Devastation – Amber, The Trisomy 18 journey of 'my little fox'

7 weeks later…

(Please be aware that this is not a happy post. It may be triggering for some)

I spend most my time in tears, days are a struggle and I am surviving hour by hour. Life seems pointless, empty, hopeless and I feel like a ghost wandering in my house.

I’ve been told losing a child isn’t like any other bereavement, it’s classed as trauma and I already carry so much trauma from my pregnancy, Ambers diagnosis, the months in SCBU and NICU and all that happened there, not to mention all that occurred when we got home.

I have so many happy memories of her too, I’ve been writing them down as I remember each one. Each a precious part of her and I and I don’t want them to fade with time, I don’t want to forget any of them. I can look back at them and hopefully they will make me smile rather than bring me to my knees crying as they do right now. I don’t want to lose any of these memories, they value is worth more than gold and in the midst of everything else in my head I need to cling to them and keep them protected.

But then there’s the other stuff, all the stuff which overwhelms me and seems to shadow my grief. The things that happened which won’t allow me to sit just with my grief and try to deal with her loss but that often overpower me with the despair of what she and I lived through. Of all the hideous moments that I can see in my mind. I’m having regular flashbacks and I can’t turn them off.

I can hear her screams the weekend she got taken so ill and rushed to Glasgow. I go dizzy when I remember how she whimpered as I’d tried to retape her tube and prongs on the Saturday but had to push in the tube a little as it was starting to protrude, not knowing that her bowel had been punctured the day before. I didn’t know, no one knew until she had her surgery on Monday, how could we have? I know logically it wasn’t my fault. I know that they only got a doctor to come to the room because I insisted that something wasn’t right, that she didn’t whimper like that. I know that I insisted I knew her better than anyone and that she was in pain and no, it definitely wasn’t constipation or a temperature. I KNOW this. But I still relive it, I still feel sick and go dizzy and feel guilty that I retaped that damn tube.

I sit on my doorstep on a night and smoke… (stupid stupid habit to start again having been quit for almost 4 years) and I can see the towering building and lights of Glasgow hospital in front of me from the end of the long path you walk down to get there. I can feel the exhaustion and despair I used to feel as I walked down that path, pushed aside by the eagerness and excitement of seeing my tiny daughter who I’d probably only been away from for an hour or so. I’ll never be able to walk that path again and see her but every night, there it still is as I sit on my doorstep.

Sometimes I can see the ambulance as it parked outside my house bringing her home. I can picture the sequence of events that day as clearly as if they were happening now. The terror of wondering if she’ll breathe as they took her out the portable incubator but the desperation to have her back in my arms. I’d had to leave Glasgow early in the morning without her to drive for 3 hours and then spend an hour trying to unload over 2 months of suitcases, medical equipment and four bags of medications from my car and get the house ready for her arrival. The picture is vivid.

The noise of the monitors as they flash and buzz and beep, the sound rings in my head in the early hours of the morning. They wake me in the darkness, as do nightmares that I can’t remember on waking but leave me breathless and crying. I lay and try to quieten my mind but there is no relief and there is no peace.

There is so much more, so many times that I can see, clear as day as if I’m there in that moment again, too much to list here, some I don’t want to write about in detail like having to resuscitate Amber on my sofa or the moment they took her to theatre.

All of it haunts me and I have no control over when these flashbacks come.

I’m struggling to get out the house much, it all really depends on that moment in time as to whether I actually get out the door or not. There’s times I can’t breathe or I panic and I just close the door again and leave it for another day. I was thinking I’d quite like a glass of wine tonight but today has been a particularly bad day and I’m not sure I can go out to buy any. So be it, it’s maybe not a bad thing.

My psychologist is calling tomorrow, she’s lovely and gentle but conversations are hard. She’s told me I have PTSD and so is going to try get me a referral for a therapist. How long that will take I don’t know but I’m starting to understand that it’s not just grief I’m dealing with, it’s more complicated.

When I started this journey with Amber I knew losing her was a possibility but I was never prepared for HOW painfully devastating it would be. How the pain is physical, how the physical loss of not having her in my arms would sweep me away and I’d lose myself completely. How I can cry for days almost nonstop and then go numb and emotionless from exhaustion for a few hours before the tears begin again when I look at Ambers photo or have another flashback.

