There are so many moments I treasure and hold safe in my heart from the days and weeks that followed – it's hard to choose which to share with you here, like our weeping with joy as we watched the pregnancy test reveal we were indeed going to be parents and our inability to contain ourselves desperate to share the news with family and friends who knew what a long journey it had been for us to receive our baby.

 

Brother still sleeping, I phoned my Mum – more tears of joy, to say the words “I am pregnant” as a daughter I had dreamt of speaking those words to my parents so many times, now here it was – I am pregnant – I wanted to shout it too the whole world, so immutable was my gratitude and joy. Still unable to contain my excitement I woke my brother to tell him the news – today is truly a good day!

From where we were staying it was a whole days trip just to go food shopping and this was already planned so off we set my sister-in -law and I to Fort William. I couldn't stop smiling, the world seemed an entirely different place, I felt entirely different, everything appeared heightened, brighter, clearer, and more alive.I felt like I was the only pregnant woman ever to walk this earth, I was surrounded by such beauty that seemed to be reflecting all the gratitude and joy I felt inside.

I am so grateful for that day of unbridled bliss, it was a beautiful precious experience that will never be matched, I am glad I was able to let myself 'have it' wholeheartedly and didn't feel I should contain or diminish it in any way. This was a perfect day!

The very next day my best friend and her husband were arriving to spend a few days with us. We managed to keep our secret until we were all sitting enjoying the beautiful sun setting into the sea and there we shared our delight, it couldn't have been more magical.

This special and sacred place, the most north westerly point of the British mainland, my childhood playground, and now I was imagining bringing my child here, carrying on the family tradition.

In these heady days of bliss we wrote names in the sand and chose Lily for a girl and Taigh for a boy. I spoke to our baby describing the beauty surrounding us and how we would play in the rock pools one day, make sandcastles together, and fall asleep listening to the sound of the waves. It was heavenly. I had waited my whole life for this.

I stood by the sea and from deep in my soul I gave thanks to the universe for making me a Mother. 

I had been given my bliss.

And so I began my research in earnest, so much to learn and decide, kangaroo care, baby led weaning, nappy less babies and elimination communication, healthy diet, gentle exercise, hypnobirthing, communication within the womb, highchairs, cots, prams, this list goes on and I relished every moment. I had been communicating with our baby since before conception, inviting their little spirit to come to us, and making sure they knew they would be loved and nurtured. The bond that developed between us was so strong. I loved carrying this little person with me, our newest family member, who's physical presence was as yet only felt as a fluttering of butterfly wings within me.

I used to let them know I felt it, and acknowledge their presence.

At night, when going to sleep, I used to love that time to touch and rub my tummy, and talk to our baby. Talking about what we had done during the day and how it felt to have them with me. Talking about having a wonderful night sleep, resting, growing, and feeling loved. When I couldn't sleep I didn't mind at all, it was just more time I could spend snuggled with my little one all cosy and warm and safe. I was truly enchanted. 

Patrick would talk to our little one too which delighted me, even though he'd say things like “Hi, I'm your Daddy, I'm the fun one!” and talk about having 'silly time' which was a term he generally used when creating havoc with my nephews usually resulting in several breakages and a mess the likes of which my virgo nature found alarmingly unsettling. But I loved that we were even able to be having these conversations, and the visioning of how life would be when our baby arrived. 

These early months were so filled with love and anticipation, I kept a journal to record special moments and gradually began collecting items ready for our baby. 

Sharing our news with our wider circle of friends was so exhilarating, many people were now awaiting the arrival of this precious being, almost as eager as I too meet them. I heard that I now was nicknamed 'preggers Val' to distinguish me from another close friend Val, I loved it – each time I heard it I felt a rush of pure joy, I was buzzing and fizzing all over with delight.

We returned to Scotland for visit, this was my most blissful time, staying in a caravan almost on the beach, days spent enjoying the sun, sea and sand with my baby, lost in our own little world where everything was just so perfect. My little nephew, then aged six, gave me a gift to take my breath away one day while we were all playing on the sand. He came up to me, put his hand on my tummy and said "I can't wait to meet my cousin and show them how much fun we have here. They are very lucky to have you and Patrick as their Mummy and Daddy." My heart melted.

But we had to return home, appointments and health checks were approaching so home we headed.

