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Despair

The innocence of first time pregnancy, where I believed everything would progress just fine, was shattered for the first time with the onset of heavy bleeding. What was my body doing? What was happening to our baby? I felt so helpless. It was the weekend so we had to wait anxiously until Monday to go for a scan, which thankfully showed Lily was ok. All I could do was rest and hope.

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.

 

Eventually things did settle down and I once again allowed myself to believe everything would be ok.

 

At a routine scan our consultant decided Lily seemed small and wanted us to go over to Newcastle for more in depth checks. Here they did an amniocentesis, just to rule out anything more serious they said, they expected it to be fine and that Lily was simply a small baby. I clung tightly to this hope. Our car journey home was spent ringing family and friends to reassure them too.

 

At this time we were given a great gift, sent to us at our time of need, a man who was to become my spiritual guide and one of the beautiful earth angels that walked beside us along our journey with Lily and helped me to do so with gratitude, faith and love. The blessing of this sacred souls guidance and support has transformed my life.

 

It was a special evening at our local meditation and healing group, a visitor from London was coming to share his experiences with us, and although we were exhausted from our day in Newcastle I felt a strong pull to attend. When we arrived I immediately went over to our beautiful friend who used to be a midwife and as she held me in her arms I quietly let go and sobbed gently as I whispered to her that Lily was small and they were doing tests, I didn't need to say anymore – she just held me.

As my sobs subsided I became aware of the visitor nearby, a gentle looking man dressed in white, and as he introduced himself I felt so many emotions in one instant I almost felt embarrassed. Exhausted, vulnerable, frightened, confused, and yet suddenly peaceful, safe, calm, “Hi, I'm Clint” he said, little did I know then how much he would come to mean to us.

 

It was a beautiful evening of meditation and healing, Clint invited Patrick, Myself and Lily to receive more healing after the group finished. I felt such a deep connection to this man we'd only just met, I had never before felt such an instant knowing and trusting that this was a truly special moment, I felt humbled and blessed by what I was experiencing. The room was candlelit and filled with flowers, the scent in the air was divine, we received the most beautiful and powerful energetic healing, and the whole room seemed filled with the Divine – and I believe it was.

                       

 

Clint sent us home with some of the energised flowers and I ran a bath even though it was gone midnight, I sprinkled some of the flower's petals and essential oils in the warm water and relaxed for the most beautifully sacred time with my baby, closer than ever, soul to soul just loving one another. I knew something amazing had just happened.

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.