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Glasgow Hospital… the ‘Walk’

Started writing on 11th January 2023 (Not felt ready to post until August)

I’m writing this at the suggestion of my psychologist Anna. Technically it’s part of my therapy for the ptsd, this ‘walk’ is one of my many recurring flashbacks, it’s one of the trauma triggers I have. I decided to publish it on here, as it also talks of Ambers and my journey together, that is after all one of the main reasons for this blog and it’s been a while since I continued writing of our story during her life.

I have run through this walk endless times in my mind, deliberately if I choose to (which I generally don’t, the result is me collapsing into sweating, crying, breathlessness), more often it happens randomly, unexpectedly and spontaneously. It’s so vivid. I can see it, hear it, smell it, feel it. It’s like literally being there again and as I’ve tried to explain in my previous post on mental health, my mind can’t differentiate between ‘then’ and ‘now’. It’s crippling.

Anyway, it’s been the focus of a couple of my recent EMDR sessions and Anna suggested that I write out the ‘walk’ as a way to help process the trauma associated with this particular memory. To write everything as it ‘is’, to see how strong it’s effect is on me after our last couple of sessions. I’m going to write how I still ‘see’ it.

So, here goes…

My room is warm, I’m exhausted. Every morning is the same. I drag myself out of bed, it’s a really comfy mattress though I still hardly sleep and flick the kettle on while I have a shower to try and wake up. Breakfast as always.. pain au chocolat or a pot of porridge which I add hot water to. I don’t enjoy it, it’s simply functional, it’s easy and I don’t have to go to the communal kitchen. I just want to be with Amber as quickly as possible. Eating and especially washing clothes are both a huge inconvenience. My wardrobe is limited, all cosy, comfort clothing that I can sit in all day, always layers as it’s getting cold outside but is like a sauna on the NICU ward, I have to be able to strip off to a vest top when I’m there. Fluffy socks so I can kick off my ugg boots in Ambers room.

I pack my bag for the day, my phone and charger, purse, a magazine that I probably won’t read but take with me every day, a bottle of juice to drink on the ward. More nappies and a clean swaddle for Amber, her book to read to her ‘The Lion, the Witch and the Wardrobe.’ The third notebook I am filling with medical notes about Ambers treatment, this never leaves my side.

I open the room door, it automatically locks when it closes. Did I remember my key card? My stomach flips as I check, as I always do every morning. Not that it matters, reception can let me back in my room but I want to try avoid people and conversation if I can. I’m too tired, too desperate to get to Amber as fast as possible. I can feel the fear which always sits heavy in my stomach. How is she? Has she had a good night? What will today bring? No phone calls from the ward overnight so nothing too serious could have happened. I try reassure myself again.

I turn left out my room, walk down the short corridor, past the family bathroom door, flash my keycard at the door to open it. The door opens automatically. You’re not supposed to push it open but it opens so slowly, it feels like a lifetime rather than just seconds waiting for it. This corridor always is empty. It is lined with doors to other family rooms but I never see anyone even though I know the parents accommodation is full. I mainly only see other parents in the kitchens or occasionally the laundry room.

Through a small hallway to the left again, past the beautiful, old fashioned rocking horse. The wall next to it is covered with thank you cards and photos of babies and children who were in the hospital at some point. I try not to look too closely, I know some of those cards are in ‘rememberance’ and it’s not something I want to think about.

Down the corridor, past the reception and out through two double glass sliding doors, some mornings I get spotted at reception and have a brief conversation. The staff are all lovely but I don’t want to be delayed. I turn slightly right before crossing through the accommodations small car park and through the gated entrance. The gates are broken at the moment so they are never closed but will be getting fixed soon apparently.

Into one of the main outdoor carparks for the hospital, I think this one is for hospital staff but I’m not sure. Walking across the tarmac towards the small walkway under a big tree I’ve become fond of in this concrete desert. Dipping in and out of parked cars, it’s busy at this time, around 8.30am, I like to be at the ward before 9am to catch the morning ward round and speak to Ambers doctors. I’m trying to stay calm, trying to enjoy this brief moment of fresh air before the claustrophobia of the ward, I touch the bark of the tree and a leaf as I pass. I want to feel a brief connection with nature, to try find a moment of peace in it but the traffic is noisy and the hospital is visible and I can feel the panic and desperation rising. I walk too slow, I just want to be there with her now.

So leaving the little walkway I turn left onto the wide pavement, this is the main road which runs through the hospital grounds. One of the large main entrances is now behind me and there is a continuous line of traffic coming in. I have a full view of the hospital now, huge and looming slightly to the right of my line of sight. I veer towards it, crossing a wide grass verge and wait impatiently to cross the road, take a chance and run in a brief break in the traffic to the other side. There is another large outdoor carpark, another wait to cross at the entrance to this one. Ahead of me now is a long, long path to walk along. It heads straight to the main hospital but there are so many large buildings in sight, three multistory carparks, one across to the far left, another to the right, another I can’t quite see yet but I know it will come into view once I reach the end of this path, there are other large buildings too, I have no idea what their purpose is. I can see the more colourful children’s hospital, to the right of the main hospital.

The path is long and smooth and fairly straight. To my left is a sort of low, dipped grassy area, it’s all fenced off and has warning signs to stay out. It looks like it might be marshy, maybe an overgrown pond type thing? I’ve never looked closely, I’ve not paid too much attention to it. My focus is always on the building ahead. To my right is a grassy area, occasional benches, a few immature trees. I suppose it’s meant to make the approach less intimidating, maybe it does a little, I like to see some green but the hospital itself is terrifying. This bit of the walk drags, it feels as if Queen Elizabeth Hospital is looming above me, maybe it’ll crush me one day, perhaps this is where I will completely fall to pieces. My breath is shallow, my heart is pounding, the fear heavy and solid in my stomach, I’m trying to remind myself to breathe, trying to hold back the tears, I don’t want to break down in front of all these strangers on this walk. Maybe they’re going to work, maybe they’re visiting, maybe their world is falling apart too. It doesn’t matter, their world is not mine. Their pain is not mine. Right now all that matters is Amber and I and I need to try keep it together for her.

This walk gives me time to think, to tear myself apart with questions and thoughts, my mind is never silent, never at rest, never peaceful except in the moments when I have Amber in my arms and we are in our own little world together, safe and one.

What if? What if she had a bad night and they just didn’t call me? What if she has a bad day? What if they won’t listen? What if they can’t help her? What if they can? What should I do about work, bills, paying my post office cover? What is my daughter Coreigh doing right now? Amber… What if she dies? What if she lives? What if I can’t cope? What if I get sick? What if I can’t manage financially? What if today is the day that things get worse/better/improve/become more hopeful?

Why me? Why her? Why did this happen? Why is my baby not healthy? Why did my daughter have to get this rare chromosome disorder? Why is life so unfair? Why is her father so unsupportive? Why doesn’t he realise how important she is, too busy playing the victim himself? Why won’t he make the sacrifices he should be making for her? He’s constantly gaslighting me and I don’t have the energy for it. Why have I got another migraine.. why won’t they just go now I have my betablockers again?

How I am going to cope? How could I take her camping with oxygen and a sats monitor? I want her to experience the joys in life. How am I going to shop? How can I make both her life and my life easier for us to try and have some normality? How am I going to manage when she gets bigger? How am I going to approach the doctors today? How am I going to get through today? How will I manage to SEE anyone when her immune system is so fragile?

When will we know? When will I be able to take her home? When am I going to see my daughter Coreigh? My mum? My dad? My dog? My house? My friends? When should I eat lunch?

Am I ok? Am I going to have a heart attack/panic attack because I can feel my heart thumping in my chest and I can’t breathe properly. I keep reminding myself to take a deep breath because my breaths are so shallow. I’m dizzy/exhausted/dehydrated/aching… am I getting ill? If I do I won’t be able to go on the ward and the terror of that is overwhelming.

Where will I be able to get everything she needs? What support can we get? What do I need to buy for Amber now? More tapes for her tubes? Add it to the mental list in my head. Who do I need to call or message today? My mum? My daughter? When did I speak to them last? Is her father going to be difficult today? Will he make me cry/angry/upset again? Will he finally send some money to help? It’s expensive staying here… food costs a fortune from the hospital and I can’t survive just on the cafeteria food it’s so bad. At least £20 a day in the Marks and Spencer shop to buy salads, fruit and a decent meal to heat up. Does Amber need more nappies? Where can I buy them? I’m so angry, angry at the unfairness of it all. Angry at myself for being so tired. Angry at the mum I pass pushing her pram with her healthy baby in it. Angry at the world. Angry that Amber has to suffer and have a more difficult life. Furious, so furious at her dad…try not to think about him… he’s not important, he’s shown his true colours.

Grateful.. grateful my daughter is still here with me, she’s such a fighter, so brave, so strong, so beautiful…. overwhelming love… I cling to that, to love for my Amber.

