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I carry your heart with me (I carry it in my heart) E.E Cummings

Read the heartbreaking, yet truly inspirational story of one of our dear friends.

Nicola is one of our much-loved members who brings smiles, fun, warmth and a great deal of laughs to each class she attends - we love her! It can sometimes be easy to forget that this woman has endured life's absolute worst nightmare, yet here she is being kind, funny ,caring, a great friend, mum, wife and pet-mum, plus a strong yogi. We are proud of you and thank you for sharing Malcolm's story.




 

I carry your heart with me (I carry it in my heart) E.E Cummings


We had this poem read at our wedding. A small, simple ceremony, no more than 40 people gathered in an old Irish village hall on a quiet Thursday afternoon. Two childhood sweethearts now officially bonded for life, living their own version of a fairytale. In the weeks after the wedding a positive pregnancy test seemed both welcome and obvious.



Us


We attended our 20 week scan with no concerns, we were a happy little family, Mammy, Daddy and Bump. It is hard to articulate the atmosphere in that room when the sonographer goes silent, when she leaves the room. We were ushered off to a side room, one of those hospital rooms that is trying not to be a hospital room. A consultant came and explained that the sonographer had detected an ‘anomaly’ with our baby’s heart. This hospital were unequipped to deal with this so we would be transferred to the Liverpool Women’s Hospital for care. From that point onwards my pregnancy path was different- no antenatal groups, no NCT groups, no midwife appointments, no birth plan.


Our baby had a diagnosis of pulmonary atresia, a congenital heart defect that affects 1 in 10,000 babies. Our baby would be closely monitored now although the baby was safe inside me as my heart was working fine and was carrying us both for now. Our baby would be born by c-section and would stay on the Neo-natal ward to gain weight then be transferred to Alder Hey where the baby would have open heart surgery at 5 days old, the first of many planned open heart surgeries. Our Fetal Cardiologist, Dr Roberts, was hopeful and so was I. On Christmas Day 2013 I wrote in my journal in a letter to my baby, ‘Being miserable or negative will not help you - you are going to need to be strong and positive to get through this. Don’t worry though - I will be with you every single step of the way. I struggle to stay positive sometimes but I know I have to for your sake and mine.’


From week 30 I was attending twice weekly scans at the Women’s hospital and twice weekly fetal monitoring at Whiston. We were also meeting with the team at Alder Hey and went to visit the intensive care unit there to prepare us. In reality I see now that nothing could prepare us.


At just past 35 weeks pregnant it was decided that now was the time. Our baby was born on March 13th 2014. Despite all the scans, Dr Roberts had managed to respect our wishes and never revealed the gender of our baby. Now here he was, Malcolm, 4lbs 11oz, and he was perfect.



Just Perfect


A quick cuddle and then he was sent off to the Neo-natal care ward. I was moved to recovery then the post-natal ward.  In all the preparation, not once had I been told to ready myself for the feeling of being on a post maternity ward with no baby, surrounded by new mums with their new babies. My heart felt broken already. Excruciatingly it took almost 8 hours for the epidural to wear off and my legs to move enough for me to fall into a wheelchair and be pulled round to the ward.




There he was. In his little incubator, intubated, connected to all manner of beeping machines and wires but he was there, he was real, he was mine. I sat by him, talking to him, stroking his head through his little hat. I sat there until my head started snapping against the cot and the nurse ordered me back to the ward for some

sleep.



Malcolm


The next few days were hard, physically I was suffering after the c- section but every chance we got was spent around on the ward with our boy. We prepared ourselves for the long haul but we could get through this.


Me and Malcolm


Early hours of the 16th of March 2014 I was abruptly pulled from my bed and dragged backwards at speed in a wheelchair through the corridors of the hospital. I knew something was wrong because the person pulling me wasn’t talking, they were running. We entered the normally serene, darkened Neo-natal unit but all the lights were on. There were doctors and nurses all around Malcolm’s bed and there was a flurry of activity. There were screens placed behind me. Someone was talking to me but I didn’t register anything until I was aware of my husband behind me and the nurse placing Malcolm in my arms as another nurse removed all of his tubes and wires. The doctor knelt on the floor in front of me. I cannot remember what he said but I will always remember how sad he looked. The first and only time I properly held my son in my arms, looking down on him, cuddling him, was as he took his final breaths. As he took his final breath I pressed my lips to his and I caught it, that last bit of life, that wisp of what could have been.


