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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 > the harshest words

"Can you imagine if she had lived - how HORRIBLE that would be?"

My partner, her father, said this to me the other day.

He was very clumsily referring to my decision to allow her to die instead of keeping her alive with her chest cut open, hooked on machines doing the job of her heart and lungs. I don't doubt that my decision was the best one, but I can't speak/think lightly about having to decide.

Then he made things worse by saying: "Well, just think about it. Imagine what it would be like to have a child with a terrible medical condition who then dies? Wouldn't it be horrible?"

As if that's not exactly what happened. As if it isn't horrible.

It hurts so much. It hurts because in all these 15 months, I haven't managed to communicate that I miss her. That I love her. That if I loved her dead, I would have loved her sick, I would have lover her disabled. That this love is beautiful, that it has value to me.

It hurts because he sees no value in getting to meet her.

It hurts because, had she lived a little bit (and if I had agreed to a C-section, she might have spent a few minutes or days with us), then maybe I wouldn't be so alone right now. Maybe some other family member would have experienced her alive. Maybe some of our friends would have seen her. Maybe she would have existed to someone else but me.

I've read many lines on insensitive things people say. I found that I can easily forgive/explain/understand almost everything, up to now.

I have enormous differences with my partner at the moment, and, while I don't mind that he is in a different place, I can't cope with how little he gets me. I can't understand how, with all my attempts to communicate my state, he keeps showing me he doesn't really understand that I'm grieving for my child.

Is there anybody else in the same boat? Are you having trouble communicating? Are you left hurt, do you feel alone in your relationship? How do you cope?
January 9, 2017 | Unregistered CommenterAna
Ana, I don't have any wisdom or sage advice to give, I'm sorry for that. But I just wanted to let you know that as alone as you may feel in your relationship at home, you're not alone here. We see you and hear you, and we sympathize and empathize with your pain, your suffering and your loss. I so wish that you didn't feel alone in your relationship with your partner and can only imagine how further alienating and painful that must be. Perhaps you're already seeing a therapist/counselor but if you're not, that would be my suggestion: a mediator, someone who can maybe help the two of you better communicate and arrive on the same page. And if he's not willing to go, I'd encourage you to, on your own. Sending hope for peace in your heart and comfort, and sending love and virtual hugs.
January 9, 2017 | Unregistered CommenterMelissa
Oh Ana, I'm so sorry for all of this. I'm more than five years out and my son was born still at 31 weeks. You put it so well when you said that had she been born alive, maybe she would have existed to someone else but me. I feel the exact same way. Like I am literally the only one in the world that truly knows my son existed. My husband is much like yours and NM's. He never really grieved or bonded with the baby so when he was born still, it was kind of like "oh, well, moving on. What are you so upset for?'. The first year was rough. He couldn't take me talking about our son all the time and suggested I find a counselor to talk to. I did and saw her nearly weekly for two years. After that, we rarely talked about it at home. Then, this year, it was the fifth year anniversary of our son's death/birth and it hit me hard. I was so angry that I had to suppress my grief and love for my son in my own home. Things came to a head so to speak and we nearly separated. We finally talked everything out and considered seeing a marriage counselor. We haven't done that yet. I don't think we've resolved everything but some things have gotten better. It's so hard though and I don't have a lot of advise. Everything NM said above is pretty much the same as for my husband and I. I could have written that same post. I think it is very common to experience this given the vast difference between men and women and how we each grieve. It's so frustrating for us because we had such a physical and emotional connection to our babies and men don't get that. They can't, they don't have the ability to carry a baby within them. My husband admitted that he doesn't bond with the baby until it can almost talk (we have had two children since). Anyway, it's hard. Keep communicating and it does take a lot of understanding to make the relationship work. We are all here to support, understand and help, even if no one else is/can.
January 10, 2017 | Unregistered CommenterEjb
Thank you all for responding.

When I complain about not being supported, people often tell me that men are like that. It's hard for them, they don't know how to help, they want to fix things instead of being with the pain, they are in denial, they grieve differently, etc.

I'm just fed up with this societal stance that men should be off the hook when it comes to being supportive.

From my point of view, I am experiencing a deep crisis, and my partner is doing nothing to adapt. He is trying to push through, keep life normal, when it isn't normal. It's breaking me, over and over. And it's harming our relationship. And of course the dramatic turbulence of grief will go down over time, but my memory that he wasn't there for me will stay. I just don't get how he can still pretend as if he has no role to play in this, and how people can tell me this is just how things are with men.

I'm feeling completely defeated.
January 11, 2017 | Unregistered CommenterAna
Ejb, I just wanted to say that my previous post was not intended as a criticism of yours. I was just ranting in general, at no one in particular. At life as such.
January 11, 2017 | Unregistered CommenterAna
Ana- I wanted to respond since I have found so much comfort in your writing. One big difference between me and my partner was that he was ready to try again right away for another. I understand this reaction but I was completely aghast that after everything we just went through emotionally, and me physically (labor and post partum), that he thought having another right away was a good idea. I have a picture of Luke on our nightstand and I have asked my husband if I can have an hour a few times a week where we go over everything again to my heart's content. This has been huge for me and helps him since he knows when it's coming (usually before bed).

I'm sorry you are having so much trouble with your husband. That's especially difficult since he is really the main person who went through the experience of having Nadia with you. And even though she was born still, it is his daughter and the grief belongs to him too.
January 11, 2017 | Unregistered CommenterAbby
Hi Ana, no offence taken. I completely understand. I've lived with what you are feeling for over five years now. We haven't figured it out yet. At least after all this time, we've started the conversation. For me though, it's hurt like hell and that's on top of the pain of losing our child. It's been difficult and I thought we had a bulletproof relationship. Clearly not. Anyway, I've accepted it all as nothing I have any control over. You are probably braver than I am so do what you need to do to get your relationship through. All the best!
January 12, 2017 | Unregistered CommenterEjb
I suppose that most of my outrage now is because I might have chosen differently if it was just myself and Nadia. I could have cared for a deeply disabled child, I might have gone further down that path with her. I might not have decided to let my daughter die, if my family's happiness wasn't at stake.

Of course, her situation was so dire that it wouldn't have helped to decide differently, but at the moment of making the decision I didn't really know that. I made the decision for all of us, and I had to make it alone. My decision had my husband's and my son's wellbeing as the main consideration. I let my daughter die, more for them than for myself.

And now, after that enormous sacrifice, I am told how horrible it would have been if she had lived.

As if I don't already know that I am the only would who loves her, who would have loved her deeply, whatever her state.
January 12, 2017 | Unregistered CommenterAna