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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 > How am I to endure this great loss for the rest of my years

In two days my first child, my daughter would be 5 months old, and I am in the depth of my grief. My story is long and complete bullsh*t. My fiancé of nine years and I decided we were emotionally and financially ready to have a child and thought we had won the lottery when we fell pregnant quite quickly (my sister conceived her children through IVF), turns out we didn't win sh*t because after 35 weeks of false security I was told at my last scan that my baby had a major problem. I left my hometown at 35 weeks to go to the city, I was pretty much grieving for ten days before I had her as I was being told everyday how slim her chances were. I delivered her at 36 weeks via a very complicated caesarean, watched her battle and suffer for two weeks in the NICU before having to let her go and in the span of three weeks my life turned into a f*cking nightmare and our precious baby Tilly was gone.

A week later we had her service which was absolutely beautiful a lot of the community came it was over whelming but there was a lot of compassion for our 13 day old princess. I could write so much more about those three weeks but it's horrific and at the moment I am pretty much every new mums worst nightmare.

Support has dropped off and life is seemingly back to normal for everyone except my fiancé and I, this time last year Tilly was a sesame seed and I was about to experience severe morning sickness. I can remember every thought I had this time last year, every feeling and what I was wearing even like it's all a sick joke. I still get phantom kicks and have sinus problems that began in the third trimester and when I get heartburn or hunger pain it's like more salt in the wound.

Plus everyone around me is expecting including relatives and no one will talk to me, like they don't want to catch the 'my baby died' bug.

I have spent all night in her nursery just sobbing and wailing, one of those nights. Oh and also seems to be every day like 5 children are neglected, abused and murdered but their own parents and it's all over the news all the time even tonight they showed a baby that was murdered by he's parents in a white coffin.. I wonder if he's parents had to pay thousands to bury him.

Oh god I'm being so irrational but come on this is just ridiculous. Anyways I have been reading Glow for a few weeks now and it's really helpful and I have wanted to post on here but haven't known what to say.. my eyes are pretty blurry from crying and I'm pretty worked up so sorry for the bad manners.
January 18, 2017 | Unregistered CommenterTilly's mum
Tilly's mom,

I'm so very sorry you find yourself here. My daughter died of a grave diagnosis as well.

You've had anticipatory grief waiting for the bad thing to happen. It happened. Then, you experienced the rallying- the support and the adrenaline and the shock. And now you're in reality. Loss is so very lonely. In the small corners of the day, in the darkness of night, in the first few moments of the morning...there is just you...and emptiness.

Over 2 years out, I can tell you it will change. Not that you can look forward to that. You need to feel the pain until you're ready to let some of it go. But don't worry about that. It'll come when your heart is ready.

You've suffered a great trauma and been on a devastating roller coaster of emotions. At this point, do what feels the most right in your heart and do that. I found the most comfort in reading, writing and some therapy, although at the end of the day we power through on our own.

Know that whatever you feel or whatever you do today, it is enough.

I'm so sorry.
January 18, 2017 | Unregistered CommenterElaina
I just wanted to say how sorry I am to know you have suffered such a great loss,.and that your daughter is not with you right now.
What a beautiful name, Tilly. Is that a family name?

Right now, you are in the acute time of grieving. it is so painful, so overwhelming, almost impossible to bear.
to imagine how you will be able to feel this way for the rest of your life is way more that you can handle now.

I am years out from my losses. I remember that acute phase now, with a lot of terror and trauma. it is incredible to me that we, as humans, are expected to survive such losses. however, we do. our minds and hearts and lives are not meant to live in and stay in that acute phase of grieving forever. it changes and it is ok that it changes. for now, having your daughter's death so recent and so raw, I wish it was different, but the grief is meant to be this way, you did not have a bad job interview. you didn't sprain your ankle. you had perhaps one of the worst tragedies a human can have, to experience the death of their own child. that is huge, and while the grieving is painful, it is necessary and thankfully, it will not always feel so horrible.

