24th December 2021 – Christmas Eve
This post is hard to write. All of them have been but this is the worst so far.
It’s Christmas Eve.
Amber sits on my fireplace in a scatter tube. It’s got a lake and a rainbow on it, it’s about 15cm high. It’s obscene. I hate it. I had to let my daughter Coreigh choose which one to get because I hated them all. So did she… she only picked this one because of the rainbow, it seemed the least offensive of the choices laid before us.
My beautiful baby girl, always tiny. Only 4Ibs 11oz at birth. 5Ibs 3oz when she passed. I long to feel the weight of her in my arms, her solid little warmth tucked up safe in my arms. The little spot on her forehead I kissed so many times telling her constantly how much I love her. The spot I last kissed at 12.55pm on Wednesday after I laid her down for the last time and wrapped her up so she wouldn’t be cold.
My little fox, sitting on my fireplace while a candle burns next to her so she’s not in the dark.
On Monday I went to see her, I took books, one of her swaddles, needles, thread and her rattle I bought her for Christmas. Baby wipes too, her nose was still running and I wanted to clean her face for her.
I spent two and a half hours stitching in the swaddle I’d taken, creamy white muslin with green trees. More what I’d had in mind when I ordered her a hand woven casket. Natural. Simple. The table the casket was placed on was too low really, I have chronic back pain so after an hour or so it was screaming at me, I just ignored it, stretched and carried on stitching the muslin to the calico lining that Cath who’d made the casket had lined it with originally. I sang to Amber and talked while I did it. It’s what I’ve always done so we kept each other company in the chill of the small room. Every now and again I’d be offered a coffee so I would take a break and stretch again. When I’d finished I decided to add a delicate lace ribbon around the top, more sewing but this time through the wicker to cover the join of the calico and muslin. It was one of the last physical acts I would be able to do for my daughter and I wanted it perfect. (Or as perfect as possible with my sub standard sewing skills.)
I spent another 2 and a half hours cuddling her, swaddled in a thick blanket to give the pretence that she was still warm. We read, ‘The Velveteen Rabbit’ again, ‘Sleep Tight, Very Hungry Caterpillar’ and of course as always ‘Guess How Much I Love You’. I sang to her (badly as always) ‘The Lion Sleeps Tonight’. You know I’ve been singing that to her since she was first born and I’m sure I get the words mixed up, simple though they are. I only realised when choosing music for her service. I would have left after 4 hours but a friend video called me from Sweden. He lives off grid in the middle of nowhere and I think it was about -15 where he was, he had to charge his phone by solar power just to call. He sat in his car as the only place with warmth and light and listened to me cry, tried to offer comfort, told me to go to Sweden to visit (when it’s warmer and covid settles down) and then told me to go home immediately when he realised I’d had barely any sleep, a long drive and I’d been at the funeral home for almost 5 hours. I did Munk (if you’re reading this, I promise I went home when we ended our call.)
At least the pink satin was covered.
I went home and drank wine, cried, went to bed and slept from exhaustion only to wake in the early hours again as always, dozing until it was time to get up, drink endless coffee and drive back to see Amber again. My evening now are non-descript. I drink some wine, smoke endlessly (stupid stupid to start again, I’d quit over 3 years ago), stare at photos of my baby, hug my dog, cry endlessly and then once I’ve exhausted myself fall into bed to cry into my empty pillow until I sleep. A dark, dreamless sleep thank goodness but which doesn’t leave me rested. Soraya checks on me often, my mum and Coreigh call most days to check on me. So does Jess. I don’t have the energy to reply to most people, I am getting so many messages but I am overwhelmingly grateful for all of the support and love I am getting. I send hearts and fox emojis and hope everyone understands why I can’t reply properly.
I drove back to see Amber on Tuesday, a 90 mile round trip but it was my last day with her with no time constraints. I spent another full 5 hours with her, cuddling again, singing (badly) again. Reading, this time fairytales from a book I had as a child and yes, once again ‘Guess How Much I Love You’. (There is a copy of this which I placed with her in her casket, it was Coreighs favourite as little girl too.) More coffee, more crying. So so difficult to put her down this time. I don’t know where the time went during these hours, I just know it went too fast. I remember panicking as 5.30 approached, they close then but they never rushed me. I overstayed 15 minutes past closing, kissing her so many times, trying to walk to the door to leave but having to keep going back just one, two, three more times… she just looked like she was sleeping still. Peaceful and beautiful.