So many thoughts on this path, on this walk. And all the while the hospital looms, getting larger and closer. I look up at it often, it makes me feel very small and I wonder about all the people in there now whose lives are maybe also falling apart. How many people in there will die today? How many will get bad news or good news? How many tears will be shed in that hospital in one day?

At the end of the path at last, to my left is an undercover seating area, to the right a huge wide path to either pass or enter the main hospital. There is a long row of busy bus stops curving around the front of the hospital. A taxi rank too. It’s like a little city, crazy busy. So many people, I walk past not really seeing anyone, averting my eyes, I feel invisible, not quite there. I’m not really part of the world anymore, my world is the ward and Ambers big dark eyes, beeping monitors, flashing screens and learning complicated medical procedures and medication routines. My world is planning a new life, with my complex, complicated little girl and making it the best I can. Right now my world is keeping her alive and as healthy as possible. I don’t matter too much in my mind, though I know I HAVE to put myself first enough to keep healthy for Amber and Coreigh. Whatever else, my daughters need me. Giving up is not an option. It is the only certainty I have in life right now.

So I walk to the right, walking past the huge main entrance, always two security guys stood at the end, they check people have masks, ask you if you know where you’re going, offer help and directions. It’s usually the same two guys in the morning. One always smiles and says hello, they recognize me now, I walk past multiple times a day. Once he approached me to check I was ok, he’d overheard an argument the day before with Ambers father, could hear him shouting down the phone at me. Had seen me in tears and shaking and trying to compose myself before going inside for lunch. Anyway, I smile as I pass briefly but carry on, there’s an open space to my left, enclosed in a ‘U’ by the hospital. There’s always people there smoking, talking, waiting, milling about. If I look up at this point I can glimpse the helicopter landing pad on top of the hospital. Once one landed as I passed, the sound of it was loud, overpowering. The noise of it echoed off the surrounding buildings and had I not known where the landing pad was it would have been difficult to pinpoint where the sound was coming from.

The children’s hospital entrance is approaching on my left now. It is attached to main hospital by long faceless corridors inside, (eventually I’ll have to learn the route through so I can avoid walking some of the way in the dark after midnight) outside it has it’s own entrance. Ahead of me I can see the third multistory carpark but I don’t need to walk that far. The children’s hospital building curves around to the left and it’s there I follow. I stare at the children’s building every day. I know that it will become familiar to me. If Amber does well, if she lives, that is where she will be for her heart surgery. For her G Tube fitting. For any complicated treatment she may need in the future. Every day on this walk I remind myself that even when we leave, when I get to take her home, we’ll be back. Probably often, regularly. This, along with Raigmore Hospital in Inverness will become a ‘second home’ for us.

Turning the corner I can see the windows to the NICU department now, it is in a separate building to the right of the path, ahead of me. This is the building which houses the maternity wards, fetal medicine, the NICU, the SCBU. This is the building I first got Ambers diagnosis all those months ago. This is the building that the bottom first fell out of my world and that has now become my world, my life, Ambers life. It is here that I spend my precious moments with my daughter.

To my right is a covered area, it is here I sometimes sit for a breath of air, to try and compose myself, to cry. Surrounded by other families who are in their own darkness, it is the area people come to smoke, to shelter, to grab a moment in the terror. There is childrens play park just behind here too, a small area of gardens that sometimes I circle briefly before returning to the ward.

Every morning though, I bypass this area quickly, my only thought is to reach Amber. There is an overhead corridor which passes from the maternity hospital to the childrens hospital. I walk under this, past the ambulance entrance into maternity, around to the front entrance. There is a carpark attendant who sits every morning, singing and rocking to his music on his headphones, I can hear the low buzz of his music. At the entrance to the hospital I put on my face mask, sanitise my hands, say hello to the same security guard who every morning greets me and wishes me a good day. I don’t linger to chat, he knows me by sight now and always smiles.

I pass the cafe, I walk past the toilets, through the double swinging doors, down a long, depressing corridor. Past the fetal medicine department where I avert my eyes, right along to the end to where the lift goes up to the NICU department. I try not to glance to my left here, that’s where the labour ward is and its so hard, so heartbreaking when I see other, excited women going through the doors to have their babies. They don’t need to see my pain and I feel guilty that I find their happiness so soul crushing.

Usually the lift comes quickly, if not I get impatient and turn to run up the stairs instead. There is then a small waiting room outside the NICU, I ignore this, NICU security is through a fingerprint access. They register your fingerprints the day of your babies arrival so you don’t have to wait to get in. I find myself getting irritated each day by this, it should be easy, it IS easy but I’m so desperate to get in that often it takes me a couple of tries to get my finger read clearly, I sanitise first and my fingers are damp with the fluid. Through the doors, towards the front desk and then turn to the right down through the ward. Amber is in a small private room on the left, I smile and say hello to her nurse outside her room, walk in, smile and coo and my girl and kiss her gently before turning to scrub and sanitise my hands again before I can actually touch her.

My breath can now calm a little, I can get all the updates from the night, find out the plan for the day, prepare my questions for the doctors on the ward round but most importantly I can sit and watch my daughter. I can hold her hands, stroke her face, cuddle her close, sing, read, talk and breathe with her. I can try to just enjoy my time with her and every day, EVERY day I try so very hard not to sit and cry when I’m with her.

Our time together is so precious, I want it filled with smiles and love.

It’s OK to not be Ok

November 6^th 2022

TRIGGER WARNING (this post talks about baby loss, grief and ptsd)

(I refer to ‘mums’ throughout this post as it is we who have to live with the knowledge we are carrying a baby with serious health complications and all the physical and emotional aspects of pregnancy alongside. This isn’t intended to dismiss the impact on fathers, family and friends, the repercussions of trisomy have a devastating ripple effect on everyone. I can only write this from my own perspective and my own experience.)

I’ve been trying to decide what I want to cover in my next post and it seems I’ve have delayed and delayed writing! There is so much I want to say and I’ve been torn about when and how to continue the early days of Ambers and my journey, from pregnancy and then everything about our time together in ‘this’ world. The year has rushed on and I have remained stuck and struggling with my words.

What I’ve come to realise though is that I’m finding it hard to relive it all which makes writing about it difficult. My mental health this last couple of years has taken a nosedive into a place I never imagined I would find myself and I feel like I’m swimming through glue and not really getting anywhere.

So.. I’ve decided to try and put this into words. The experience of losing my daughter and how it has affected my mental health. Things which can sometimes help a little, things which make it worse. How people around me have reacted, how their reactions impact on me. About how it feels to be a ghost in my life while the world continues on. I want to talk about how it’s ok to be not ok, even when the rest of the world often disagrees and thinks you should be ‘healing’ by now. I don’t imagine this is going to be the cheeriest of musings but I do think it’s important. I want other families to know that they’re not alone. I often feel like I’m going crazy but I know now, that for a parent who has lost a child this is normal. This is MY new normal and I somehow have to embrace it whilst still trying to live without Amber.

I’m going to start with all the hardest things and try to end this post with the things I find helpful or most comforting.

In my ‘letter’ to Amber which was read out at her funeral service (this letter is also published now on this blog) I said I felt like I had been crying forever. I still feel that. My tears now though are never filled with hope or small moments of joy, I’m only left with the heartbreak and despair. My biggest fear, that of losing Amber came true and with that loss was shattered the fragile hope that I had clung to throughout my pregnancy and her life. So to give some context of how I have come to be as I am today I need to go back and explain a little of our journey.

When I first got Ambers diagnosis I knew nothing of Trisomy 18 and what followed was a rapid, intensive journey of research, learning and decisions, a journey that I know is familiar to every family who receives such a diagnosis. I’ve lost count of how many people I have spoken to, starting of course with my fetal medicine team and then Ambers paediatrician, Soft UK, other mums, my sister and then thankfully Dr Martin McCaffrey.

There was really no time to relax, I spent hours on my computer and in those moments I could ‘just sit’, all I could think about was the most probable outcome that I would lose my daughter and if I chose to continue and give her a chance at life, this would likely be during my pregnancy.

Initially I decided no choice could be made until I knew more, I was already 20 weeks pregnant though so I could feel Amber kicking, moving constantly, she was so ALIVE and the thought of ending the pregnancy was horrific. Having had two miscarriages so recently, the second of which had been extremely traumatic, Amber was my rainbow baby and the thought of losing her unimaginable.

I lived day by day and decided I had to try get to at least 24 weeks so she could have her birth certificate. I met her paediatrician at 25 weeks, Philine, who was so wonderful that alongside Alison (my fetal medicine consultant) I made the decision to continue my pregnancy. I think deep down I always knew I would but that was when the choice was absolute. By 30 weeks I realised that I had switched from preparing myself for losing her to planning for her life. By the time I went into hospital at 37 weeks to have her I was filled with hope but engulfed in fear.

