I wont bother editing. I know this is all over the place but, so are my thoughts. Just bear with me.
He would be 24 days old. These last few weeks have felt like years.
Grief is very individual, I knew that, but living it is something so different.
At first I was just numb, I could speak about what happened and barely tear up. Like I was no more than an observer in someone else's tragic life.
The first shopping trip to our local supermarket, was ok. Nobody we knew saw us.
Second trip, they did.
I feel like I am drowning in sadness sometimes, other times I feel anger, and other times I just need to look at photos over and over and over.
It took about two weeks after his death to process it, to the point where the numbness was going away and every mention or sign of him would set me off. Today I am in-between deep aching sadness and frustration. I keep having these horrendous dreams where A would come back to life... they are so cruel. I wake up crying most mornings now. I didn't dream for a while at first, and the first one I did have A came back to life and I took him home. I am so angry that not only did I have that dream, but it was what seemed to wake me from the numbness so that I began to feel it all.
Our local fruit and veg family, a family we have essentially become a part of due to how long we have known them. They were so broken, they didn't know what to say, nobody knows what to say. As soon as I looked at them, I started tearing up so I got a big hug.
Then it was the pharmacy, I hadn't even told anyone so I assume someone's big mouth not only announced MY news of my baby's birth, but death as well. One of the ladies (again, we know them well, we have been coming to this particular place for 9 years now) just put her hand on mine, she asked if I was ok. I've began just nodding, or being honest and saying no. I just couldn't look in her eyes.
Our pharmacist could barely look me in the eyes, he could barely speak. The sadness was written all over his face. He's a father too, so I hope he went home and held his kids tight....
It was such an awkward experience, I absolutely hate crying in front of people.
At school pick up, the first time I went (first day back, I wasn't going to make my partner face everything alone) one of our mum friends had the biggest smile on her face as she walked up to me, only for her face to fall and say no, no?, no! over and over, before giving me a long hug. She said she was expecting to see a baby, some good news, of course there was anything but. I was pregnant and still waiting for labour the last time we spoke. We never got to bring our baby home, as a baby. She's heartbroken, only a couple of weeks ago she announced her pregnancy. I showed her a photo of A, my beautiful little baby and she said he was beautiful. I am so eternally grateful for heartfelt, without these photos, I would only have either a couple of birth ones or ones where he was covered in tubes and wires, or the ones when his body was just an empty shell.
I prefer to show the nice ones, even though I barely remember him like that. She loved his name too. It feels kind of wrong to say his name, I wish we had told people it before birth so that it doesn't feel like I'm talking about someone else's child.
I never truly felt like his mum, I never got to do the proper mum things like change his nappy or feed him throughout the night. I never got to dress him until he was dead, the most I did do was put his little hat on. So much was stolen from us.
My partner later mentioned seeing two other mums sitting where we usually did, ones we talk to quite often too, look like they'd been punched in the stomach when the other mum approached us and our reaction. They knew, without needing to be told. It will get around the school pretty soon I'm sure.
My 5yo's teacher came across the school yard to tell us she was told what happened, and she was utterly devastated. She was pretty excited for us, and knew bub had a heart defect but like us, expected the first surgery to be months away, not that he wouldn't even live to see the first. She got flowers the next day and sent them home with R. I don't care what the books say, live flowers are nice to receive as a grieving mum, even if they do die. The vivid colours, and having something living to take care of is nice.
Then yesterday, another mum, one I haven't spoken to but I've seen her around school, town and even the hospital, always has the brightest happiest smile. She knew I was pregnant, and I saw her eyes go straight to my belly as she passed us, she processed it for a second and walked away really fast. It was obvious she either realised I don't have a baby anymore or that he's sick still in hospital. You can see the shock, the sadness.
Then at the shops, another lady we saw often had the biggest smile on her face and looked at my belly. Her face fell when I shook my head. She started to tear up and wanted to give me a hug but I shut down. I wanted a hug, but couldn't bring myself to walk to her. She felt so bad, but all I could do was choke out the words 'it's ok'. Another milestone I guess. Can't even talk about my baby, it just hurts too much.
I can't imagine what it must be like so see someone pregnant, and suddenly not; with no baby.
From my perspective, it is not only alienating, but isolating. However, I prefer that than other's doing things they think will help, not knowing that I only see it as them making themselves feel better. I don't need constant visits, or people asking how I am all the time, it's it obvious? My baby died, I will never be ok with that, I will never be ok again.