 

I began to clear house to make room for our baby, which was no small job I have to say, it might have been easier to build an extension! But my mission was love fuelled which gave me energy beyond measure to create a beautiful space for our baby. When I walked down the lane from our house I was smiling – when we first saw this house it was the lane that I imagined taking a pushchair down someday, and the room that was just perfect for the nursery – it was happening, it was really happening!

We had just found out we were having a little girl, I spoke to her of how much I loved her, how longed for she was, how I was so excited to meet her, how we would come down the lane to see the cows and sheep, how beautiful the nature around us was. Oh how I wish that bubble of innocence could have stayed forever.

My parents were just as ecstatically happy as us, having two Grandsons already from my Brother, a Granddaughter was just perfection. I have forever etched into my heart the moment on our doorstep as they were leaving one day – Dad turned to me, and closely whispered with the twinkle of a tear in his eye “ I have been waiting for a little girl” in that moment I knew she was going to be so thoroughly loved and spoilt by her Grandpa, and I can't remember ever seeing such a look of love in my Father's eyes.

You see it wasn't just me who had been yearning for this child for so long, not only my heart had ached for this child.

My relationship with my child had begun when I was a little girl myself - imagining being a Mummy, playing with baby dolls and cradling them in my arms. But now I realised that my parents had been longing for this moment too, I saw it indelibly written in their eyes and revealed in their every act. I was so happy to be giving them this joy and to see their love reflected. 

My wildest imaginings never ever once told me the story that was about to unfold.

The bleeding got worse instead of better and so many times I would cry out for Patrick to come and check the blood clots I was loosing, bigger than the size of my hand, I was afraid to look incase this time it was our baby that had just left my body, I couldn't make that discovery alone.

So many trips to the doctors and hospital followed, desperate to see our baby still safe, which she was, but the reassurance was always short-lived as more bleeding came.

During these weeks I got my first lessons in practicing calm acceptance of what was happening to us, hoping beyond hope that everything would be ok, yet trying to accept the possibility of the worst. Walking this balanced middle path wasn't easy, but I knew I had to stay as calm as I could for Lily, she needed her Mummy to keep cortisol and adrenalin levels low.

Clint was returning to London the following day so we exchanged telephone numbers and he offered to send healing everyday at 7am when he did his daily morning practice, he also gave me a picture of his spiritual teacher, she and he became my guiding lights. 

A few days later we received the call...

“Are you by yourself ?” She asked

My heart began to shatter...

“No... let me go get my partner.” I managed to say

Then with both of us listening, she uttered the words Trisomy 18, I could hardly breathe...

“Your baby has Edwards Syndrome” which is a condition considered “not compatible with life” everything stopped, time suspended, shock and disbelief...

Then devastation and despair, our whole world fell apart...

I can't remember much more of the conversation that morning, all I remember is crying inconsolably and the sickening shock of what we had just been told, I do remember she invited us to come over to Newcastle again if we wanted to see the consultant there to discuss things further – we arranged to go on Monday. 

We also drove straight over to our local hospital that afternoon, still in shock and disbelief, in the hope of being given some reassurance or clearer understanding of what we had just been told. It didn't help, I was offered a sedative and a cup of tea, I felt bewildered and scared. I realise now looking back that the journey that afternoon was more about just doing something, anything, taking some action to try and regain some sense of control when everything felt completely out of control.

We returned home tired, numb, still unable to comprehend our situation, and terrified of the uncertainty that lay ahead. Then the unbearable thought of having to break the news to our family and friends. This was a living nightmare, my worst fears becoming reality, I was suffocating, I couldn't breathe, I just couldn't process what was happening to us – my baby was going to die – how could this be happening? Everything felt so unreal. I went to bed that night cradling my tummy and cried myself to sleep.

We decided to keep Lily's diagnosis to ourselves for a couple of days, trying to comprehend and grappling with the shock and our own reactions first, before having to cope with other peoples reactions. Patrick set about researching on the internet in preparation for our visit to Newcastle. 

Our experiences at the hospital in Newcastle were always hugely informative, the staff were so compassionate and understanding, their warmth and kindness reassuring when all about us was falling apart. We were given a comfortable, warm and light little room of our own to wait in overlooking the front of the hospital grounds, a view we were to become very familiar with over the next few months.