We spent 10 weeks in hospital, Amber and I and then 2 weeks at home. Weeks filled with beautiful memories and every second with her was so precious. I have so many gorgeous memories of her and I cherish every one but at the same time I find that I struggle to focus on the ‘happy’ times.

I always knew that no matter what happened, whether Amber died before birth, after birth or even had she lived that there would be trauma, grief and difficult times. I tried to prepare for loss, whether that was my expectations of what her life was supposed to have been or the actual physical loss of her and I really never had any idea of how to get through it all and how to survive myself. I know now, deep down I was already struggling with the trauma of my two previous miscarriages and that I hadn’t (still haven’t in fact) dealt with those losses. As other mums who have received such a diagnosis will know, you go into autopilot. Your own health and needs often fade and your focus is on doing what is best for your baby. You always have to be selfless when you have children but when you have a baby like Amber this is even more true. Their needs are so complex that yours take a back seat. Your days are filled with impossible choices, doubts, fears and second guessing yourself, trying to figure out what to do for the best, all the while praying that your little one will be one of the lucky ones. That they will live.

So the last couple of years have run into one another and there has been a constant stream of events which have been stressful, traumatic and combined have resulted in me feeling lost and broken, scrambling to figure out who the ‘new me’ is.

After Amber died and up until her funeral, in those early days all I could focus on was planning her funeral, cry, drive most days over 90 miles to see her and hold her in the funeral home, cry some more and wish for a sleep that I wouldn’t wake up from, unless it was to realise it was all a bad dream and she was still with me. The shock, disbelief and devastation were overwhelming and the only ‘peace’ if you can call it that was the long hours I spent with her in my arms, in a tiny room, sat by her tiny casket and hating that I would have to leave her at closing time. I felt physical pain at her loss, couldn’t sleep and missed the chaos of her routine. But I could still hold her, read to her, see her. My daughter was still in my arms and honestly I didn’t know how I was ever going to be able to walk away. It was utterly nightmarish and there was at least one friend who I believe was pretty horrified at how long I would sit in the funeral home with Amber in my arms. Honestly though, that’s the only thing that kept me going. The long silent drive along Loch Ness and the desperation to get to her was all encompassing and it was that which I clung to, that need to feel the weight of her in my arms.

I’ve always struggled with the platitudes that people say after you lose a loved one and since I have lost Amber I find them even worse. There is no loss comparable to losing a child and most people can’t comprehend that loss, not that you would want them to of course. I know that people mean well. I know they intend their words to be comforting. I know that mostly they haven’t got a clue what to say and I try to remind myself of that, every time someone says something to me that makes me feel worse.

‘It wasn’t meant to be.’ Yes it was. She WAS here. She was my daughter and she should have lived.

‘At least you got some time with her.’ Of course I’m grateful I had time with her, every second was the most precious in the world, that doesn’t make losing her any easier.

‘Well you knew you’d probably lose her.’ Just…No. It is the most unhelpful and hurtful comment.

‘You’re so strong, you’ll survive this.’ I’m not strong because I choose to be, I’m a grieving mother and I have another daughter whom I love very much. She needs me too.

‘Give it some time, time heals.’ Nope, I don’t believe it does. I think we eventually learn to live with the pain but it never goes away or heals, especially not when you lose your child.

‘She’s in a better place now.’ This one I particularly hate. The best place for Amber is in my arms.

‘At least you’ve got your other daughter and her little boy.’ Oh honestly this is a tough one.. I’m so unbelievably grateful and blessed to have Coreigh and Oliver. They have been my anchors to life this last year, kept me going and I love them beyond measure. I also love Amber beyond measure. This is an unbearable, hurtful comment. You don’t find losing a child less painful because you have another child. It doesn’t make your grief ‘easier’, if anything it makes it more complicated. I have worried so much this last year that Coreigh has struggled with my pain, worried that she may feel she is not enough, when she always has been and is my precious firstborn. She IS enough, she is my best friend and my reason for living. My heart is big enough to love her and to still feel eternal grief for Amber. There is no one or the other.. they are both my daughters and I know Coreigh has found it hard watching me crumble with pain, whilst I wonder how to support her with the loss of her little sister, all when I have to lean on her for support to get through each day.

I often feel guilty for having these thoughts. Am I being ungrateful? Is it wrong to feel angry when people say these things? Is it normal to want to rage and scream and fall to my knees to try and make people understand how I feel? I have learnt to take a deep breath, keep quiet, bite my lip and smother the scream that I actually want to let loose. I have cried and sobbed and clawed at the floor and pillows. Collapsed from grief more than once but to actually scream… well I’d probably frighten my neighbours! It is an exhausting pretence to keep up. (I will be using the word exhausting a lot!)

I did scream once, wholeheartedly and loudly alone in my car, away from anyone who could hear it. I needed to release it and it had got to the point I couldn’t breathe. It shocked me, the loudness of it. It was an alien, primal sound I hadn’t realised I was capable of. This is the first time I’ve told anyone I did it and yes, maybe I’ll do it again. I now know that’s ok.

About two weeks after Ambers funeral I realised I had a problem. In those first days after her death my doctor gave me diazepam, anything to try and numb me and allow me some sleep and escape from the pain. Wine didn’t help, I began smoking again two days after she passed (having quit for over 4 years this is just another thing to feel bad about, as now, I’m struggling to kick the habit again.) I cried constantly, with occasional times of numbness from exhaustion and barely slept or ate. It wasn’t just grief though, I had horrendous flashbacks to some of the most traumatic of moments. I lay sleepless in bed hearing the alarms from all the monitors that Amber had been attached to, her ventilator, the cpap, the heart monitors, the drugs monitors, her SATS machine. I would wake suddenly to beeps and machine screens of her heart rate flashing red, I could hear her, see her, feel her. I would sit outside on my step at night having a cigarette and see the lights of Glasgow hospital ahead of me as I walked up the main path. I could see the ambulance outside my house as it pulled up to bring her home. I could feel the recliner seat under me as I held my tiny daughter in my arms. I would see her face next to me when I rolled over in bed. I was back in the car watching the darkness as we drove to Glasgow hospital from Inverness praying she was still alive.

My mum would say to me it was normal to remember all the traumatic times but these weren’t memories. I was there, reliving it in the moment and I couldn’t turn it off, prevent it from happening or stop it when it did. It was all encompassing and my heart would race, I couldn’t breathe, I had panic attacks, massive anxiety and felt like I couldn’t sit with my grief because it wasn’t ‘past’ it was still present and very much real and in the ‘now.’

I had been speaking with a psychologist since late in my pregnancy, referred to her by Ambers paediatrician as my GP had been struggling to get me referred for support during pregnancy. She works with parents whose children are in SCBU or on the childrens ward. She (Tracy) is wonderful and gentle, knew all about Amber and our journey and it was she who diagnosed me with PTSD (post traumatic stress disorder) a couple of weeks after the funeral. A diagnosis I only associated with veterans, not something I knew anything about really and certainly not one I ever dreamed I would have.

So my year has consisted of what feels like the collapse of my mental health, sanity and sense of self. I was put on antidepressants (fluoxetine) almost immediately in the hope it would help ease the anxiety and help me sleep (it hasn’t) until I could receive trauma therapy. Tracy and my GP pushed to rush things along and though the waiting list is usually 6 months after symtoms begin, due to the ‘trauma’ beginning in pregnancy rather than at the loss of Amber, I was referred to the crisis mental health team (me!??!!) who referred me for assessment to the local mental health hospital. That appointment came through fairly quickly and after a long triage appointment, they immediately confirmed a diagnosis of Complex PTSD. (This is ptsd which occurs from a series of traumatic events or a prolonged traumatic event.) and agreed I would need treatment. Unfortunately, they couldn’t say how long the waiting list would be and so I would have to manage in the meantime.

I have been lucky to have the continued support of Tracy, even though I know her workload must increase weekly and even though Amber is obviously no longer an inpatient. The childrens hospice, CHAS has a wonderful chaplain who has also been a constant source of support, listening to me cry down the phone. Other mums who I began my Trisomy pregnancy journey with and who received their diagnosis around the same time (you know who you are xx) have been lifesavers, as have other families on the Trisomy support groups and of course SOFT UK.

My family and friends have been amazing, as have my neighbours. I feel I have been enveloped in protection and love by those around me. Even though they don’t understand exactly how it feels, those closest to me all support in their individual ways and each of them gives me something unique that only that person can give, each of them has a little understanding and together they help me get through and survive each day.

What I find hard is explaining what I need, how can I when I don’t know myself. The only thing I want is the only thing no one can give me, Amber. I know I have not been the easiest person to be around this last year. I often find it difficult to express myself, even to those closest to me. My mind feels slow and confused, I am constantly exhausted, I barely sleep, I feel surges of anger at Ambers father and all my hatred has been poured into him (not that he knows it, we have no contact at all but this is a tough one for me as I am not a person who ‘hates’. It is an uncomfortable feeling, especially as I can not forgive him for his behaviour and actions throughout my pregnancy and Ambers life.) I have been hopeless at keeping in touch with people, messages pile up in my inbox and phone calls often go ignored. Other than my daughter, my mum and dad and my sister, there are really only a few friends I have the energy to keep close contact with, everything else is mostly too draining and overwhelming to handle. I have become a bit of a hermit much of the time.