Home.. wine.. smoke.. cry.. look at photos.. I didn’t sleep well on Tuesday night either. I had a black dread of morning coming, wished it away but it came anyway.
Wednesday, black black day. I had to be up early, I wanted to be at the funeral directors early to spend an hour with Amber. My last cuddle. The last time I would feel her in my arms. I was getting driven there by a friend Mairi, also my midwife, also someone who understands loss. I would have travelled with my mum and dad but they are concerned about covid, understandable but another inconvenience of the pandemic which has ruined so many lives this last year or two. It’s certainly made my traumatic year worse in so many ways. As it was Mairi was wonderful though we cried much of the way, she bought me coffee and a croissant when she found out I’d not eaten and she stood smoking with me while we waited for everyone from a previous funeral to leave.
I felt numb, the day dawned feeling surreal. After months of intensive, non stop ‘busy’ it didn’t feel real that today was the end of it all. Today I would look at Ambers face and be able to touch her for the last time. After today there would be no more.. not even being able to drive to Inverness to see her and hold her at the funeral directors. This place had weirdly become the one place I could find some peace, the only place that I could be with Amber, hold her and care for her and just ‘be’. No expectations or worry from anyone else. A place to be quiet, a place I have had to accept that to be with her I had to go to. And the last day had come. I didn’t want to be there, I didn’t want to do it and I wasn’t ready to say goodbye either. I’m still not. I did it because I had to but I’m still not ready. I’m not ok. Honestly I could have just taken her and run but to where? So Mairi walked with me inside, to give me the strength to do it and I went in to see her for the last time. My Amber.
More to follow…
27th December 2021
My Amber. Laid there, quiet, peaceful, she still just looked like she was sleeping.
I asked the funeral director to show my parents and daughter through when they arrived if they wanted to see her. I lifted out everything I’d placed in her casket and placed it carefully on the table. Her flowers were beautiful, a delicate spray of pale pink and white tiny roses, calla lilies, gypsophila to be laid on top, a delicate garland of greenery and gypsophila woven around her casket. They were perfect and just as I imagined. Just as I’d asked for. Beautiful but they made me cry because of why they were there.
I sat with her in my arms for the last time. The last time I would see her sweet face, she has (had) incredibly long lashes, a tiny upturned nose, the pink glow was gone from her skin but I could see it anyway. Her face cuddled down into the crook of my arm. I looked into her face, I cried, I read her ‘Guess How Much I Love You’ one more time. I talked to her, just telling her over and over again how much I love her, how much I miss her, how I’d give anything just to be back on the wards again and spend those endless hours sat by her and staring into her big eyes.
Coreigh came into the room, she’d brought her letter to her sister folded into a swan, she hugged me, averting her eyes and said she couldn’t look at her little sister but as she pulled away she looked down anyway, not able to help herself and said how beautiful she looked in her headband. How she just looked like she was sleeping. She cried too.
My mum and dad came in to see Amber, all of us together, my mum kissed her gently on her head, we all cried more. Coreigh left briefly but then returned to say they’d spelt Ambers middle name wrong on the screen and she needed to know where the office was to get them to change it. They’d written Lila instead of Lily.
Then they left me, alone with my baby girl for our last minutes. I honestly don’t know what I said to her in that time, I think I just kept telling her I love her, I cuddled her close, kissed her a hundred times, the last kisses I could give her little face. I know I stroked her beautiful dark hair, felt it’s softness under my fingers trying to memorize it by touch.
