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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 > 7 years on

Hi to everyone out there at GITW. I've been reading a few of your recent posts and it is very comforting to know this community still offers a place of safety and comfort for babylost family. I haven't posted for ages but I used to hang out here a lot. To each of you I am so sorry for the loss of your precious child. My heartfelt condolences.

It is my daughter Salome's 7th birthday tomorrow. She was born at full term, but lived only 2 1/2 days before dying of early onset sepsis. Of course I expected my grief to swell this week: it always does as it comes close to the anniversary, like some sort of black cold king tide coming in. However, the intensity of my grief this year has stunned me. Today, I'm physically aching, the muscles around the bottom half of my face aren't moving as fluidly as normal, I can't problem solve, I'm really fatigued, and it's hard to give eye contact. I've had a week of poor sleep and nightmares. No appetite apart from chocolate and tea.

The intensity of the grief isn't the main problem though: As shithouse as I feel today, as bereft and lost and heartbroken, I can remember enough to know it's not anywhere as intense as it was in the first 12 months / 2 years. I'm not saying that to minimise the grief of anyone reading this, or to overly distance myself from where you might be at. I just want to acknowledge to all of you and remind myself that my grief has actually travelled "the expected course". That is, my grief for Salome shattered me, consumed me, and bought to my life a level of pain I hope I never feel again, but that slowly over time my grief for Salome has been plaited into everyday family life for me, and at this stage my life is genuinely good.

The problem today is not the intensity of the grief so much as the growing gap between the depth of my grief today and the life I am now living. It has become harder to make space for the grief as the years have gone by. It is 100% up to me to organise to have my own needs RE support with this grief, and as it gets closer to Salome's birthday my organisation skills and assertiveness skills flatline. Every year it gets harder to bring Salome up in conversation, harder to ask for people to mind our kids for an hour if I am struggling. It's the same road I'm walking but it's lonelier now. Back when Salome died we were very fortunate in how well we were supported. But life has moved on. There have been other major losses in our families and social groups since then. The many good kind people we know are supporting others at the moment, and that's how it should be. There will be no flowers delivered tomorrow, so I'm going to buy some myself. There will be no meal delivered to our door so I will buy takeaway for us. I get why this happening and I am mostly fine with it. I don't mind so much that people have forgotten our grief. I mind very much that people have forgotten our daughter.

And that's the heart of it I think. Who is it that I fear has been forgotten? Who would our Salome have been at age 7? Salome has 3 surviving siblings and 3 cousins. Who would she have been like? What energy would she have bought to our family? What annoying habits would she have added to the mix? Today I am grieving the absence of 7 year old Salome. The grief is never done. It keeps unfolding. The Salome-shaped gap is different every year.

I think one thing that is making this year's grief so tough is that our youngest is about to start school and a chapter of family life is ending. We have had kids at home for 12 1/2 years and that ends next week. After Salome died I had no sense of her presence with us, unlike my husband who had many moments of connection with her (don't start me on how hurtful and unfair I found that!). As I approach the day when our youngest starts school I am starting to yearn for that sense of connection with Salome again. Actually I'd like Salome to show up in a shower of fairy dust, a Tinkerbell / baby hybrid who can talk, and tell me she is OK, it's not my fault she died and that she is with us no matter what. Not likely.

I'm surprised at how my subconscious changes my fears to match the maturity of my surviving kids. Now that our youngest is 5 I no longer fear croup. We have a 12 year old now, and so my nightmares have switched to teenage suicide. Nice one, subconscious. Top marks for adaptation. It's still the same fear: any of my kids could die and I wouldn't be able to stop them. Just different wrapping around that.

I'm also surprised to find myself thinking more this year about what the day of Salome's birth was like for me. Up until now, when I grieved the day of Salome's birth it was more about how awful it was for Salome, for my husband, for Salome's siblings, for the grandparents. Over the years I haven't thought much or talked much about what that day was like for me. Maybe there is a bit of work there that needs to be done for me.

Tomorrow night we will make a birthday cake for Salome and have take away Thai for dinner at her cemetery near the beach, as we always do. There are storms forecast but we will go anyway. 7 years on and it is still totally fucked that our beautiful daughter is dead.

