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.
and back 
Amber, The Trisomy 18 journey of 'my little fox' 