I think the 1st year after was absolutely the worst of that particular uncomfortable unimaginable pain. everyone angered me. everything pissed me off. I was so sad, all the time. I hated living. I had to fake so much. I fakes being "normal" around people, and then I would go home and fall apart. but even during that time, I ached to be free of that heavy pain of new grieving. I needed to breath, away from it. I needed to feel the full spectrum of feelings again- laughter, hope, etc. you will find a balance and it is a good thing. I remember wanting to fight it. the first time I laughed after my daughter died, I was so grossed out and disappointed and ashamed of myself... how could I have laughed when my daughter was dead? but I needed to. we need the full spectrum, and eventually it comes on its own accord. it will come to you too.

I just wanted to support you in your feelings of anger and the churning stormy feelings that take over you... I think anyone who has experienced the death of a baby will have empathy and probably have felt the same things. everything hurts right now. TV, social media, movies, friends, family, even maybe things that come out of your fiancé's mouth... it all has the ability to completely turn on you. even your own thoughts! I am glad that you found glow and have been reading and now posted- so helpful. do you have a counselor or therapist? support group for loss? when the storm settles and everyone (except you) go back to their regular lives, that is the worst, most lonely part, because then you start questioning whether or not the grief is ok to feel because you are the only one feeling it (it is!) and people start to become impatient for you to "get better" and "be happy". well, sorry, fuck that. you are allowed your grief! its going to take time, and yes, it is something that will stay with you forever- you will always be Tilly's mom, and in the future, that will begin feeling less and less like a sad tragic fact and more like a loving wonderful fact, at least that is how it has been for me over time.

my thoughts are with you and your fiancé, and with your daughter.
January 18, 2017 | Unregistered Commenterss
Monday was the 5 month anniversary of our daughter Evelyn's death. I cried harder on Monday than I did on the 4 month anniversary of her passing. No rhyme or reason, really, just felt so hopeless, so empty and so gutted. You know how it is. Because the more time that passes, the more it really sinks in: she's gone. Forever. And nothing will ever change that. Like you described, less people check in. There are far fewer text messages, fewer phone calls, the cards have stopped and the emails, too. I haven't heard from some friends in months, even the ones who visited or sent flowers. I often wonder how long it would take for someone to reach out to me if I were to completely stop interacting with others on Facebook or Instagram. I share about what we're going through and people interact with those posts so I think people figure they're "reaching out"...but that's not exactly true. "Liking" my post isn't the same as genuinely checking in on us or inquiring as to how we are coping. And I only share on social media because I so desperately want to explain our pain and sorrow, so others can understand the depth of our grief. But of course, that is futile. I feel so lonely, deserted, alienated. I also think people assume that we're 5 months from the "epicenter" of the tragedy, and that we are hurting less now, that we need less support. As you know, nothing could be further from the truth. I think I feel especially vulnerable right now (and perhaps others can relate) because it's a new year and everyone around me is talking about resolutions and the positive changes they're going to make, goals they're chasing and all I can think of is how my daughter is gone and how just surviving each day is a hardship and a triumph all its own. My motto is, "One day at a time..."

This is all to say...feel what you need to feel, when you need to feel it. Grieve on our own terms, not by anyone else's. I trust (as I have been told by others who have walked this journey, including my parents whose firstborn was stillborn) that this first year will truly be the worst but it is absolutely depressing that this is our life now, and that we will need to adapt to it. The pain will "soften" over time but it will always be there. What has happened to all of us is absolutely cruel and unfair. No one should bury their child. The injustice of it all is overwhelming. Grieve on your own terms, however you see fit. Find what gives you even a moment's peace and hold on for dear life. Talk about your Tilly. We'd love to hear all about her, whenever you feel like sharing.

Grief lasts as long as long as love does: forever. And we grieve because we loved first. You grieve so heavily because you loved Tilly so deeply. I am so very sorry you have found yourself in need of this space but I am thankful it exists and hope you find some comfort here. You are not alone.
January 18, 2017 | Unregistered CommenterMelissa
"From the outside looking in, no explanation is possible. From the inside looking out, no explanation is needed." I think that's how the quote goes, you get the gist of it anyway.. thanks for everyone's support and I'm sorry you all suffer like I do.

