times, then thought I was free of them. Had doctors actually discovered in time what killed Grace, we would have been faced one last time with that decision, and knowing now what was found in the autopsy, she would have had extreme nutritional problems that would have probably not allowed her to live long, anyway. All we can do when we think of it is to know that we did the best we could, and it was done for our baby.
March 27, 2017 | Unregistered CommenterPaula