Counselling is something I have already sought, I have spoken with SANDS. Saying I need counselling to my partner 'out of concern for me due to my history of depression' downright sucks. Do people not realise one of the first things the social worker did when A died was get me folder with information for bereavement, things in general and specific to SA. How to speak to the kids, how to take care of myself, what counselling is available and what to expect when I am ceasing lactation. Nobody is alone with this, and to assume I don't have support I need and want goes to show how much this topic isn't spoken about....
At first, I took everything I accepted all help, I ate food that was brought to me even though I didn't actually want to eat. I even sat down and looked through the bereavement folder after walking away from the hospital that next morning. I sat on my bed and read through how best to talk to the kids about death. I know at least in my grief, I did the right thing and told the kids the right way.
I knew to be honest, and straight to the point.
I sat the kids on the bed, the one I spent the night in with A. The kids tried to look in the cold cot, but we redirected their attention. They had no idea we'd just taken their dead brother to the mortuary just before. I said to them, you know how the baby was sick, that's why we are here. Yesterday he got sicker and his heart stopped working. He died.
My older two immediately broke down already knowing something was up because I could see the dread on their faces. The younger two didn't quite get it, they are too young. My daughter was so upset she could barely breathe.
They are ok now, I see the sadness but we talk about A a lot, and we talk about the things he did, I show them photos and video. We made sure to let them know to talk about their feelings if they want to, and to not hide how sad they are. Not to hold everything in. Our daughter, that first night, broke down again but at first it seemed like she was holding it in. My partner gave her a hug and told her to let it all out, that it is ok to cry so cry she did. She didn't want to be held, she curled up in a ball and cried and eventually fell asleep. I wanted so badly to cuddle her, but I knew I had to let her grieve in her own way. I couldn't handle being touched by others. I got so frustrated with my mum hugging me eventually, I couldn't handle hugging my in-laws when I saw them. I still don't want to be touched by anyone but my partner and kids, and even then, I struggle. I should be cuddling my baby.
Every night since A died, I have slept with his bunny, wrapped in the blanket my mum took when he was still alive knowing I needed something of his to sleep that second night. His smell is virtually gone, and that sucks, but having something of his, is as close to having him with me as I can get. His box of ashes used to be beside the bed, we had him with us when we had a shot of Icelandic vodka a few days after arriving home, having made the promise during pregnancy that we would; when we brought him home. Now he sits on a shelf, surrounded by his foot and hand prints, the letters we were sent from the hospital since coming home. I had the battery operated candles I had on during labour around him. I had more new ones delivered to day, so I've taken the original ones away and will put them somewhere special.
I have the end of the cord that I clamped after cutting him free, it wasn't needed but I still did it. I have been waiting for it to dry like I would have on his belly (had it been there, as his never fell off, he was cremated with his cord tie) it's got some mould starting because it has been wet and cold here the last few days and I am devastated. I don't know how it will be now that has happened. I hope I can prevent it rotting... at the very least.
I am grieving, I am not going on antidepressants for a normal human emotion, I am processing things, I am writing, I am talking. It's not abnormal to want to distance myself right now. I don't want to see anyone, pretend I want guests or even go out for coffee with my best friend. I barely want to talk to people and acting like I SHOULD want to be surrounded by people isn't nice. I just don't. Respecting my space is what I need from people. I had a mum bring food, and that was very much appreciated. I had my mum visit, mostly because I was barely handling the kids because it all hit me the day or so before.
Babies flood my Facebook feed because of my line of work and interests, I used to have a pang of jealousy before I got pregnant, then when I would see happy healthy babies I'd be excited to meet my own, and now it's just feels like a constant kick in the guts. I see all these babies that were born in the weeks before mine, and it kills me. The unfairness. I should have a baby to be snuggling in bed, I shouldn't be dealing with postpartum recovery alone, I am supposed to have a baby, I'm meant to be happy, not grieving. I have avoided social media for long enough that my friends are beginning to notice, going by the message notifications I'm getting but ignoring....
I am angry, I have moments of rage. Why MY baby. This kind of shit isn't meant to happen to people, but it does. Why did they get all the echos so badly wrong? How did they miss the atrial septal defect Why wasn't I warned properly that my baby might die straight after birth when I am sure they knew. I remember a cardiologist saying babies with this condition, without surgery don't live more than a few days, I had no idea at the time he was hinting to my baby's condition. I didn't hear the official diagnosis of Heterotaxy until we had been in Melbourne a few days. I expected my baby to have surgery sooner. Although I know now that this would have happened anyway, the surgery that was planned would not have removed the factor that ultimately took his life.
