I haven't been here for a while. I thought I was getting "stronger", living life again. For those who don't remember me, my water's broke prematurely at 23 weeks and I gave birth to a beautiful baby girl exactly one week later. She died after 23 hours. I'm trying to steer clear of words that disillusion what has happened. My daughter isn't lost, she's dead.

I thought the best thing to help me "move on" would be to help others in their grief. So I signed up to volunteer with an organization that offers support groups, and took the required training. Well that was a mistake. All of my emotions have resurfaced. I never dealt with my anger (and I have so much of it!), especially towards my family and how they dealt with our loss - sorry, my daughter's death - and now I find myself not even able to talk to them. I have distanced myself completely.

I don't know how to cope with all of these unresolved emotions. I can't discuss them with my family, they have only recently begun to heal, and I don't want to make things worse. I just feel so raw. Like I could just split my chest open and expose the pain in my heart. It's been just over 10 months...and I was doing so well, or so I thought.

I guess I'm wondering how others have dealt with anger. Any insight would help. And to be honest, I need something more than deep breathing and exercising - I've done that - I mean the long-term anger, the stuff that sticks with you and makes it hard to forgive.

I'm in a similar place. I'm 13 months in, I was doing 'great' for a long time - being sensitive about everyone's needs, getting things done, making sure my five-year-old is not too affected by Nadia's death. But this terrible anxiety wouldn't let go of me, and eventually the waves of fear started hitting me in a completely uncontrollable way, sometimes turning into long sobbing episodes.

I started psychotherapy only recently, and slowly, the anxiety is going down and turning into anger. Mostly at my husband, for not engaging with how I'm feeling. He was away for Nadia's first year anniversary and he forgot about it and didn't contact me. I was completely floored by the pain, and I never felt so alone and abandoned.

I'm trying to somehow integrate Nadia's existence into our lives - not because she exists anymore, but because she had a huge impact on me - but I am not getting any assistance in this. If I mention how other people interact with the memory of their child, all I get in return is cruel jokes about dead children. I have no cultural guidelines, I am not religious or fond of rituals, I don't know what I want except someone to lean on when I want to think about her, and all I am getting in return is this dismissive stance. It is one thing that he has moved on and doesn't think about her, but entirely another thing to not support me in my desperate need to have some space in which to keep Nadia's memory alive.

So for me, the anger is welcome, if extremely unpleasant. Finally I'm not focusing it all inward. But going through it in psychotherapy was really essential. I am a psychologist, I'm full of insights when I put my mind to it, but knowing and describing is not enough. I need someone to lean on and for the moment it's the therapist, with the goal of eventually getting some of it from my husband. I don't know if that is something that would work for you, so I am not going to recommend it outright. Just wanted to say that your problems sound familiar.

Hi Ana,
I remember you and Nadia...I don't think I ever replied to any of your posts, it was a little too close to home for me at the time, but I found your journal article in the British Medical Journal. It was a hard read for me as we also made the difficult decision to have palliative care for our daughter, but we weren't supported in our decision. Even now, I still worry about the backlash and judgement because we chose (or rather, I chose and my husband supported my decision) against resuscitation - there is a very strong narrative in western society that parents (especially mothers) should do everything they can for the survival of their baby. That babies should be given the opportunity to "fight" for their life. I don't judge parents who decide on intensive care, I know how strong the desire is to keep your baby with you. There's a reason why they make you decide before giving birth, because they know the moment you see your much loved baby that you'll do everything you can to keep them with you.

We didn't want her to experience any pain - immediately following the birth or at any other moment in her life. My decision wasn't a maternal one, it was very much based on the best medical information available to me (which I had to research myself since the hospital gave us a dismal chart with unreliable statistics from a very small sample and didn't take into consideration any of our individual risk factors - our daughter was especially small for her age and didn't have any amniotic fluid for a week, we later found out she had stopped growing somewhere between 20 and 23 weeks). Anyway, I just wanted to let you know that your story really resonated with me, and I relate to so many of the questions and thoughts you experienced. So thank you for sharing.

I'm so sorry to hear you've been going through a difficult time, and that you're not feeling supported emotionally by your husband. I'm not religious either, but definitely have the need to continue a relationship with our daughter. We received a lot of support regarding the loss of our baby girl, through private sessions and then in a perinatal bereavement support group. There was a huge emphasis on finding ways to commemorate our babies and to identify as their parents. I'm wondering if there's something similar in your area? You mentioned Helen House, do they offer bereavement support? It was incredibly difficult for my husband to come to the support group and he really didn't want to, but in the end I think he's grateful and it certainly improved our communication. That being said, I'm also learning that you can't control the reactions/emotions of others so if your husband's not on board then try to do what it is you need to. Engage in rituals to honour your daughter in the way that reflects your needs and your relationship with her. You are her mother and you love her. Nadia was here, you gave her a safe and loving environment inside of you and you did all that you could to ensure her comfort and care.