Peace to you all, and condolences of the loss of your precious babies,
January 25, 2017 | Unregistered CommenterSunrise
I think we mourn our children as the babies we lost and again as they grow. We watch them grow and we miss the toddler, the seven year old, the high schooler, the young adult. My daughter would have turned 26 this year. I still wonder what she would be doing, what she would be like.Like you, my life is good. It has been/is filled with love and laughter and joy and pain and anger and boredom. I've got it all and it has been wonderful. Still is. So how do I explain to friends that, no, I can't meet for lunch on a given Wednesday because the following Saturday would be the seventeenth anniversary of my daughter's death and I am not going to be me? I'm not going to be able to pretend to be me and to pretend to be relaxed and at ease. *sigh* It sounds stupid even to me and I'm the one living it and I know it is true.

There is always that hole in life, in a photo, in a school, at the park. Always a hole where our child should have been. It hurts.

I found the first decade of grief to be very similar to a second adolescence and it was just as hard as the first one. So much time trying to figure out who I was now, how I should live, what I should value. Only to have all the new knowledge fall apart again and again and again. Learning to handle my grief and doing a good job of it and then - WHAM! She should have started preschool and I have to adjust all over again. I would tell myself the story of my grief from the very beginning and go over all of it right up to the present. That sounds a little bit like what you are thinking of. Some years where given to learning to keep quiet, some years were learning to speak out. Sometimes I needed to learn how to make her memories a part of my life, other times how to make her memory a part of our family history. Some years were about dealing with pain, other years about loss.

I don't have any good advice for you, Sunrise. I recognize what you are saying and I agree, it hurts. Bottom line is, the babies should be here, not dead. That never changes, does it?
January 26, 2017 | Unregistered CommenterJill A.
Love to you Sunrise and Jill A.
My baby boy would be 2 1/2 today if he had lived longer than three days.
I am not as far out in the journey as you are but it makes perfect sense to me that we suffer the loss of our children in a million different ways for as long as we live. Everywhere is a reminder and even though it hurts it seems good and right to me to be reminded. I never want to forget my son. I miss and love him so much.
Thank You for sharing your thoughts and feelings here.
January 26, 2017 | Unregistered CommenterEm
Oh Sunrise, thinking of Salome today on her 7th birthday, something you wrote really stuck out for me "I don't mind so much that people have forgotten our grief. I mind very much that people have forgotten our daughter" how very true. It's been over three years now, we are entering the fourth since Zia died and I can relate so much to this post.
January 27, 2017 | Unregistered CommenterJo-Anne
So sorry that Salome is no longer with you. We lost our baby boy to sepsis as well and it is just devastating. Peace and love to you, I hope you had as nice day at the cemetery with your family as possible.
February 2, 2017 | Unregistered CommenterCristiane
Dear All,

Thank you all for the kindness in your comments. To read your replies on the day and in the days after gave me a huge amount of comfort.

Jill A: I'm so sorry your daughter died. Thank you so much for replying so quickly to my post: that alone really helped me steady the ship on that day. When I read your account of not being yourself every year as it approaches the anniversary of your daughter's death, I think "Of course". It makes sense to think that's how it is for other bereaved parents.... But it is harder to accept it when it applies to me. How weird. And I absolutely agree: even apart from the changing gap in the family as I grieve this loss over years, each year the grief seems to have a different flavour. This year I would say has been sadness and powerlessness.

Em: My condolences on the death of your beautiful son. I also find some comfort in the sadness and I am in some way relieved when the sadness shows up. I think that's because my grieving Salome's loss has been the only form of parenting I ever got to do for her. The grief is awful and intense, but there is an element to it that's a bit like releasing out of a yoga pose that I've held too long. Maybe it's releasing the tension of having to act as if the world is a safe place, at least for a few days? I dunno.

Jo-Anne: I am sorry that lovely Zia died. I hope your passage through the next chapter of grief is not too hideous.

Christiane: Isn't sepsis an absolute bastard of a thing to lose a child too. I am sorry your lost a precious child to that stupid arsehole of a illness pathway. For us, our Salome was born full term, an easy labour, a healthy birth weight but something was wrong as soon as she was born. The agony of having the biggest healthiest looking baby in the NICU but having the worst prognosis and outcome. I am so sorry for the loss of your precious baby.

As for me, the week continued to be much harder than I had anticipated. We did indeed go to the cemetery for dinner and the rain held off when needed. It was a beautiful night and a gorgeous sunset over the water, and being there was hugely comforting to me. Another thing that helped was going to see the movie 'Collateral Beauty". I loved it. I thought it was a great depiction of parental bereavement, particularly a less "expressive" and more internally corrosive version of grief more common in men I think. I thought Will Smith captured the day to day agony of being a bereaved parent well.

Peace to all of you and my heartfelt thanks for your kindness.
February 3, 2017 | Unregistered CommenterSunrise