The anxiety has not gone away but I have mostly become better at managing it, I can walk around the supermarket or a shop without having a panic attack or meltdown, holding it in until I get back to my car. I can smile at people in the street and wish them good morning. I can usually get through a shift at work and contain my tears whilst serving customers, though I often sneak into the back and break down in between. The flashbacks, well there’s nothing I can do to control them, they still come at the most inconvenient and unexpected times. I have a crystal I carry everywhere, I held it through my labour and c section with Amber and I cling to it now to try and ground myself with something ‘real’. Orange essential oil on the advice of my psychologist can also help ground me I’ve found.

Almost a year on after losing Amber I struggle with the expectation of people to be ‘moving on’. Not those close to me, they don’t expect that but others who think I’m doing better because I’m back at work or sometimes wear a little makeup. Often I’m asked how I am, I used to worry about how to respond but now I don’t. I allow myself the honesty of saying ‘No, I’m not alright.’ I then usually change the subject because I’ve come to realise that actually, most people unless they are close to you, don’t actually want to hear about how far from ok I am. It’s a passing question to them, a hope that ‘I’m fine and getting on with it.’ Not many people know what to say to you when your baby or child has died, nor do they want to imagine or focus too closely on it. Sometimes people then say, ‘Oh, but you are feeling better than you did though? It’s got a bit easier?’ Once I was told, ‘Oh but the spring is almost here, you will start to feel better and heal.’ This, less than three months after losing my daughter. These are the times I feel the scream and have to hold back. I can not overestimate the incredible usefulness of deep breathing!

It’s a horrible place to be, like I said, I feel like a ghost in my life. I live hour by hour, days go by and I don’t know where. The world continues on around me and I don’t feel part of it. Everything I was, everything I enjoyed has become uninteresting and unimportant. I think of Amber constantly, the longing for her has not got less but I haven’t grieved. The ptsd is all consuming and often trying to focus on the beautiful memories of her leads into more flashbacks and reliving of the trauma. It adds to the exhaustion and feelings of hopelessness. At times I have felt like I’m going mad and that my life will never be ‘normal’ again. I put a mask on for the world so often that I don’t know who I am anymore.

My trauma therapy started in September, much quicker than I expected. After a few weeks of assessment and talking it was decided that EMDR (Eye movement desensitization and reprocessing) was most likely going to be the most helpful for me. I’ve had a bit of a crash course in PTSD, so for those of you who know little about it here it is in brief.

Normally, our brains process memories, mostly during our REM sleep, moving them from our short term memory to our long term memory. Our brains then understand these things are ‘past’ and though obviously not all our memories are happy because they have gone through the correct channels they are processed.

During trauma our brains natural coping mechanism can be overloaded and these experiences can become frozen and unprocessed in the wrong part of our brain, in a raw, emotional state. PTSD or CPTSD can occur from either a single trigger event (ie a car crash) or continuous trauma (ie War or as in my case incidents during Ambers ‘journey’) These can be triggered as your brain continuously tries to process the memories but they are ‘stuck’. So you can end up with terrifying flashbacks which feel like ‘now’, anxiety, panic, despair and also often physical symptoms. I often find my heart racing, my body tensing up and find it hard to breathe, as well as having headaches, physical aches and pains and insomnia.

EMDR uses bilateral stimulation, typically eye movements or tapping (I use the tapping method with my arms crossed at my chest and tap alternately on each shoulder during treatment) to recreate REM sleep to help process the traumatic events you want to treat.

I’m finding the therapy hard work, every Friday I re-live part of a selected trauma under a controlled environment to try and reprocess it. One memory often leads into another that I had forgotten, it can lead into unexpected places and it is in itself traumatic. An hours session leaves me drained, tearful and utterly shattered. I talk myself into having to attend each session because I can’t carry on like this and I want to be able to grieve my daughter and remember the happy moments I had with her. At the same time every week I try find excuses not to attend and the dread begins every Thursday night. I think it is working a little, gradually, my psychologist Anna believes it is, though she says I still have a long way to go.

I still speak once a month to the hospice chaplain, I still have a monthly check in call with my original psychologist Tracy, I am still on anti depressants. Ambers paediatrician calls once a month too just to have a chat.

I’m sorry this is such a dark post but at the same time I think it’s good to get this out in the open. Mental health problems were never something I thought would happen to me. Apart from mild teenage depression, I have generally been an optimistic type of person and found happiness in the ‘little pleasures in life’.

I just want other mums (and parents/families/friends) to know it is normal to feel like your going crazy at times and to be able to admit it to others. It is ok to be angry. It is ok to feel impatient. I have learnt from the psychologist that losing a child is not classed as a normal bereavement, it is in itself classed as a trauma. Never mind everything else that we go through as Trisomy parents along the way.

I also believe that despite it all I have been lucky, I was lucky to have such a wonderful little girl, a warrior child who fought for life with everything she had. A baby girl with an old soul, I’m sure she had lived before, she had such wisdom and calmness in her eyes.

My coping mechanisms for now are a bit hit and miss but I am trying! My daughter Coreigh is my lifeline, we have morning coffee over video call most days, I hug my grandson, my dogs are a constant source of comfort and cuddles, I clean A LOT (doing anything to distract yourself is another trauma symptom which helps you avoid thinking), I’ve managed to actually read a book, I can listen to music again (sometimes), I try to do yoga, I call my closest friends or can turn up at their house if I need a hug. I created a beautiful garden for Amber and she has very expensive taste! She’s definitely around me all the time, I can feel her and she lets me know exactly what she wants! I’ve even started to venture into my craft room, though usually half heartedly (it should be Ambers nursery). I talk to Amber all the time and I still carry her (ashes) to bed every evening and kiss her goodnight. Is that a bit crazy? I don’t care if it is… it’s become routine and feels impossible to change now. Often I just sit outside in her garden and look at the stars, it makes me feel small but also I imagine her up there dancing on them under the light of the moon.

Dr Una Mcfadyen messaged often me after Amber had passed, in one message she told me about a song she had just heard about how ‘stars are the holes in Heaven.’ That’s how I like to think of my little fox now. Peering down at me through the stars, always with me until I can hold her again but for now having fun with all our Trisomy angels while they wait for us.

But I still feel broken. I am not healed. It is not easier. I cry every day.

So to all of you who have an angel in the stars, I understand and I send you love.

Ambers 1st birthday approaches… My letter to my daughter.

19th August 2022

I haven’t written on here for a while, I’ve been struggling with the ptsd and anxiety. Trying to find a balance to live each day amidst life which just continues regardless, the world rushing by as I feel stuck and hopeless and unable to see much light in the darkness.

As Ambers birthday approaches, far too fast, I am hit daily with memories of this time last year. My energy levels are very low, my sleep patterns horrendous, my emotions unpredictable and my brain feels slow and forgetful. I recently made the decision not to return to one of my jobs as a glassblower. It simply doesn’t feel safe right now to be working on a 1200 degree blowtorch and I struggle in company often too, so having to have long chatty conversations with happy tourists is beyond me right now. I have instead taken a job at a local fuel station, to give me some breathing space while I finally undergo trauma therapy which began around a month ago. The serious therapy is yet to begin but I am practising grounding techniques ready to start EMDR (Eye Movement Desensitization and Reprocessing) soon.

I have decided to share my ‘Letter to Amber’, I wrote it for her funeral service while I wept and tried to find the words to do her justice.

This is one of my many letters of love to her, I’m sure there will be many more that I will write as time terrifyingly moves on…

Dear Amber,

I don’t remember a day when I haven’t cried.

It seems like I have been crying forever and I can’t imagine a day now when I’ll ever be able to stop.

I cried with happiness when I found out I was pregnant. With fear that I’d lose you before I even got to my first scan. With relief to see your heartbeat on the screen at 12 weeks. With joy when it was confirmed that you were the girl I’d always known in my heart you were. With devastation when I got your diagnosis of Trisomy 18. Edwards Syndrome… I’d never even heard of it and it brought with it months of research, decisions, discussions, unknowns and heartbreak. A difficult, incredibly stressful pregnancy where I lived from scan to scan, listening to your heart beating strongly at every midwife appointment and struggling to accept that you weren’t as healthy as you sounded.

I snatched joy where I could, I loved seeing you on screen… ‘Edwards babies don’t move much’ I’d read and yet you never stayed still during scans. When Mairi was trying to find your heartbeat she’d have to chase you around as you shifted constantly and then Alison would chase you around during scans! It was the start of you proving to everyone you were stronger than expected. I loved my ‘bump’, watching you grow, feeling you move and talking to you as I walked by the river with Pandora was one of the few moments I felt any peace during pregnancy. Finding out your spirit animal was unexpected and now everyone knows you as ‘my little fox’.