It seems strange, writing this here and showing it to the world. I don’t mind those I love reading it though, I’m finding it hard to talk much right now or express how I’m actually feeling when talking, people don’t really know what to say. It’s hard when all I really want to say is ‘I want my baby back.’ on a repeated loop, so if I write it here they may read if they wish.

Maybe it may help another parent going through the same or similar too, perhaps make them feel less alone and like they’re not going crazy for feeling like this. Maybe help someone realise it can be PTSD as well as the already amplified trauma of losing your baby/child.

Partly because writing how I’m feeling helps get it out my head for a moment or two, makes ME feel like I’m not going crazy. This isn’t a post I’d intended on writing but when I decided to blog Ambers journey, something I’d thought about during those long days in the hospital, I’d wanted to be true to her and this is still her journey too. How I’m feeling now is all because of Amber and how much I love her. How my little girl was an incredible, strong, brave and unique soul. My little fox has a legacy, her impact on me is profound. She has touched hearts across the world. I want the world to remember her, how special and amazing she is. How I can still feel her around me at times, not as often as I want but I hope as time moves on I will be able to have contact with her more, perhaps if I can clear some space in my head it will be easier for her to make her way through.

I hope one day I will be able to read these words from a better place, know that I can cry a little less and smile a little more when I look at Ambers photo or watch videos of her.

I won’t ever be the same, I won’t ever heal from this. I know that. The only thing I want is the one thing nobody can give me, I want my baby back. I want Amber back in my arms.

The Worst Week, having to say Goodbye…

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.

Dark Days

19th December 2021

So I finally did some washing and took it to my friend Islas house to dry, it felt ridiculous carrying my wet washing across the road but nothing makes sense to me anymore anyway.

I can’t get the thought of the pink satin lining Ambers casket out my head, it’s so ‘chintzy’ and so far removed from what I intended her casket to be, natural, earthy, simple. Don’t get me wrong, I’m grateful to the funeral directors, they’ve tried to make her look beautiful in there, tried to make it ‘cosy’, it’s just not me. It’s not Amber either. My mum asked me if I could ‘live with it’ but I just can’t shake it off, the feeling it’s not ‘right’. I’m going to go back tomorrow and see her, take one of her swaddles and a needle and thread and re-do it. If I don’t I know it’ll bother me for the rest of my life that it wasn’t right and how I wanted it to be for her. I think I’ll be there a while tomorrow again, it’s going to take some time and I need to sit quietly with her too, read and sing and cuddle her. I don’t know if I’ll be able to on Wednesday, maybe tomorrow is the last time I’ll hold her. Maybe I’ll go Tuesday too. It’s a 90 mile round drive to see her but the days without her are so hard and time ticking by too fast.

My neighbour does beautiful woodwork, I asked him if he could make me a box to keep her ashes in. I don’t want to look at the cardboard scatter tube they’ll return her in. My baby girl reduced to a cardboard tube, it’s hideous. He came around yesterday with a gorgeous wooden box he’d already made, he’s going to put foxes on the outside for me but wanted to check I liked it first. I do, it’s a more fitting place for her to rest. At the same time I don’t… looking at the container that will soon hold what remains of my baby girl is unbearable, unimaginable, unthinkable, unacceptable. Inevitable.

A couple of the Highland newspapers want to do a memorial piece for Amber. Isla started a Go Fund Me for Amber and I and one of them picked up on it. Another had approached the funeral directors. I’m not sure, I generally am a private person, I’m not that keen on media or putting myself ‘out there’. Perhaps it will help this blog? Perhaps it will help another family? Perhaps it will make Trisomy 18 more spoken about, more recognized, more understood? I’m just not sure, I don’t want to have to talk to people I don’t know right now. I’m hiding, frozen and I don’t want to face the world. I just want Amber back.

The Go Fund Me was unexpected, it’s a beautiful gesture and people are so generous. It will help so much so if anyone has donated who is reading this now… thank you so much. you have lifted some of the financial burden that losing Amber has brought. This journey with her has restored my faith in human nature, made me see with new eyes peoples kindness and generosity. I was getting a bit cynical before this pregnancy I think, this is clearly another of Ambers precious gifts to me.

It’s cold and damp today, it suits my mood. I’m so tired but need to walk my dog soon. I wish Amber was with me, I had so many plans to tuck her safe in a baby wrap and carry her with me, warm and safe while we walked by the river, through the forest and in the hills. The ache is constant, the pain is physical. I never knew pain like this could exist.