We saw the same consultant who spent as long as we needed with him to answer all our questions and explain in depth what Lily's diagnosis meant. He said Trisomy 18 was a chromosomal abnormality and that Lily had an extra chromosome developing in every cell in her body. It would result in her not developing properly and often babies died in the womb, he explained that Lily's heart wasn't functioning normally and that at some point it would become unable to support her growth. He said given Lily's size and prognosis that she probably wouldn't live past 28 weeks. I felt battered and bruised by all the medical terminology used but was at the same time grateful to have someone helping us to understand.

As I tried to take in all the information he was giving us, waves of tears would consume me, Patrick would take over and keep asking the questions we were there to get answers to. I was drifting in and out of grief and despair, often failing to keep enough composure to be present with all we were being told.

We were grateful our consultant offered to see us at any time if we had further questions and gave us his telephone number. I felt very safe there, at that time it was the only place we had access to where it felt like people really understood how to care for a family with such a heartbreaking diagnosis, their empathy was profoundly reassuring, it became my safe place when everywhere else felt alien and cold.

I set foot outside the cosseted bubble of the hospital feeling raw, like all my nerve endings were exposed to the inevitable normality of life going on around us. How could life go on as normal? How could we be part of this world that kept going as if nothing was wrong. Every thing felt wrong to us, nothing was normal.

These visits to hospital in Newcastle took all day, usually leaving around 8am and returning twelve hours later, the car journeys became a time when Patrick and I would talk about where we were at and what we needed to do. Tonights journey was filled with the pain of knowing we would have to deliver this devastating news to our family and friends. I prayed the rest of the way home for God to give me strength for the days ahead. 

How do you tell the people who love and care about you the most, the ones who are excitedly awaiting the birth of this beautiful new life? The pain of holding this information, knowing that by imparting it we would be bringing their world crashing down too, was excruciating. With all my heart I wanted to shelter them from the stark reality we'd been given, but at the same time needing them to know the truth and not to kindle false hope.

I think I can say we did this well – we told them gently all that we had been told, but then emphasized that we were going to use all the power we had to focus on a positive outcome, be it hoping for a miracle, or that the medical profession had 'got it wrong', the chance of misdiagnosis, we just knew we didn't want to spend the rest of our time with Lily to be filled with sadness and grief. We wanted to hope beyond hope for a miracle, that our baby would be born healthy and that one day this would all just seem like a test of faith we'd been given.

My parents, though as devastated as us, heard our word song and supported our decision wholeheartedly. Lets not create space for her death, but for her life, was our intention. Our best efforts however were crumbling in the face of our worst fears. 

I am so grateful to our family and friends who helped us to keep people informed, it was exhausting telling the story over and over again, we soon developed a close group who we could pass on updates to and who would then make sure everyone who needed to know got it. The relief of just having to make two or three phone calls after our check-ups was immense, it meant we could use what depleted energy we had left to concentrate on processing the latest events and not completely drain ourselves emotionally by reliving it again and again. It takes a huge amount of energy to hold the space for what we were experiencing whilst navigating the daily storms of emotions and trying to process everything. We were spending a lot of time researching on the internet, and just being together – trying our best to stay positive but being overwhelmed by anticipatory grief and our profound sense of loss.

These were so far the worst days of my life, innocence lost, joy shattered, heart broken.

During those early days of shock I welcomed the numbness that settled in like a heavy fog, it protected me for a while from reality. I remember feeling disembodied, detached, and unable to connect with my feelings. Thank goodness for the loving caring friends around us then who would listen, ask, and hold the space for us to try to comprehend what was happening to us. 

Gradually, I became able to take some action, I began to look at research on Trisomy 18 and found many stories where diagnosis proved to be wrong and babies were born perfectly healthy.

Denial began to set in – the more stories I read the more convinced I became that Lily could be one of those babies. 

I also discovered cases of babies born alive with Trisomy 18 and living happily for many years. I eagerly gathered this evidence as proof that our little one could survive, could be healthy, that my hearts longing could be fulfilled. 

Patrick and Tom would do their best to make me smile and looked after me through my darkest moments. 