....As for me...I think I definitely need one-on-one counselling which I never received. There are so many losses attached to our daughter's death that I have yet to deal with. Like you, I've been so concerned about everyone else and how they're coping that I've neglected myself. I definitely hear you when you suggest finding someone to lean on. My husband tries, but I think what I really need is someone who understands the complexities of my family (mental illness). It exhausts me just thinking about it, but I know it's what I need to do. Thanks.

I too have a lot of anger right now. I often find myself very jealous of others lives- even those without children at all since they can still have a family without experiencing a great loss. And whenever I talk about some of the raw emotions, like anger, everyone (who isn't in the babyloss community of course) almost scolds me or makes me feel like I'm crazy or selfish. I was complaining about one of my friends who hasn't called me once since we lost our son (over six months ago), and the persons response was that she probably doesn't know what to say and she's just really busy with work. Like this is supposed to make me feel better or more sympathetic with her shittiness as a friend. Therapy is helping with the anger- having someone to tell me I'm not crazy and that my emotions are normal is comforting. Even if I have to pay them to do it. My situation was different from both of yours since we actively terminated our pregnancy, but I have a lot of guilt over not pursuing very aggressive medical intervention for our son who had a birth defect where he had no kidneys. There is a lot of pressure to try everything as a parent and sometimes I ask myself what not trying means for me as a mother. Although then I look at some of the Facebook pages of the babies who tried and didn't make it, and seeing those pictures reminds me of what our son didn't have to endure. I'm sorry you are feeling this way, and I hope some day I will be able to be happy for others without this unresolved anger and jealousy popping up.

As far as constructive suggestions for dealing with anger (just ended up on a rant instead):

1) therapy
2) integrating our babies into our lives like you are doing. I signed up for the holiday ornament swap which someone on here posted about, which is giving me a constructive way to think about and engage with the memory of my son. Sounds like you tried this and it may have backfired, but I would suggest that you stick with it and see if you can build some good relationships through it. I also bought a really nice picture frame with my baby's monagrammed initials. It was sort of a special gift to him and to me. His picture is in it and it sits on my nightstand. Ana- maybe this would force acknowledgment or discussion with your husband?
3) spirituality and religion. This was recommended by another babyloss parent (dad, actually). He suggested seeking spiritual guidance. On some level, I think I am searching for institutional forgiveness for our "choice" (even though I have never been religious in my life).

Hope this helps.

Thanks for the suggestions Abby, and I'm so sorry to hear about the challenges you're facing as well. I really struggled with identifying as a mother because of lack of support with the decision we made. It saddens me to read your post knowing that you have experienced similar feelings. I've come to the realization that as parents we do what we think is best with the information provided and based on our own personal views and values - much of what was passed on to us from our own parents/family. You did what was right for you and your baby, no matter what decision we make, it takes courage to hold true to what feels right for us and our family. You are a good mother.

I still feel angry/jealous as well. For a while I'd convinced myself that I was happy for others but then all of these emotions resurfaced. I've had to "unfollow" several people on facebook - I seem to go through this endless cycle of being ok with seeing baby photos, and then feel immense sadness/anger/jealousy...and then inevitably guilt. Grief is damn exhausting!

Grief is exhausting indeed...

For the moment I don't want to pressure my husband into coming to group sessions (in fact I'm a little ambivalent to them myself). I think his issues with surrender to connecting with others run deeper than this, and connecting to a baby who 'abandoned' him before he ever really got to know her is a bit too much to ask. But slowly, I hope to get some space at home to interact with Nadia's memory without feeling judged for it. It's just a more painful and prolonged process than I can deal with on my own.

Yesterday my son said how, if Nadia were alive, then, once he's big enough to be an astronaut, he would have taken her to outer space. My husband first only commented on how it's a very complex though that our son was expressing. Then a few hours later, he commented how our son would like to be a big brother. And I was thinking, no, he is expressing that he actually still feels like the big brother of Nadia. It was not a wish for some abstract future sibling. This is a small and innocent example of my husband's denial of our connection to Nadia, but there are many, and it just grates on me. But we have finally started to talk a bit about it, so at least there is no growing resentment. Long road ahead though.

Your comment on unforgivable events resonates with me. I was very much hoping to avoid those, but I haven't managed to. I'm not sure how that will evolve.

As for a therapist, it's very important to find someone who is the right fit. Sometimes they list their personal areas of expertise on their websites, which is really helpful. My own therapist really knows what she is doing, but I know others who don't know their way around death. In general it's first a decision between a long-term investment or a quicker, more surface-based therapy, and after that it's usually best to go to a recommended person. In any case I find it very helpful, and I am hopeful about the future.