My little fox has gone to the stars…

8th December 2021

Amber My little fox has gone to dance amongst the stars. My tiny little Warrior Queen.. I am broken.I love you all the way to the moon and back and will do forever and for eternity. My brave, feisty little fox, you have touched the heart of everyone who has met you and I don’t even know how to breathe without you Amber Marina Lily, 14th September 2021 – 8th December 2021

9th December 2021

My perfect, perfect little fox Oh Amber I miss you so much and it’s not even two days, I don’t know how to breathe without you. The house is too quiet, I miss the sound of the oxygen, even the damn beep of your sats monitor and most of all I miss your sweet, beautiful and feisty self and the weight of you in my arms Devastated broken empty. I should be planning your first Christmas not your funeral I love you to the moon and back. Always xxx

@katieowl1700
♬ original sound – katieowl1700

11th December 2021

My girls

12th December 2021

First night without Amber at home I feel empty and like I’m dying inside. Hate my house right now, nothing feels right. I miss the weight of her in my arms. A day making funeral arrangements when I should be planning her first Christmas. Broken.

It’s not just my devastation, Pandora slept every night with her head over Ambers feet (I’d made a wee nest for her so she could safely co-sleep with me)Every night still, Pandora sleeps in the same spot and looks for her

13th December 2021

broken

14th December 2021

‘I have heard it said that the greatest loss that a human being can experience is the loss of a child. This is true. It doesn’t just change you, it demolishes you. The rest of your life is spent on another level.’ ~Gloria Venderbilt

Thank you for today Elizabeth I’m so glad that you’re speaking for Amber and I next week, I can’t think of anyone better and I’m certain a little fox pushed me to ask you too I’m also so grateful you brought me a little bit of calm today, you helped me survive another day xxx

15th December 2021

I wish you were here Jemimah I wish we could go back to that day I miss her so much

One week without you Amber and it’s killing me. Every day without you has been unbearable but having to register your passing today officially has shattered me.

16th December 2021

Not a happy post but I have just heard from the funeral directors that Ambers casket has arrived.I was determined my little fox would not be in a ‘box’ so I have had a custom made wicker casket made just for her in Dorset. So grateful to Cath and her husband for the care they have put into creating this and the attention to detail. This wasn’t something I wanted to have to order but they have made it as special as they can for my little one.

A friend who has just lost her little boy three weeks ago posted this poem to my page…

“It was the night before Christmas and Santa was busy making his rounds. He was light on his feet making sure he didn’t make a sound. But he took notice that some homes didn’t have that Christmas Glee.so he decided to stop because he thought that just can’t be. He crept in a mommy’s bedroom and stopped dead in his steps, as he saw a little angel hugging his mom as she slept. The little angel looked up and cried ” oh Santa you are finally here!! I’ve been waiting for you to help me let Mommy know I am near”. Santa picked up the wee angel and asked him ” What can I do? I’m just a simple toy maker I can’t make your mommy’s dreams come true” .So the two of them sat and they sat for a while until the tiny angel jumped up and screamed with a smile. “let’s leave her a sign a beautiful sign from above, let her know it’s from me sent from heaven with love”!!!So Santa dug and he dug deep, in that big glorious bag that was filled with lots of treats .He pulled out a beautiful white feather that look like it was made out of snow. And he thought such a beautiful sign that only a grieving mother would know. He placed it on her nightstand and kissed the angel on his head. Then placed him next to his mom as she slumbered in bed. I think I’ll stay here with Mommy and visit her in her dreams tonight, She misses me dearly and needs to know I’m all right. Santa made his way to his sled, And wiped a tear from his eye. He fell to his knees and managed to cry. Merry Christmas to all the grieving mothers across this big land. And let it be known your angels are with you holding your hands….”

…Amber left me two white feathers on Wednesday. One in my kitchen and one underneath the bag which contained her oxygen cylinders in my car.

17th December 2021

Her funeral is arranged for Wednesday 22nd December… I don’t know how to breathe. I don’t know how to be here without her.

My house used to be my sanctuary, it used to be my place to retreat, to relax, to meditate and to be creative. It feels alien to me, unfriendly, empty, quiet, dead… from the crazy invasion of hospice workers, doctors, nurses when I first got Amber home. The loud hum of her oxygen concentrator, the beep of her monitor (that I hated but now miss), the intense routine of her medication and feeding times, the way I could cuddle her whenever I wanted to (a novelty and dream come true without asking permission from a nurse in the hospital), her sweet face next to me when I went to sleep at night and woke up in the morning…that brief dream is gone. Over. Finished. I feel empty, lost, heartbroken, shattered, desolate, devastated…none of these words are enough. None of them describe how I feel. None of them come close.