I contacted the Trisomy 18 Foundation and they put me in contact with a lovely woman who's baby was born with Edwards Syndrome, she would talk to me whenever I needed some reassurance or support with my questions – there is nothing as powerfully reassuring as talking to someone who has walked the same path before you. She shared her story with me, she understood my fears, her kindness and honesty was a soothing balm allowing me to gently let in the reality of what may be. 

I spoke many times with Clint, often when I was feeling terrified of loosing Lily and overwhelmed with grief. He would gently help to bring me back to a place of peace. Patiently he would remind me again and again of the spiritual perspective and guide me to more clearly see how I could embrace our situation and move towards a state of grace rather than despair.

At night as I went to bed he would call and talk me through the most beautiful healing meditations, which would send me into the deepest peaceful sleep. 

He spoke to me of soul contracts, agreements made between Patrick, Lily and I before our birth, to fulfil this task that was for each of our souls progression. How we each agreed to undertake this divine journey together knowing how challenging it would be. 

This was a concept that made sense to me, it resonated deep within my being, as if it triggered a distant memory that was lost at birth. It reminded me that there was indeed a higher purpose to what we were experiencing, and that that purpose was of sacred descent. 

Now I don't want you to think this was a perspective I managed to hold on to at all times! Much of the time I was in turmoil – my humanness overshadowing my faith. 

Filled with useless questions like why me? Why Lily? Why after all our treatment to conceive her? Why be given the gift of pregnancy for then our child to be taken from us? What had I done wrong? What had I done to deserve this? 

I tortured myself with thoughts of this being some kind of punishment for perceived past wrongdoings. Or blaming myself for waiting until I was in a stable healthy relationship to have a baby. Or that somewhere deep inside I must harbour the belief that I didn't deserve to be a Mother, and that therefor I was creating this nightmare, if only I could do the work, if I could learn whatever lessons I was supposed to learn from this, if I could let go of any subconscious limiting beliefs, then maybe just maybe Lily would be ok. 

Now I began to drift into a subtle phase of bargaining. Bargaining with God, with the Universe, with what ever Higher Power I hoped might be able to grant us our miracle. If I could do the work, if I could do it well enough, if I prayed, if I learned the lessons, if I did everything within my power to be in spiritual alignment, then we might be given some divine gift of healing and our baby be born safely into my arms. 

Clint's patience with me as I questioned everything was limitless. As I oscillated between acceptance and non acceptance, control and surrender, faith and resistance, desperate to make some sense of it all, and wanting to know all the answers. He would always manage to break through my illusion and realign me with a state of grace and peace.

Whenever I wobbled I would call upon one of my guiding lights and they would gently ease me back into a place of peace.

I knew I wanted to honour Lily's life no matter how brief our time together would be, by doing the very best I could for her so staying calm and positive became my mission. 

We were given some timeline markers at this point, if Lily could reach 1kg and get to 28weeks they would consider delivering her by C-section.

At 24 weeks Lily was only 388gms but she had gained 138gms in the last 3 weeks.

Blood flow was decent but my placenta could fail at any time due to overexertion. 

Life was filled with trips to Newcastle for in-depth check ups, and hoping to find Lily had gained more weight, edging ever closer to the 28 week mark when we'd been told she wouldn't survive. If she could just get big enough, if she could just reach that goal, then maybe she could be born by C-section and given the care she needed to live.

Every week became a milestone, she was growing, she was getting stronger, she was making it, my hopes would raise and my ability to accept the possibility of the worst would diminish. Yet every day was also a step towards her birth or death, living with this dual possibility is indescribable. 

Hoping for her to live and grow each week but knowing that any day her heart could just stop

I do remember wanting with all my heart to have Lily home with us, even if just for a short time, but also being full of fear about what people would think. My main concern was what if one of our lovely neighbours saw us returning and thinking Lily must have arrived safely and perfectly into our arms, came over to congratulate us. I wasn't ready or capable of explaining the truth to anyone yet.