They’d told me they would leave me as long as possible before the service but I didn’t want to rush placing her down either. It was only 20 minutes before her service and I panicked, time was ticking too fast, my hour was almost gone and I didn’t want to put her down, I’ve never wanted to put her down, I’d always planned on carrying her around with me in a babywrap, we tried it briefly once at home but it was tricky with her oxygen tube and her mini sats monitor wouldn’t pick up a steady reading so I had to give up on the idea pretty quickly. I squeezed her tight to me. You read stories about mothers who lose their child and howl, a primal sound, loud and unfettered. I done it a few times since I lost Amber, it’s unstoppable and unexpected when it happens and I wanted to let it out now but I was aware of voices in the corridor outside, of people already sitting in the chapel, I could feel it building up though so I buried my face into her blanket to smother the sound. Nothing I write will describe that moment. Nothing I write is powerful enough. Nothing I write can explain the physical pain of losing my baby and having to put her down at that moment. Only someone who has lived it can understand I think, I’ve lost loved ones before including my beautiful brother five years ago. I didn’t think there was worse pain than that. There is.
I smoothed out her swaddle in her casket, I placed in a letter from her father and laid her gently on top of it. (I won’t be writing about him, suffice to say he isn’t part of our journey through pregnancy and scbu/nicu and he only met her a couple of times. I’d said I’d place a letter for him with her and I did. Whatever he had to say is between himself and Amber, she knows the truth of everything so I leave it to her wisdom.) I placed her bunny and her hare at the top of her casket, their arms embracing her. Her owl which I bought for her one month birthday (my spirit animal) at her feet for protection. Her hare has my moonstone, my hair and a silver heart. I checked her amber beads were still in her left hand, a tiny silver heart in her right. Pandoras paw imprint at her feet, her monkey teething ring she would cling to on her chest, my kiss imprint tucked by her cheek. Photographs of Coreigh, Oliver and I and a rainbow at her side, Pandoras photo at her head standing as a protective guardian. My mums, Coreighs and my letters slotted in at her side and the a photograph of Amber and I at the other. Her ‘Guess How Much I Love You’ book went in there too. I tucked some sucrose into her blanket, a scbu dummy sat on the bunnies feet. Everything carefully placed. Amber lying on her right side slightly, how she always preferred to sleep. She was still swaddled in her cosy blanket, I didn’t want her to be cold. I went to get Coreigh, I’d had two tiny posies of roses and calla lilies made, one pink, one white. Coreigh chose white and placed it with Amber and I placed the pink.
They came to tell me it was time. I had one more minute with her. I lost my breath, I sobbed, I kissed my little one for a last time, whispered I love her and then had to leave her. I walked back into the room behind the chapel and waited with my parents, daughter and her fiancee and Jess and her husband until it was time for us to go through.
None of it felt real, it still doesn’t. I’m writing these words and I can’t believe it’s happened. I can’t believe my little girl is gone. If I close my eyes I am back on the ward with her, listening to the beep of the monitors, spending my time untangling her wires and tubes, stroking her feet, singing to her endlessly and staring in wonder at this miraculous little creature that was all mine.
I question sometimes why I’m writing this all here. All my posts up until losing Amber were my updates for friends and family on social media, a way of letting everyone know how she was, how I was. I’ve always journaled and unable to do that in hospital it was also a way to remember, to keep note of everything. Now I’m home but initially I didn’t have the time to do my usual creative journals and now I don’t have the heart, not yet. So I suppose I have multiple reasons for creating this blog. Typing is easy, I WANT to remember everything, every minute, every second of having Amber. I want to feel the pain because the loss of her is so intense, beyond anything I ever imagined but because I can barely function at the moment writing it all down helps get it out, helps me formulate thoughts briefly. I don’t know how to do this, I don’t know how to live or be or survive without her, writing this keeps her ‘here’. If I’m writing about her she’s not really gone, she’s still with me. She’s also all I can think about but I’m exhausted, talking is exhausting, trying to be ‘ok’ is exhausting. I have messages piling up in my inbox and no energy to reply to most of them, I feel guilty for not being able to reply so I send the hearts and fox emojis usually. I just want my baby. I just want her back. I can’t accept she’s not here and I don’t want to. One day I will write our early story, how I decided to continue on with my pregnancy and I hope it may help another family decide, know where to go for advice and help. Right now I’m writing trying to survive my loss. I want the world to know my little girl and how amazing she is. I want her memory to live on. I’m terrified of five, ten, twenty years time when she is in the ‘past’. So I write, and I talk to her constantly, I struggle in company because it’s harder to feel her when there’s distractions and I cry so much. I don’t know what my ‘life’ is any more or where to go from here.
Amber, The Trisomy 18 journey of 'my little fox' 