‘Not compatible with life.’

That’s what I was told at your initial diagnosis, you were not expected to reach birth or to live if you did. I don’t know when I really started to believe that may not be true but gradually my plan changed from preparing for losing you to planning for your life.

I will be forever grateful to our doctors and nurses, Alison, Allie, Sheena, Mairi and of course Philine. You all kept me going, answering endless questions, listening to all my research, my thoughts, my fears and my wishes. Listening to advice I’d been given from Martin McCaffrey in the US, that actually Amber had more of a chance than had been assumed. Thank you for never running away from my notebook, keeping me going and never saying ‘no’ to anything I asked of you, no matter how unlikely you thought the outcome may be. Thank you for helping to create a complicated and detailed plan that brought my little girl into this world alive and for making sure that everyone, in every department knew about her in advance, not just in Raigmore but in Glasgow and Aberdeen too. Thank you to all the other doctors, nurses and others who dedicated themselves to Amber and myself after she was born.. there are so many of you, far too many of you to name here but all of you are amazing and you will all stay in my heart forever.

I have to mention my sister Jo-anne here too, as a doctor she guided me with advice and difficult choices but she also sent me daily silly messages to make me laugh. Spent hours on the phone while I cried and reassured me that all my decisions would be led by Amber herself. She taught me to trust myself with Amber and her life.

Seeing you Amber, in theatre for just two minutes when you were born was amazing, you were even more beautiful than I had known you would be. Seeing you whisked away and having to wait almost 6 hours to see you again felt like a lifetime and when I was finally wheeled through you swept my breath away. I was exhausted but couldn’t take my eyes off you, tiny, perfect and covered in tubes, wired up to machines I didn’t understand yet. And your hair! So much thick dark hair… no wonder I had terrible heartburn when I was pregnant!

You have been through so much, ventilated three times, endless scans, xrays, blood tests, surgery, the tubes, the needles… so many needles they struggled to get cannula in you any more. You were poked and prodded and on so many medications I lost count. You scared me more times than I can count, a few times I thought I’d lost you, at least twice on scbu, the terror of the transfer to Glasgow, and home of course, at least twice at home where my breath became yours. I became your expert, your advocate as well as your mummy but unable to do all the normal things with you.. I remember being jealous that I couldn’t change a nappy straight away and the first two times I held you it took three nurses, 20 minutes to lift you into my arms, where I hardly dare move I was so terrified of knocking the tube in your throat.

All babies are beautiful but you were in a world of your own. Your personality for such a tiny little girl was powerful and feisty and brave.

I shouldn’t have been surprised, after all when you contacted my Reiki master Elizabeth while I was still pregnant asking for an attunement, refusing Reiki 1 and wanting the Masters immediately I knew I was carrying an exceptional little soul. She said you had beautiful energy, she was so right.

In those first days when so much of you was covered in wires and needles I would sit and cuddle your tiny right foot, talking and endlessly singing ‘The lion sleeps tonight’ on a loop to you. It didn’t take long for you to start waving that foot at me as soon as you heard my voice, demanding I cuddle it more! You have the most amazing feet, long and elegant but with a crazy short big toe and two little webbed toes on each foot. Those funny little feet that I longed to kiss but couldn’t for weeks until you were out the incubator. How many hours have I massaged those toes for?

Your rages became legendary on scbu! You battered everyone with your little fists, sometimes using the splint keeping your cannula in place, sometimes whipping people with the tubes. You’d have everyone trying to figure out what was wrong and it could be something as simple as your toes needed covering with your blanket and you’d immediately go quiet and be your sweet calm self again! When you finally got to wear clothes you’d rage when your nappy needed changed but go silent as soon as a popper or two were undone… it didn’t matter if you had to wait while I got out a clean nappy so long as I undid your baby grow first you’d be quiet and happy.

You didn’t really cry so much as squawk .. you sounded like a baby pterodactyl, I missed your voice so much, you never really got it back after being ventilated the second time in Glasgow… instead you chittered like a little bird. Still.. the nurses in Glasgow witnessed your rages, silent though you may have been you had a way of expressing yourself!

You hogged the SCBU Ipad, it wasn’t really your fault.. we can blame your nurse Kim who would play you Disney lullabies, placing it face down so you could watch the chalk drawings on screen while you were still in your incubator and ventilated. No one else got much chance though… if the Ipad was missing it was usually with you! I bought you a kindle fire in the end of your very own, good job as we needed it when we shared our room in the children’s ward.. it kept you peaceful when I went to shower!

Your sugar addiction.. not something I’d imagined my tiny baby to have but necessary to comfort you through endless blood tests. I still have a sucrose supply in my kitchen brought home from Glasgow with us, it was clearly a habit you didn’t want to give up.. along with your less desirable morphine addiction!

Those big, wide dark navy eyes of yours… always so watchful, I was memorised when I saw your eyes open properly for the first time. If ever a soul has lived before I knew you had. You often had a knowing and wisdom that would take me aback. You were very good at rolling them at appropriate times too, you’d make everyone laugh as it was as if you were reacting perfectly at what was happening around you.

By the time we got home I swear you’d learnt how to set off your sats monitor, if you were hungry or needed a nappy change. I’m certain you deliberately held your breath so it would beep at me because you knew I’d come running and then one second later you’d be at 100% again!

You have always exceeded everyones expectations, it seemed you would always prove everyone wrong, so when I had to make the devastating choice to bring you home for comfort it was the hardest decision I’ve ever had to make. We’d fought together for so long, the pregnancy, those long weeks of scbu and nicu have left me with trauma I’ll never recover from. Not just mine but also the other mums I have become close to, Tracy and Kimberley and their two little boys, Harris (your future hubby!) and Archie. We lived each others extreme highs and lows, bonded in a way only those who have experienced it can understand. I hope that we are always part of each others lives and you will live through them too.

But I got you home and in those two weeks we lived a lifetime I’d dreamed of having with you. You only slept in your crib a couple of nights and then after that you snuggled in my bed, tucked up cosy with Pandora lying adoringly at your feet. A place she still sleeps every night searching for you. We went out with your pram, you wrapped up toasty and warm with your oxygen underneath in the basket and your mini sats monitor beeping at me reassuringly as we walked down the road. Cuddled on the sofa with Pandora, time with your grandma and grandad and your big sister. You got to meet your nephew Oliver.. he seemed so big next to you and honestly he was more interested in your oxygen tube! You adored your bath time, the only time I felt comfortable taking off your monitor for any length of time as you were so happy and relaxed in the bubbles and getting your after bath massage with baby lotion. Watching me with your big eyes putting up the tree sat in the same bouncer your sister Coreigh sat in 25 years ago and meeting Father Christmas. Wearing your Christmas dress and listening to your lullabies in our own home and snuggled safe in my arms. Sleeping sweetly by the fire on your playmat or on your beanbag and smiling when you tasted a tiny bit of milk from a syringe. I’m so glad I got to see you smiling… your tiny size made me forget sometimes that you were almost 3 months old.

I miss you Amber, so much. I can’t breathe and the pain is unimaginable, I don’t know how to live without you here. I miss the weight of you in my arms, your sweet smell, your soft dark hair against my cheek. I miss the complicated schedule of your feeds and medications, the whoosh of air in your nasal prongs and yes even the damn beep of that monitor.

Possibly the smallest Reiki Master in the world, you are the bravest and most precious little girl. You have changed minds, won hearts and surprised everyone who met you.

A tiny warrior queen, my little fox, so very, very loved.

All the way to the moon and back, forever dancing in the stars and forever in my heart, where there is a hole which can never be filled.

My Amber.

Friday 17th June 2022

Such a hard, emotional and at moments devastating day yesterday.

I went back to SCBU at Raigmore for the first time since losing Amber for a meeting with her paediatric consultant Philine and Joyce her neonatal consultant in Glasgow.

It was an opportunity for me to discuss Amber, her care, address any questions or concerns I had and feedback, as well as see many of the doctors and nurses who looked after us and whom I miss so much as well.

I met with my psychologist first to try prepare myself and give me the strength to go through with it.

In Scotland there is always a review of every death in children under 18, I’ve been offered the opportunity to contribute to this which I have accepted, though I’m not looking forward to it I feel it’s important.

I also brought up my concerns about how Amber’s diagnosis was given to me at fetal medicine in Glasgow. It’s been agreed to set up a meeting with them to feedback and advise them the effect it has had on me, Ambers consultants have agreed to be there with me for support at that.

My hope is that it will help parents in the future who have this devastating and complicated diagnosis.

I want them to know that ‘Not compatible with life’ is NOT an acceptable way to break the news.

Trisomy 18 is life limiting yes, but parents need to understand their options and be given hope.

