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