Elaina: Your description of the process is spot on.. and man do those first few moments every morning hurt real bad. Tilly's diagnosis was a random rare as hell defect that happened during the embryotic stage.. some kids make it and some don't... in our case my baby had the severest case of it. Was your baby in the NICU? There is an article in the blog that talks about having a baby die in the NICU.. I can relate to all the feelings, actually all articles on here are relatable.

SS: We always thought our baby was a girl and my fiancé loved the name Tilly, then when we found out about her condition.. "If we don't get this baby's airway that's it", followed by "I think it's a little girl"... instead of being excited about it I collapsed onto the ground screaming and crying like a child that couldn't have their cake and eat it to, in the haze of it all I thought we needed to name her something powerful.. I typed in google and it turns out Tilly means 'Strength in Battle'.. very fitting for her battle ahead.

I don't even know how I got here, like how is my heart still beating and how has my body not shut down from the sheer exhaustion of grief and the primal actions that come with it. When I hear of a pregnancy or birth of a baby, especially a little girl, and especially from people I am close with, a demon comes out in me and I fall into another pile of anger, envy and sadness. Our Tilly was the fifth grandchild on my side and the first grand daughter on my fiancé's side.. now his brother's girlfriend has just had a baby girl and my brother's wife is pregnant.. and we are being told that we should be the ones to ring them etc.. you could safely say it's a big sh*t storm. Everyone is just waiting for us to fall pregnant again so they don't feel so uncomfortable talking to us.. hmm.

I do have a lot of support in the baby loss community, I see a counsellor and have a few older women I catch up with from time to time as well as Instagram and well here. We are definitely in the loneliness and isolation stage, my fiancé and I are together in our grief and push each other through each day. Society is a killer too.. the commercialisation, the idealistic views, I feel like ringing up what to expect and asking them to add to their app what to expect if your baby dies.

Melissa: That's exactly it.. she is gone but she is still so young. Evelyn is a beautiful name. We have never been a fan of Facebook or Instagram and haven't had it for over 2 years.. I often think I'd like to start an account just to connect with bereaved mothers and to share my story and beautiful baby. I used to always envision our future even before we fell but now I can not see what will happen in the future and that scares me. The injustice.. there's not answer to why bad things happen to good people and good things happen to bad people.

Tilly was 3kg but she had a lot of lymphatic fluid from her defect, she was 47cm long, pale pink skin, blonde hair, blue eyes, squishy lips, thick ears, a real mixture of her dad and I. She was feisty, she only wanted to hear our voices and feel our touch, anyone else she would wriggle and kick. Both our mums were by her side when we weren't, our dads and my sister were the only other family members to meet her. I saw her open one eye but her dad saw her open two and she looked straight at him.. she then got too swollen any my beautiful baby looked nothing like she did when she was born when she passed away.

Do you feel your parents understand your grief being through the loss of a baby themselves Melissa? I am so sorry for them, and now to see their child go through and loosing a grand daughter.

Thank you all for replying, your words resonate with me and help me to know I am not alone and this didn't happen because of who I am. It's so hard to accept that having a child has nothing to do with how deserving you are, they are simply handed out at random and the ones that don't make it are unlucky.. if only conception and luck were based on how deserving and loving a person you were.
January 19, 2017 | Unregistered CommenterTilly's mum
Tilly's mum, I do think my parents having gone through what they have is "helpful" in that they get it. Although our paths and experiences differ (they didn't pursue the level of infertility treatment we did and my sister was stillborn while Evelyn was born alive), they still have a level of understanding that many people cannot claim. And it's strange to say because I so wish my sister were here with us, living this life, but her death allows my parents to relate to us in a way other parents cannot. Because unless you've walked this path, the level of understanding is just not there. So while it feels strange and wrong in a way to feel fortunate to have parents who understand our loss, the truth is, it does help because they can assure us that time does soften the rawness, that the sharp edges of grief do, over time, dull and that someday down the line, we will once again feel joy and other emotions other than pain and sorrow and grief. While I cannot imagine my grief softening right now, they remind me that it's just too soon and that in time, a semblance of normalcy will once again find us. And I believe them despite my doubts because they're my parents and they've lived this life, too. While it is hard to hear, they also confirm what we already know: that this grief will last a lifetime and that we will have to learn to live with it and adapt (in time) to the life we've been given. (I prefer to use the word "adapt" as opposed to "accept" --- will I learn to adapt to life as it is now? In time, yes, I believe I will, as horrible as that is to consider. But accepting it...well, that's a whole other story and it's just not one I'm willing to entertain. And yes, watching their only child endure this devastation while at the same time managing their own grief...it is very difficult for them and I'm so sorry for all of us. One day at a time...