I was also able to ask and try to understand ’episodes’ that Amber was having in her last week. They believe her symptoms were likely a combination of her heart failure, her getting tired and potentially seizures. This was really heartbreaking to discuss but it’s been playing on my mind and though I’ve never truly doubted my decision to bring her home, occasionally I do have ‘What ifs..?’ What if I had risked the surgery on her heart?

Though not comforting her doctors both agree she likely would have not made it through the surgery.

I have to try and find comfort that I had her at home and have memories of her here with myself, Coreigh and our family.

I then went up to SCBU and saw 4 of our favourite nurses, Bethan one of Ambers main nurses but also Ginny, Mairi and Alison. It was lovely to see them all but tears were shed.

Hardest of all, as there were no babies intensive care… I wasn’t sure if I could go in that room again but felt the need to see where Amber spent her first 5 weeks.

They left me alone and I sat in the recliner I’ve sat in so often, by the incubator which had held my baby girl and cried and cried. From that position I could almost believe she was still in there and listening to the beeps of monitors from the next room took me back in an instant… yes definitely a ptsd trigger for me and a sound I still wake to often and can hear in my head.

I do have an open invite to pop in to Scbu anytime to see everyone and I spoke to them about Ambers birthday and the gift baskets so that’s all in motion and agreed.

I also gave them the £250 cheque raised at Ambers service so I’ll let everyone know what they spend it on in due course. I hope it buys something much needed for the ward.

I feel drained and exhausted and extremely tearful but I’m so proud of my Amber and how much she was loved by everyone.

The impact she has had and continues to have on people is beautiful.

I miss you baby girl, love you to the moon and back

What is Trisomy 18/Edwards Syndrome?

Trisomy 18 / Edwards Syndrome

Trisomy 18 / Edwards Syndrome is a rare, genetic disorder caused by the presence of 3 copies of all or part of chromosome 18.

Every cell in your body contains 23 pairs of chromosomes, 46 in total, half from your mother and half from your father. A Trisomy 18 baby has 47 chromosomes, instead of the usual 46, this affects the babies development in utero. It is a random condition and very rarely inherited from either of the parents (higher in partial trisomy). It is usually an error in cell division and there is no way to predict, treat or avoid it.

Trisomy 18 is the second most common trisomy, the first being Downs Syndrome (Trisomy 21) and the third being Patau Syndrome (Trisomy 13). About 1 in 1500 pregnancies is diagnosed with Edwards Syndrome and about 1 in 5000 make it to birth, with girls having a higher chance of survival according to some. Most pregnancies end in miscarriage in the first or second trimester, and babies who make it to birth have a high chance of being stillborn or dying shortly after, though this can often be increased due to a lack of medical intervention. (In pregnancies diagnosed at 12 weeks this is around 70%) The longer the pregnancy the continues, the higher the chance of your baby being born alive.

It is often referred to as ‘Not compatible with life.’ This is an outdated medical opinion, the correct term for Trisomy 18 is ‘Life-limiting’. Devastatingly, most babies will die during their first year of life, with around 5-10% making it past their first birthday. (I was also told by a Trisomy specialist that if Amber made it past her first month she would have a 40% chance of making it to her first birthday.) The most recent research shows survival rates at 13.5% at 1 year old and 12.3% at 5 years old. Medical interventions also increase the chances of life. It can be difficult to predict how many children would survive if all pregnancies continued, due to the severity of Trisomy 18, many families choose TFMR (termination for medical reasons). It is a heartbreaking, life-changing, traumatic experience and it is certainly one of the hardest decisions anyone has to make. There should never be any judgement on the choices that are made during this time, it is unimaginably difficult and almost impossible. It took me 5 weeks of intensive research to decide conclusively that I would let Amber guide me and that I would fight for her chance at life.

There are 3 types of Trisomy

Full Trisomy is the most common, this affects every cell in the body and the effects from this can often be more severe.

Mosaic Trisomy, where only some of the cells in the body contain the extra chromosome. The severity of mosaicism is dependent on the type and number of these cells. This occurs in about 5% of cases.

Partial Trisomy (translocation trisomy) is the most rare of all. The affected cells contain a section of the extra chromosome instead of the full copy. Again, severity is dependent upon which part of the chromosome is translocated.

Both mosaic and partial trisomy can lead to much less severe affects but this is not guaranteed. Nor is it absolute that a baby with full trisomy will not survive or be more affected. There is a large variety of conditions associated with Trisomy 18 and all our children are unique and should be treated accordingly.

You can be screened during pregnancy for Downs, Edwards and Patau syndromes, through ultrasound scans/blood tests, these are not conclusive and may only suggest an issue. If they do you will be offered diagnostic testing, CVS (chorionic villus sampling, this takes a sample of cells from the placenta and is not routinely offered unless potential problems detected during initial antenatal screening. CVS is done around 11-14 weeks and are around 99% conclusive) and amniocentesis (a sample of amniotic fluid is tested. This is usually done around 15-20 weeks but can also be performed later in pregnancy. It is 98-99% conclusive.) Initial results are within 3 working days but secondary results can take up to 3 weeks.

Trisomy 18 is a complex diagnosis and the symptoms are wide ranging, from physical characteristics to severe and life threatening medical complications. Babies may have a combination of some/all of the following. (I will label next to those relevant to Amber and place a * next to those that were detected whilst I was pregnant with her)

Indicators may be

Small strawberry shaped skull with prominent occiput

Small mouth/jaw

Wide set eyes

Clenched fists/overlapping fingers (this is very commonly spotted in scans) Amber*

Rockerbottom feet

Short breastbone

Cleft lip/palate

Webbing between 2nd/3rd toes Amber

Lowset ears

Choroid plexus cysts (not problematic themselves but commonly a marker during scans) Amber*

(During pregnancy) Polyhydramnios (excess amniotic fluid) Amber*

(During pregnancy) Intrauterine growth restriction Amber*

(During pregnancy) Single umbilical artery (cord should have 2 arteries and 1 vein) Amber*

Low birth weight Amber (4Ibs 11)

Medical complications may be:

Congenital Heart Defects (VSD/ASD/PDA) About 90% of T18 babies will have a CHD Amber* (I only knew about the VSD whilst pregnant)

Abnormalities with other organs including kidneys/liver

Gastrointestinal conditions (Oesophageal Atresia/tracheoesophageal fistula/omphalocele)

Feeding difficulties Amber (it was discovered she had a bowel malrotation at 6 weeks old)

Respiratory conditions (apnoea – sometimes central, often obstructive) Amber, mild obstructive apnoea

Epilepsy

Scoliosis

All children will be affected by growth delays, learning difficulties and developmental delays.

I personally refused amniocentesis when offered it initially after my dating scan at 12 weeks, everything looked good on my first scan and having already had two miscarriages I wasn’t prepared to risk another. Also, I had never heard of Edwards (or Patau) syndrome, I didn’t know anything about them and certainly wasn’t aware of their severity. I think like most mothers (parents) Downs syndrome was the one everyone knows about, for me Downs was never an issue. I used to teach children with Downs riding and stable management and never saw it as something to be particularly concerned about.

It was at my anomaly scan where the sonographer thought Amber may perhaps have a small VSD (ventricular septal defect) but wasn’t absolutely certain. From some angles her heart looked fine, so I was sent to Glasgow for her to be checked by a cardiologist at fetal medicine.

It was at this next scan, when I was exactly 20 weeks pregnant that other indicators were picked up. She had a large VSD, a choroid plexus cyst, clenched fists, a single umbilical artery and I had polyhydramnios. When told their suspicions of either Edwards or Patau I was told ‘Not compatible with life’ and my heart and world shattered. I had an amniocentesis that day to confirm diagnosis. By the time I received initial results 3 days later I was certain that she had Trisomy 18/Edwards syndrome due to the presence of the cyst and clenched fists, both very common T18 symptoms. I got the full results 3 weeks later where I was told she had Full Trisomy 18, though I insisted on a retest once she was born as they only checked 30 cells.

I want to raise awareness of Edwards syndrome for many reasons, in memory of my beautiful, brave daughter, to help other families and also to try and change minds about this diagnosis.

It is not acceptable that families are still being told that it is incompatible with life. Once I started researching Trisomy 18 I found many, incredible children who HAVE survived. Who live or have lived happy lives. Children whose families have fought for them and children who have proven medical opinion wrong.

Families should instead always be told that Trisomy 18 is ‘life limiting’. I was incredibly fortunate in both mine and Ambers medical teams. They were all understanding, open and fought for my little girl with everything in their power. They treated her as an individual, not on the basis of her diagnosis. I was so very lucky and am so very grateful. I have met some amazing people on Ambers journey.

Others are not so lucky however, I have read awful stories of families having to fight during pregnancy for interventions. Of families being told there is no hope. Of families having to fight to get treatments even after their baby is born and beyond as they grow and survive.