Why didn't they tell me that although surgery happens, they still don't usually survive. Even though I did research Right Atrial Isomerism at 34ish weeks, it didn't mean I could recall that information. I wish they didn't go around the facts when they sat with me and discussed our options - my partner hadn't even left Adelaide so the decision was on me. My partner trusts me 100% with the health and wellbeing of our children, I know that he would never try to decide, he doesn't have the medical background that I do, and he knows I would always, even if it hurts me, make the right decision for our children. It didn't feel like a burden, and it doesn't now. But I do wish he was with me on that day.
I remember mixing up some of the statistics, and relaying them in a way that we both had more hope than we should have. I still told him he HAD to come sooner than he planned, I can't imagine what I'd be feeling if they weren't in Melbourne that day and I had to say goodbye to my baby alone, never showing his siblings his little face and giving them the chance to touch his little head. I hate the thought that my partner may have only seen his baby boy for a day, never to see him alive again after we left for Melbourne. I am glad A waited, I am glad we got to say goodbye together.
I was going to go through with the surgery if he lived, I wanted my baby to have whatever help was available and if then he didn't live, then he was given every chance. I wasn't going to 'give up' and choose palliative care without a good reason. My baby was stable, happy, receiving milk through his NG and getting regular cuddles. When bub was hypoxic, it felt like he was already dead. He started to go cold from extremely low oxygen levels, his heart was beating above 160bpm, at times as high as the 180sm, the oxygen pumping so fast at 106% with absolutely no effect. The drugs they were giving him, again having no effect. I knew the moment I walked into his room that day, seeing staff everywhere, hearing noises and seeing the sats. I knew my baby was leaving this earth, and as much as I begged him t keep fighting, his little heart was just not working properly. Those pulmonary veins were just too obstructed.
If I knew sooner, that the time I had with him was more precious than I imagined. I would have embraced every second, I would never have left for lunch that day when he began to crash in front of my eyes. I would have spent less time away from him, not that it was much and I truly needed to sleep. I did what I felt I needed to at the time, I thought I needed to care for myself because my baby would need me. The night before I cut our cuddles short because I didn't want to be walking across the park alone, I also needed to be out of those walls, to spend time with my family, having not left he hospital since arriving, except for getting the keys that day.
I knew he wasn't great that morning before I left for lunch. I was noticing he was needing more suctioning, putting the blame on him being moved for cuddles. I thought he would be ok. I was in a delusional place thinking there was no way my baby will die, he will get stabilised with this medication and I'll get another cuddle this afternoon.
I did, but not the way I expected. I didn't know that afternoon, I was going to be holding my baby as he left this earth, I didn't know that night I would be crying and cuddled up to the shell that was my baby's home.
Nobody knows what to say to me now. I feel ostracised.
It feels so wrong to be pregnant, to wait over 40 weeks and then suddenly not be with no baby to show for the 7.5 hours I laboured with him, the 5 days I spent at his bedside.
My body is changing, I am no longer making milk and my tummy is going. Once upon a time this 'snapping back' would have been a blessing, but now it's traumatic. My body is erasing his presence, his existence.
I am still sore from birth, from pregnancy yet it feels wrong. I don't feel like I had a baby so recently, it feels like it has been years. I have to remember I am still postpartum, and it has only been weeks. He wouldn't even be a month old, even with the births that were easier on my body I was still recovering. A's birth was so fast, and I didn't feel like I had a baby until the shock wore off. I feel it all now, and sometimes I am glad. Lochia is stopping, and that's painful emotionally.
Time is almost at a standstill, the hours drag by whereas I know if he was here these moments would be gone in the blink of an eye.
And to top it all off, I am flaring again. As if two hospital admissions during pregnancy wasn't bad enough, and now to deal with extreme physical pain along with my emotional pain.
Yesterday I tried to buy a new bra or two, now that I am no longer lactating, I am back to my pre-kids size. Something I literally have not been since I first got pregnant with my eldest. I walked around the shop, knowing now that I can actually get a cheap bra because I'm not so large to need them specially ordered or from a specific place. I got overwhelmed trying to look. It was just something I couldn't handle. Even looking for shirts. Just being there doing something differently to what I was supposed to be doing was too much. I was meant to be buying more maternity bras, loose shirts, comfy things to cuddle my baby wearing... instead I'm looking for a bra that will make me feel a little better about my new physical shape, and clothes that don't remind me constantly that my baby is gone. I had to leave the shops.
Things are going to take more time than I even dreamed. I know I need clothes, I lost a lot of weight during pregnancy and have next to nothing to wear, but I also hardly care.
I just want to lie in bed, do nothing and cry.
I miss my baby so much...
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