Thank you for sharing your Tilly with us. Such a beautiful, strong, feisty little girl. Our Evelyn was feisty too and I loved that about her. She only lived 8 hrs and 43 minutes but she fought so hard to stay and we're so thankful that we got to witness that part of her spirit and personality. And you are (unfortunately) exactly right: the death of a child has nothing to do with how much they are loved or wanted, how deserving you are, how long you've waited or tried, etc. Evelyn is our only child, conceived via IVF after an 8-year battle with infertility and she wasn't "supposed" to die. Miracles don't die. But ours did. And there is no explanation. I often say that if love alone were enough to have saved her, she never would have left us because she certainly was and is loved beyond measure. As was/is your Tilly and all of our beloved babies. This reality we all share...it's just so so hard. On so many levels. And so unbelievably cruel and unfair. Wishing you some level of peace in your heart today and in the days ahead. I know I said it before but I'll say it again because it's important: you are not alone.
January 19, 2017 | Unregistered CommenterMelissa
Tilly's Mum- I like the title of your post. I clicked on it right away since this is the exact way I have questioned my grief: HOW am I expected to live with it? A few weeks after my baby died I was crying to my sister. She is very spiritual and optimistic and she said that I have so many more days ahead of me and I will feel joy again. All I got from her statement was "She's right... I have SO many more days of... this". And that's how I felt for a long time, and how I still feel sometimes eight months out. Sometimes I try to remember that the earth is billions of years old, dinosaurs lived 120 million years ago, humans have been around for 50,000 years, and that my life is simply a flash in all this. Sometimes it helps, sometimes it doesn't. Passing it on in case you find it at all comforting.

Our baby was given a "fatal" diagnosis as well (in quotations because we found one living survivor with the condition that effects ~1/4000 babies... in the past few months I have found one more). We ended the pregnancy at 23 weeks and I regret it every day, although I have mostly gotten used to feeling this way too. The thought of adjusting to this steady state is horrifying sometimes, but I do have good days here and there. I also hate pregnancy announcements (our baby was a boy... so I often find myself wishing people would just have baby girls to "ease" the sting a little bit... which of course only happens 50% of the time), and I have had the exact same thoughts with the stupid "what to expect" emails I got for a long time until I finally hit 'unsubscribe'. I even googled "fatal diagnosis 20 week ultrasound" and stumbled on a few message boards of women saying things like "Oh don't worry honey your ultrasound will go FINE... basically no one gets really bad news and most everything is treatable nowadays," etc. I came really close to posting something like "don't expect it to be OK since you never know what can happen and the doctor may tell you your baby will die". My in-laws seem to have completely forgotten sometimes that we had a baby that died... my sister-in-law over Christmas started telling me about a woman she knows who lost her adult daughter and how it's so hard for her since she misses her so much and that it's something you never really get over, etc. Literally no acknowledgement that I understand what that woman is feeling.

Something that sort of helped right after is reading pretty dark books. I read The Road which is about post-apocalypse and that gave me a little escape for a while. Although I suppose that could have the opposite effect on some...

I unfortunately only had an hour with my son. We delivered him at 23 weeks and held him while he died, so I didn't get to glimpse his personality which makes me sad too.