This shouldn’t be the case. Though a complex and serious diagnosis our children deserve a chance and their families deserve to be listened to and shouldn’t have to battle for every treatment. I would wish that everyone could have the experience that Amber and I had with our doctors, nurses and other specialists because they were, honestly fantastic.

Though shattered by her loss, I have no regrets. Amber brought with her such joy, hope and love. We had 12 wonderful (though often exhausting, complicated and scary) weeks together. I love her beyond measure and she knows she is loved. I would do it all again without question. She is my daughter and her life matters.

The Trisomy community I have become part of is one full of love and compassion.

Our children matter.

Amber is reaching the world..

11th February 2022

A big part of my writing this blog is to try and reach other families whose lives have been touched by Trisomy 18, wherever they may be in the world. To tell Ambers story and how incredible she is, defying her diagnosis and the statistics, proving that T18 is not ‘incompatible with life’ but is instead ‘life limiting’. Life limiting is how Trisomy charities and experts wish the condition to be referred to, it is how I hope that all doctors will refer to both Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) one day in the close future.

I’m sure some people will read this and think that because she is no longer on this earth that the diagnosis of ‘incompatible with life’ is true but I disagree.

She LIVED. Yes much of her life was in hospital, I had difficult, often impossible choices to make with her medical interventions and treatments. It is, without a shadow of a doubt the hardest, most traumatic experience I will ever live through. But she lived. She was here, she was mine and I was hers and she brought such joy, hope and love with her which will remain with me forever and with many others too.

Her whole life with me she knew she was loved, IS loved. I believe spirit lives on and that she is still with me. One day I will hold her in my arms again and every day without her is a step closer to us being reunited again. That doesn’t make it any easier being without her, I survive hour by hour, on little sleep and many tears but one day I will look into her eyes again and we will be together for eternity and maybe I will find some peace again.

Where I go from here I’m not certain, I have a few ideas brewing at the back of my mind behind the fog. Once I’ve dealt with the PTSD and am able to sit with my grief, my hope is these ideas should become clearer. Amber has changed my life and my world. I will never heal from losing her. I am not the same person I was before but she will move with me throughout life always and influence what happens next. For now, I write here.

I’d not really thought about the technicalities when I decided, still at the time sat in SCBU, to publish a blog on our journey. I have a love/hate relationship with computers and honestly I’m not brilliant with the ‘tech stuff’ (thank goodness for Youtube!) However, exploring WordPress and gradually learning how to put together these pages for Amber, I realised I can see how far her name is spreading.

I can see daily views, which pages are being read and how many people are reading Ambers story. Most fascinating (in my opinion anyway) is see where these views are coming from in the world as each country is listed by name.

This morning over coffee I’ve logged on and been randomly flicking through my WordPress home hub, for the first time I’ve looked at the country stats for ‘all time.’

My little fox has reached 26 countries!

Highest of all of course is the UK, not surprising since I gave SOFT UK (the UK support group for T18/T13) permission to share it on their website and they have been a huge support for Amber and I throughout and to this day. Also since I am in the UK I am in regular contact with other groups and families, as well as my own friends and family who I know read Ambers page.

However, reading through the list of countries her beautiful face and bravery is being read all across Europe, Canada, the United States, New Zealand, Australia, across Africa including Egypt, China, Singapore and she’s even reached the Philippines and the United Arab Emirates.

I know I’m not the only mother to write a blog about my precious, complicated baby girl (or boy). I believe we likely all do it for similar reasons. To keep them alive and with us always, because we need to speak their names and talk about them constantly. To try and make sense of the pain and difficulties that come with being the parent of a medically complex child and all that it entails. To talk about the absolute joy and happiness despite everything else, to tell everyone how amazing our children are and how well they live or lived. To help other families make choices at diagnosis, at birth, in hospital, at home and of course, tragically after a loss. To offer support and advice and comfort or sometimes to simply listen to their pain and know you/they understand each other.

Also though is to share them with the world, to make others aware that our children exist, they live, they smile, they find joy and love and happiness in their lives, no matter how short or long that life may be. To let the world and the medical community know that despite their diagnosis they deserve to live.

Our Trisomy children are each unique, their medical conditions can be few or many. Not one of these children are exactly the same and sometimes health conditions are not immediately apparent, for example Ambers malrotated bowel wasn’t discovered until she was 6 weeks old. Whatever choices families have made, or have to make, whether for interventions or comfort care, each one is deeply individual and difficult and we need to trust in our child’s medical team to help us and not to judge or discriminate.

Amber and I were incredibly lucky, both my and her doctors and nurses were amazing and open, when questions arose about where to go with her treatment, I would usually simply say, ‘What would you do for a child without Edwards syndrome? Lets do that.’ It always opened the conversation and worked for me. It helped that I did intensive research both before and after her birth about her individual health conditions.

So yes, in 26 countries my Amber has been seen, her journey told. I hope this will be part of her legacy, part of the legacy from other families whose stories are also read about, that our children will pave the way to hope and life for others and perhaps help create change, both in treatment, attitude and understanding of such a diagnosis.

Then of course there’s the simplest reason to write about our little ones, to tell the world we love them.

Well Amber, I love you, always, endlessly and forever. All the way to the moon and back.

And now the world knows it.

xxx

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.

From the beginning, 2nd Trimester…

So I finally had a picture of my little one and I felt like I could relax a little and start to actually plan and dream of her future, of our future. I placed my scan photo on my dresser where I could see it every day and to remind myself that she was safe, she was ok (like I said, I just always knew I was having a little girl, there was never really any doubt in my mind and I’d already got a list of names with Amber Lily right at the top)

I’ve always done a lot of journaling, both elaborate memory keeping journals which I create myself by hand and for a few years now I’ve also kept a bullet journal so I began to use it to plan everything. My work, finances, lists and lists of items needed both both for her, for my pregnancy and labour and pages to mark milestones of my pregnancy so I wouldn’t later forget important dates such as my first scan or her first kick. I’d been such a young mum with my eldest daughter and there was so much I hadn’t been able to do or buy for her, (like a beautiful pram for example) and I’d saved up enough to be able to buy pretty much everything I wanted for Amber. (I’d found this fairly easy during lockdown as there was nowhere to go to spend money, though I appreciate that I was incredibly lucky to still have a steady income throughout unlike many.)

I made pages for all my maternity appointments, I was already aware that I would be having more than normal due to the pregnancy already been classified as higher risk and that I would be seeing my obstetrician. Little did I know at this time how I would have to expand my appointment page significantly in just a few weeks to accommodate a bewildering number of scans, checkups and long meetings with doctors.

I’d finally decided on my ideal pram and ordered it almost immediately after the 12 week scan. Despite careful budgeting I wouldn’t have afforded it new but the advantage of baby equipment is obviously people sell items which are immaculate. So after some searching I risked it and bought it from a small company on eBay and it was pristine, honestly you could barely tell it had been used at all. Before my next scan I’d already bought my maternity clothes (I needed them! My stomach was already growing early though it was!) her highchair (very early yes but in my defence it was on offer and I also have a grandson who would use it in the meantime), her bath, beautiful blankets and an array of muslin swaddles. I resisted buying clothes until I had confirmation she was a girl even though I knew in my heart she was.

My pregnancy with Amber was never fully relaxed. I still had fears in the back of my mind about miscarriage even after my 12 week scan. Covid was a frightening concern, there were too many stories of other mums being badly affected by it, evidence of an increased risk to pregnant women, a higher chance of ending up in intensive care or on a ventilator whilst pregnant, not enough was known about dangers to unborn babies. The vaccine was still new and not enough known about it’s safety during pregnancy so it wasn’t an option and anyway I was wary of putting anything into my body that would cause any harm to my little one. There were still restrictions about travel and mixing with others. I spent much of my pregnancy alone apart from my ‘bubble’ of my daughter, her fiancee and her little boy. Everyone else I met outside only, socially distanced and I prioritised the safety of myself and my baby. It was only temporary was what I told myself.

I was more exhausted than I expected to be during the second trimester, I’d had terrible insomnia since very early in the pregnancy and hoped it would ease but it hadn’t, concerns about my back as I suffer with chronic back pain (normally I have a procedure done called a spinal denervation but I’d missed it for two years due to one of my previous pregnancies and then because of covid restrictions.) I also had pelvic girdle pain which was become an issue.

I have two jobs, one running a post office, the second as a glassblower,. It felt reasonably safe in the post office, it’s tiny, rural, has minimal customers and I work in a fortress counter so was fully shielded from any potential covid risk. I was on furlough from my second job but knew the time I should have been returning was getting closer and this was a huge concern as it’s in a very busy tourist location, not a risk I was happy or comfortable with and my midwife and sister (doctor) were in agreement but I had an upcoming appointment with my obstetrician so this was something I also needed to discuss with her.