The anger is extremely prevalent for me right now as well. I think the holidays have added to that but also, it's just that I'm so so angry that this happened to us, to our daughter. I went in to premature labor on August 15 2016 due to a complete spontaneous placental abruption at 23 wks 3 days (no known cause, even after sending the placenta to the lab) and my water also broke. Our Evelyn lived 8 hrs 43 min. Our daughter was conceived via IVF (our 4th and final attempt) after 8 years of battling infertility. The anger is so raw and so real. It's "only" been 15 wks since she passed away (I can so relate to feeling frustration over the word "loss"), so our emotions are still hovering very close to the surface, but the intensity of the anger took me by surprise at first. But, it makes so much sense. Why wouldn't we be enraged by what has happened? Our children were taken from us, far before their time, and if you've struggled to conceive or don't have any other living children or have had more than one child die, that loss can feel especially acute because you wonder if you'll ever be a parent to a living child (or if you'll ever give a living child a sibling). I know I wonder if we'll ever be parents to a child here on Earth quite frequently these days and it absolutely adds to the level of pain and hopelessness I feel.

As others have suggested, therapy has been helpful, and I agree that it should be someone who specializes in grief. My husband and I go to therapy once a week, and it works well for us as it validates our feelings and experience as bereaved parents. I've read a few grief books specific to child and baby loss. At first, that helped me feel less alone but I've kind of drifted away from that in recent weeks. Group therapy is offered in our town but it's a very small gathering and we've been hesitant to go and share our experience with others, afraid that it will seem like a grief competition of sorts, like who has had it the worst...I don't know, it's just something we think about it because we don't want to feel like our grief is less than someone else's and for us, we don't have any living children after so many long years of trying so we know it would be challenging in some ways to relate completely to another couple who had lost a child but who also had living children. But again, that's just us. Finding ways to integrate Evelyn in to our life has been huge. We try to do that as often as we can. Just a small example, I made a pecan pie for Thanksgiving and arranged a large 'E' with pecans on the pie's surface. Other examples: We brought her urn to our Thanksgiving dinner table and set it at the head of the table with a tea light burning right next to it -- we just weren't okay with picturing her spending the meal alone in her room. We bought her a stocking this year and plan to hang it alongside ours each and every year. We bought a small Christmas tree to place beside her urn in her room. I organized a baby blanket drive to donate to the NICU where she fought to survive and ultimately passed away, as doing something meaningful with our anguish has helped us feel closer to her. Nothing is as it should be so we work to create a reality that we're comfortable with, even if others may find it odd. I couldn't care less, if it feels right to us, we do it. I think that's the best advice I could give, really, to create a reality that feels the best to you. Your heart is broken, your dreams shattered. What feels right to you is what you need to do, regardless of what someone else may say about it. I'm sure people would think it's morbid that we brought Evelyn's urn to the dinner table on Thanksgiving but you know what, their child hasn't died, so they don't get to judge.

Sending you hugs and lots of support. I'm so sorry for our shared grief and sorrow, and, in honoring the terminology you prefer, I'm so very sorry for the death of your daughter. You're not alone.

Thanks for sharing Melissa, and I'm so sorry your little Evelyn isn't with you but find the ways you incorporate her into your life absolutely beautiful. We're fortunate to have many opportunities to commemorate our daughter as well, I'm starting to care less and less about what others think and whether they find our need to remember her and continue a relationship with her strange. I really appreciate your words of support, and your honesty.

I can understand your hesitation with joining a support group, and my husband and I were incredibly fortunate to receive private counselling before joining one. I think it was really important to have the opportunity to share all of thoughts and feelings before hearing from other parents. It's impossible not to experience comparisons with others, but I think in the end we all came to the realization that we shared very similar challenges and that more than anything, we provided support to one another. BUT, you have to be ready to share, ready to hear what others are going through, and willing to connect.

At one of the support groups I went to, they asked the question, "Whose grief is the most painful? The most difficult?" and the answer they gave was, "yours." It's human nature to compare, but when you're in the thick of it, no one's grief is worse than your own. And we can all relate to that.

Abby--I am sorry others have made you feel guilt about terminating your pregnancy with your son. After my son died at birth with a chromosome abnormality, I promised myself I wouldn't let any more of my kids suffer through that. (The abnormality may recur in any future pregnancy.) We have a healthy younger daughter, but I have terminated two pregnancies since we had her, around 13 weeks. I'm so wrecked from having lost these little ones, but I don't feel like I really had a 'choice.' You hit the nail on the head in noting what your son "didn't have to endure." Never again.

Mother to a Wild Rose--what journal article? That would be a really interesting read. And I love your name; that's how I think of my younger daughter (the one I terminated). She was really active and I think she had a strong personality.

JM, I have written a few things after losing Nadia. The British Medical Journal article is a short one, on medical communication and palliative care:
http://www.bmj.com/content/353/bmj.i2846

I also have a longer piece, which goes into the decision making:
https://aeon.co/essays/my-daughter-came-out-they-handed-her-to-me-she-was-dead

And as long as I'm advertising my writing, there is also this, guest blog posts that I write every so often:
https://shoeboxfullofmemories.wordpress.com/category/guest-post/

I hope you find comfort in some of it.