Arriving at home Patrick got Lily and I inside along with all our belongings, then went to collect something from a friend in the next village. He was only gone a short time, I set about making a beautiful space for Lily. It was in this time while I was alone with Lily that I experienced my first connection with Lily's energy since she was born. I had begun to make her special place in our dining room, when I needed the bathroom, without a thought I set off upstairs. Nearing the top it suddenly hit me - a huge wave of grief, crying uncontrollably at the truth that I would never bring my baby up in this house, all at once I was completely overwhelmed. As I made it into the bathroom and sat on the loo suddenly what I can only describe as a ball of energy hit me - landed on my lap nearly knocking me off the loo. I know it may sound strange, but I believe - well it felt like just knowing at the time - that this was Lily's energy rushing up the stairs to comfort me and jumping into my lap. I was laughing and crying now, smiling through my tears just in awe of what I had experienced. From this moment I knew Lily's energy was with us, I just wanted to embrace her for as long as she would stay.

We together set about making Lily's space, lighting candles, burning essential oils of rose and chamomile, lighting the fire, playing some beautiful music and spending this sacred time with our precious girl. We scattered rose petals, surrounded her with her teddies, books and blankets, read her bedtime stories and showed her where she would have lived.

Having her with us while we made some food and did some 'normal' things, just having her home with us for a few hours was what I needed, I know it might not be for everyone, and for some it might not be possible, but for me it helped, to have our baby where she was 'meant' to be, with us, at home, for a little while.

It helped me with acceptance, it helped make it all real when everything felt so surreal, and it help with not having regrets later, it is wishing I'd done things which I didn't do that bring the regret and pain, I haven't regretted one thing I actually did.

I had control over when we called the funeral director to come and collect Lily. I could play her lullabies and read her my favourite childhood book that I'd been saving for her. 

Watching Patrick make Lily's space 'right' was beautiful, witnessing him tenderly placing her things about her, both of us needing to express that imperative urge to Mother and Father our child.

Only when we felt some sort of calm completion did we ring the funeral director to come and collect Lily. It was still utterly desolating to let her go, but at least we were home, safe and surrounded now by some memories of her here with us. 

"Bless you darling little one, this is your home, you will always have a space here. We will always share you with the world, your light will go on - in a myriad of ways your presence will be known."

Your ever loving Mother x x x

I have always displayed an inestimable capacity for getting obsessed with details, ( my friends who read this will no doubt be nodding their heads, and smiling ) and this was the ultimate test of my ability to get something done to a timeline that had to be met.

We gathered quotes that were meaningful to us, printed them out at home, and with friends we spent an afternoon sticking them onto coloured card. These were scattered on the tables along with hearts and stars and rose petals for the gathering after Lily's funeral service.

We chose a natural willow crib basket for Lily to be carried in, and a simple little wreath of Calla Lilies. A dear friend brought a pink balloon for us to release after the service.

We designed an order of service based loosely on a template from the internet.

We chose a picture we had taken while Lily was at home with us for the front.

We found a poem we liked that reflected our thoughts and feelings.

We chose music that expressed perfectly our mood and vision. Because sadly there is not a long life to remember at a baby's service, we found it felt right for us to include lots of music to convey our story. A Hundred Thousand Angels by Bliss to be played as people arrived and settled for the service. This is a hauntingly beautiful song that I have loved forever, now it is to be my angels song. ( Not a dry eye in the place I have to say).

We asked two of our dear friends, who also happen to be Interfaith Ministers, if they would honour us and Lily by conducting parts of the service. We are eternally grateful to them both for the way they beautifully held the space for us, guided us and loved us.

Between their loving words we played an Earth Blessing Prayer and an incredibly moving American Indian Blessing. Then we also asked our dearest Clint if he would speak about his experiences of Lily during my pregnancy. 

Lily's Nanna was to read a special poem and both Patrick and I wrote something to share.

We found an unusual version of Twinkle Twinkle Little Star to be played as we left the service, though Patrick joked that he wanted Nellie The Elephant!!! Yes we had moments of laughter while we planned our little ones day, I was very glad of these as they punctured the intensely raw dam of pain I was existing within.

I wrote a letter to Lily telling her everything I wanted to say to my baby girl, this we put in her crib, along with a shell collected by my Nephews from the beach near where they lived in Scotland, and her teddy.

Friends helped so much on the day; Chris who handled the music, Helen and Jenny who took photographs, Susanna and Freya who held the service, Clint who spoke so beautifully, Jean who brought food to our home that morning, Margaret who gave us the venue and food for everyone afterwards, and everyone who came and showed their love and caring, we felt truly blessed to receive such support. 

Thank you everyone.