I'm so sorry for your loss of Tilly, and everyone else's losses too. I have been coming here for some time, and have found understanding and an outlet, especially as everyone else in my former life forgets about my loss. It makes it easier to still communicate with them and not feel the need to scream "I'm doing terribly my baby died 8 months ago".
January 19, 2017 | Unregistered CommenterAbby
Tilly's Mum, I'm so sorry. my heart aches for you. My daughter also had a fatal diagnosis and was born at 20 weeks. I am almost 5 years out from her birth and I remember the 6 month point being a wave of anger, shock, fear (that I would never feel differently) and I was terrified that I was right back where it all started. Please know that this is not how you will feel forever. It truly comes in waves and as the years go by the water becomes calmer with periods of stormy weather.

As someone who has been in that pit of the 5/6 month despair please be kind to yourself, do whatever you feel like to get through the days. It's ok to spend the day in her room crying if that's what you need. It's also ok to do things that bring some happiness or joy. I had to have so much therapy to finally realise that my level of sadness didn't represent how much I loved my Shelby. That I could be happy and it didn't mean I loved her any less. So try for bursts of something that bring you some happiness (I know this is so tough but mentally I think it is so important).

Nature helped me, the beach, exercise, music and eventually returning to work.

I found a lot of people unwilling or unable to be there for me in the aftermath of our loss. Some I cut loose and some I have gone back to seeing now the ache isn't so fresh.

Take care of yourself and we are all here for you x
January 20, 2017 | Unregistered CommenterShelby's Mum
Melissa;
How very cruel that your family has gone through this twice. I'd like to think that your sister is caring for Evelyn now.. an Aunty and her Niece, even though they should both be here on earth. One thing I do without meaning to is compare my loss with others... I am grateful that I got 13 precious days with my daughter, I am also grateful that we conceived naturally and it breaks my heart when I hear of couples like you that have struggled for so long and done IVF and this had happened. IVF babies are miracles (my niece and nephew are IVF) and before this you would just assume nothing happens to IVF babies. Did you get many photos? I wished I had gotten someone to come in to the NICU and professionally take some but the ones we have are ok. They did offer someone to come in and do that when she passed away but it's so hard to know what to do, no one teaches you what to do if your baby dies! How very sad and strange that you have the insight of a bereaved sibling as well.
I like that you don't accept it but adapt to it. I can't accept it.. I can't accept the injustice of it all, in my home town it's as if the more hopeless you are the more healthy babies you get, they then go to DOCS, they keep producing and that's pretty much the circle of life.

Abby;
Yes that's a good way to look at it.. there is a song I often listen to and I quote "when you feel life coming down on you like a heavy weight, when you feel this crazy society adding to your pain, take a stroll to the nearest waters and remember you place, many moons have risen and fallen long, long before you came, so which way is the wind blowing, what does your heart say". It helps for me until I venture out of my house and see every Tom Dick and Harry with babies! In my case they were brutally honest with her chances as well, there were surviving children and a lot end up leading normal lives but it depends on the progression and location of the growth and my baby's was all wrong, also it was found very late so I never had to make the decision to TFMR. It's so hard and I thought I knew it was bad before she was born but after she was born I realised these doctors knew what they were talking about and they are being so brutally honest because it's the truth. I will look for that book too thanks. I am sorry for the loss of your precious baby boy, glow in the woods is comforting for all of us and with each reply and post our babies are thought of.

Shelby's mum;
That makes sense about the level of sadness.. sometimes when I am feeling ok I think to myself, 'just allow yourself a moment of being ok because you have the rest of your life that you have to grieve'... and when it hits it hits hard. My fiancé and I were to be married in a few months and after loosing our baby I will be cutting down our guest list by half! I'm sure when we have another baby one day (I say that lightly as I thought I had a pretty good idea of my future but now I can't see a thing) these people will re appear with their fake smiles and bullsh*t and I will make them uncomfortable once again by mentioning my firstborn.

Thank you all once again for your support and advice. I am sorry we all have this in common but know that you are all helping me on my journey with the strength that your babies have given you. Xxx
January 25, 2017 | Unregistered CommenterTilly's mum