On the 20th April, exactly 16 weeks pregnant I listened to Ambers heartbeat for the first time. I had to request it as they usually wait a little longer but it was beautiful and strong and she was a wriggler! Mairi had to chase her round to find her, she must have been doing somersaults in there! Everything seemed to be progressing perfectly and I recorded it so I could listen to her reassuringly whenever I wanted.

Three days later I had an online video appointment with my obstetrician Kate. We talked through rough birth plans, I was to be scanned every three weeks from 27 weeks (no complaints there, the more times I could see my little one the better!) and I would be induced by 39 weeks if labour hadn’t already started by then. The likelihood was I may need my labour to be sped up (they seem to often be slow in my family) and the possibility of an epidural was discussed depending on how my back held out, it wasn’t at all what I wanted but I was open to whatever was needed so long as my little one was safe. She agreed to refer me to physio for my pelvis and spine and much to my relief also agreed that regards my second job working around tourists wouldn’t be safe with an already risky pregnancy in a pandemic. On the basis of it being medical advice I would be able to remain furloughed until my maternity leave started, this was a huge relief and lifted one of my worries away.

As I said previously, I have no intention of writing extensively about Ambers father, our relationship had not been going well for some time. Covid restrictions increased the strain on it and so I had focused on preparing for the baby, in the hope we would resolve matters in time and tried to ignore the mounting tension that came along with it. It wasn’t to be and I felt like I had no choice but to end it around this time, the stress had got too much, we no longer felt ‘healthy’ as a couple and it wasn’t good for my wellbeing nor that of the baby.

The next 3 weeks was really just waiting for my next scan booked for the 14th May, I was sore and getting the usual cramps as the baby grew, my sleep didn’t improve at all so I napped a lot during afternoons. I had physio and was given exercises to improve my pelvic pain. There was another midwife appointment where I got a second beautiful recording of her heartbeat and I managed to spend a day with Jess. We met up in Glencoe on Beltane (1st May) and had lunch outside and a long dog walk up around the forests and hills. It was peaceful and wonderful to see her for the day, it was the first time we’d met up in almost a year due to all the restrictions and with all the worry and stress of the previous few months it was bliss.

I was already calling my baby girl ‘Amber Lily’ when I talked to her by this point. Even though I hadn’t yet had my 20 week scan to confirm she was a ‘she’, it was no doubt my little fox already working her magic and letting me know! I was also starting to look into hypnobirthing. Whichever way the birth went it looked like a lovely way to get through labour, I was already doing reiki on myself and my bump on a nightly basis to relax and the more I read about it the more it appealed.

Our story from the beginning…

I’m sitting thinking about what to write and I still can’t face writing about Ambers funeral so I’ve decided instead to go back to the beginning, I don’t want to forget the happier times, when I was excited about what was to come and all the joy and expectation. The days when I was happy.

I have an older daughter Coreigh, she is 25 now as I write this and I’ve always loved being a mum. She is my daughter and best friend all rolled into one. I always wanted more children, it just never happened and I had come to accept it likely never would. Until it did.

I had two miscarriages before Amber, the first in September 2019 at around 8 weeks, the second in January 2020 at around 10 weeks. The second time I ended up in hospital and had a horrific experience throughout with an unsympathetic nurse which left me feeling traumatised and I don’t think even now I have fully recovered from that day.

Because of my age (42 at the time of the 2nd loss) I was referred to an obstetrician to be assessed. I was told there was no reason to not have a healthy pregnancy and that if I were to try again they would do early pregnancy scans for reassurance, would put me immediately on progesterone at a positive test to help the baby ‘stick’ and I’d be under close observation thoughout, including scans every 3 weeks from 27 weeks. Because of my age a pregnancy would be classed as high risk but they were optimistic.

So we tried again, I took pregnancy vitamins, stopped drinking except for if I was on a period when I’d allow myself a couple, I knew my cycle back to front, used ovulation test strips, learned the signs that it was the ‘right time’ and on January 25th 2021, before my period was even due I did a pregnancy test and there she was, my baby girl! I checked again the day after to confirm. I started progesterone straight away, it gave me a feeling of being able to do something proactive, keep Amber (she didn’t have a name yet of course but I ‘knew’ she was a girl) safe. I spent the next few weeks in fear, every pain, every twinge, every symptom that either appeared or disappeared I was terrified. I was bloated, short of breath, exhausted (so so exhausted!) I went for a scan in the EPU (early pregnancy unit) at just 7 weeks and 2 days and she looked like a shrimp but there was a beautiful strong heartbeat on screen and she was measuring to the exact due date I’d already calculated. I remember crying I was so relieved and that was a happy happy day.

That night I had a bleed, very light but it filled me with panic and the hospital wouldn’t rescan until the following week as it was too soon after my initial scan on the Thursday. I spent the weekend in tears waiting to see if I would lose another baby but the bleeding stopped and the following Wednesday I had another scan and there she was, looking more like a kidney bean now with her tiny heart pulsing madly. She’d grown, she was there and everything was possible again, I began to dream…

I had my first midwife appointment, I researched for hours looking for my dream pram, it had to fold small enough to fit in my car but I needed an all terrain for dog walks, a big shopping basket, a carrycot, not too heavy as I have chronic back pain, I wanted the pram to be perfect. I spend a lot of time outside (usually) and so it had to work for my lifestyle of tramping through forests or on hill and river paths. It took my mind off worrying about those early pregnancy days and what could go wrong.

On the 25th March I went for my dating scan, this was the day I’d been waiting for. That magical day that all pregnant mums wait for, the day that your baby LOOKS like a baby, the day you see a clear heartbeat and the fears of loss start to fade away, the likelihood of a miscarriage drops. The ‘safe’ scan, the one where you can relax, start to shop, start to really plan the future, the nursery, your new life.

It was exciting going finally to a different department other than the EPU. Finally I was going to the ultrasound clinic, exiting but nerve wracking too. The sonographer went straight to her heart first and seeing it beating, strong and steady I remember I let out a huge breath I hadn’t even realised I’d been holding in and I just cried. She was beautiful and alive and my predicted due date was the 5th October, the date I’d already calculated was exact, I was 12 weeks +2 days. My baby was growing perfectly.

We immediately went and bought her first babygrow, soft and tiny and perfect for a winter birth. Now I could tell everyone I was expecting, now I could start shopping!

New Years Eve…

31st December 2021

I hate the new year, I always have. Never understood the huge cause of celebration and always found it a depressing time of year, even as a teen I preferred Christmas celebrations.

I lost my cousin Steve a few years ago, right before new year. I was the one who the police called when they found him in his flat. I remember I was at work and when they asked me if I knew him, if I was related I just knew what they were going to say. It was heartbreaking, we’d only got back in touch a couple of years before and we’d become close. He’d been so ill and I’d been planning to go surprise him in January, go stay and look after him for a few days. They think he was getting ready for bed when he had a massive heart attack. He was only 45. Instead I travelled to Yorkshire for his funeral in January, I still miss him and it made me hate new year even more.

Worse now, far far far worse. Losing Amber has swept me away with the intensity and the sheer pain of it, not just emotionally but physically too.

I’m trying to type this one eyed having just been hit with an aural migraine again. I’m getting far too many of them at the moment, they restarted up in Glasgow when Amber was in NICU, to the point I had to get a prescription for betablockers, something I’ve not needed to take in years for them. Usually I only get a few a year but recently they happen with an uncomfortable frequency, triggered no doubt by stress, exhaustion and despair.

I’m sitting waiting for my sight to return (usually 20 minutes or so) to drive and buy some wine for tonight. Staying home alone and to just talk to Amber in the stars.

Struggling with making choices at the moment and they are last minute depending on what I can cope with at that second and can change in a heartbeat alarmingly as if the breathe has been instantly sucked out of me. Choices I’ve made this week consist of choosing a silver birth certificate holder and what I’d like engraved on it for Amber. Also a silver trinket box engraved with a fox, Ambers name and date of birth for the lock of her hair I have. It arrived today and it’s beautiful.

I spent a couple of hours on two days trying to sort out practicalities. Ambers DLA application keeps being sent back to me with fresh forms, I’m finding this frustrating since my paediatrician sent a detailed form to them to avoid such a thing happening but I dealt with it anyway and hope that will satisfy them at last. Having to call UC and child benefit offices reduced me to floods of tears, as did contacting my area manager to inform her what has happened and that I’ve been put on sick for 3 months and renewing my business energy contract. It’s all done now more or less so I can go back to hibernating and endlessly and aimlessly wandering my house, in between getting baths just for something to do.

I feel utterly lost and hopeless right now, what I wouldn’t give to be curled up on my sofa again with Amber in my arms to welcome in the new year together. Instead a candle burns constantly by her side on the fireplace, if I make it to midnight which is doubtful I will drink to her and tell her how much I love and miss her, if not I’ll do the same before I go to bed, no doubt to toss and turn, another sleepless night full of dread for tomorrow, just another day without my baby girl.