The only sound now is the incessant alarms on my phone, set two hourly for her medications and her feeds. I’ve managed to turn off the overnight ones but the daytime alarms goes off constantly. I can’t turn them off yet. I only just emptied her bathwater today. I keep fairy lights lit constantly in the bedroom as she never slept in the dark and now it seems neither can I.

I even miss the hospital wards, desperate as I was to escape them. I feel institutionalised and miss the routine. The safety of knowing she was cared for by the best medical treatment, by interventions, by doctors and nurses I trusted and came to know well in that place. Of knowing she was ‘ok’ and THERE and mine.

Her pram sits empty in my kitchen. Her playmat where it was before she passed, with her bear from her flight to Glasgow lying on it, along with her firefly pram toy. Her fluffy blanket is exactly where it was in her baby box where she’d sleep in the living room and I have three babygrows she wore and I haven’t washed… they smell of her. I need to do washing but my airer still has her washing on it and I haven’t been able to clear it yet so I have nowhere to dry my own. I can’t move any of it.

I wear a fleece heart she slept with next to my heart, I don’t know that I’ll ever be able to be without it now.

I missed her so much on Wednesday I went and sat and cuddled her in the funeral home for an hour and a half…

Today I was there for three and a half hours. I just sat, read to her (‘Guess How Much I Love You’ and ‘The Velveteen Rabbit’) and sang (‘The Lion Sleeps Tonight’) I cuddled her and cried. I looked at her sweet little face, she just looks like she’s asleep, dreaming but will wake up any second. Except she doesn’t. I cried more. I cried a lot.

I rewrapped her in her blankets, rearranged the satin lining they have placed in her wicker casket and pinning it as neatly as I could (I hate pink satin). Made sure that her teddies (her rabbit, her hare, her owl and her fox. The fox I will bring home on Wednesday, no doubt to cry and rage and despair over at the devastation and unfairness of her loss) were arranged just so, that she had her amber beads in her left hand (part of a necklace I was given as a gift whilst pregnant. I have split it in half, she will keep half and so will I.. a link between us… I hope you don’t mind Alex, it felt ‘right’) and her silver heart in her right hand (cut out from the silver keyring I now carry… part of my heart forever gone). Sprayed my perfume on the knitted square which lies beneath her head. Tucked the mould of my kiss and the pawprint of Pandora into her blankets (Pandora’s pawprint at her feet where she slept adoringly, my kiss by her cheek that I kissed so many times I lost count.) Added her monkey teething ring she used to cling to in hospital. She has her hare with a gauze bag around its neck, it contains a moonstone (my birthstone), a silver heart, a lock of my hair (as I have a lock of hers). The book ‘Guess How Much I love You’ is placed to one side carefully. Photographs of her and I, Coreigh, Oliver and I, Pandora and a beautiful rainbow are place where she can see them, her family around her. I straightened the knitted pink hairband my sister Kim bought for her, it covers the shaven front of her hair perfectly. I was going to keep it as a memory but I get a strong impression Amber wants to keep it herself, she looks so beautiful of course she can. I’d give her anything she wanted if I could. I’d give her my own breath again if it would bring her back to me as it did before. A little knitted square is tucked into her babygrow.. I wore it in my top against my skin before taking her to the funeral home… we got it in scbu, we would each have a square and I’d swap them daily when she was first born so we could smell each other all the time. It was never natural to be apart, even more unnatural now.

The time with her passed so quickly today. The owner of the funeral home looked in the room, he said we looked beautiful together. I cried again.

The lady who works on reception came in with coffee, I said I was sorry for staying so long. How it was silly really, her spirit is no longer in her body but I missed the weight of her in my arms. Miss gazing down at her little, delicate face. She said it was fine, whatever helped me to cope, to ‘get through this’.

Nothing can help me ‘get through this’. I just want to see her wide, dark, wise eyes open and watch me again. I want to feel her warm and snuggled in my arms. I’ve wrapped her in one of her warmest blankets, a heavy fleece lined cable knit, I don’t want her to be cold.

I’m dreading next Wednesday. I feel everything acutely. I feel nothing.

I miss you little fox.