So we left the hospital with a full and untouched baby bag, an empty car seat and just 27 photographs of a baby who now rested in the hospital mortuary awaiting autopsy and a coroner’s inquest.


‘It’s just that….’ She hesitated. ‘It’s just that I lost my son too. It’s just that…I know. I know what it’s like. The void. It’s black like the sea.’ – The Beekeeper of Aleppo ‘The void’.


What came next was black and confused, animal and painful. I remember the weeks and months of my life after my son died in snippets and snatches rather than a cohesive or chronological whole. I remember sitting in the bathroom of the hospital room counting seconds on my husband’s watch as he gripped the sink so hard, I worried he would pull it from the wall. I remember losing time too, days that I cannot account for including Malcolm’s funeral- I know it happened but the actual memory of it lurks to the side of my mind’s eye just out of reach. I remember walking over the Greenway and being aware of an animal screaming in pain only to realise that it was me, howling and as I looked down my top became soaked with the breastmilk that he would never drink. I remember closing my eyes at night praying to any higher power that I would never wake again only to wake in the night to hear the sound of a baby crying in another room that I could never find.


The wheels turned even though our lives had stopped still. We had to register Malcolm’s birth and before the ink was dried on his birth certificate we were signing his death certificate. The absurdity that the single best and worst days of our lives could fit in an A4 envelope. I framed Malcolm’s birth certificate and hung it on the wall, that he died was devastating but that he lived was a triumph to celebrate.


Journal entry from 11.12.2014

‘I have to be honest with you, I had to calculate earlier how old you would be now. I honestly thought I would count the hours you were gone but it is the opposite. Time functions differently now. Some days fly and some don’t. It doesn’t matter either way, all that matters

is that you are not here.’


My friend, Amy, talks about the ‘choose again’ moment. One day months after Malcolm had died I realised that I had two choices. I could stay in ‘the void’, no one would judge me for it because when you lose your child you become a person that the English language doesn’t even have a word for. You become an actual freak of nature because your very existence is counter to the natural order of things. Or I could choose again, I could choose to take that last breath of my beautiful baby and I could try to find the light again. I can remember exactly where I was when I made that choice and I turned my face to the sunlight.


‘Sue’s grief is bigger than she is. It is a bully…It is everywhere, thorny and thick. It is muscular. It is whole.’ – About a Son


When I look at my wedding pictures I feel sad because although I remember that day so fondly, I look into my own eyes and see a stranger.


Matrescence is the process of becoming a mother; the physical and psychological and emotional changes you go through when you give birth. With the birth of my son I became a mother, a different woman than I was before and with his death I evolved again into a creature so far beyond my own understanding of the world. I was reborn but simultaneously dead. Using the radical acceptance framework I was able to parent my dead child. I did this by leaning into the grief I was feeling and recognising that grief was simply love, to heal my broken heart I had to love my son who was born with a broken heart. I took my grief by the hand and forged a relationship with it, allowing it into my life and letting it take form.


In this new life I found community, I found new ideas and really, old ideas, I found spiritual awakening and emotional healing, I found layers of pain and grief but also vast stores of resilience and gratitude. I found solace and comfort in family, friends, pets and a new baby who shattered everything I thought I knew all over again and challenged me emotionally in ways I hadn’t imagined. 


I also found the true value in self-care. An idea I previously thought was just for glossy women’s magazines and meant a hot bath and face mask. No, it turns out self-care means counselling, hypnotherapy, hydration, nutrition, journalling, educating yourself, moving your body, pushing into all those squirmy corners of yourself and picking it all apart. For me self-care also means a sober curious life, nature, crochet and reading, doing what Dr LePera calls ‘the work’ on all the days, every day, even the hard days, especially the hard days.


Everything I thought I knew about grief and death was wrong. Time heals nothing and I will never ‘get over it’ or ‘move on’. There is no one single sentence or quote or scripture that can sum up the pain of living a life after your child has died in your arms. It hurts every single day of my whole life from that day to this one and I expect every day that comes after. But that is ok. I accept my grief, I make space for it and I ignore any platitude that starts with ‘At least…’ I am kind to myself on days when that blackness threatens to swallow me up and I am proud of myself on days when I seek out the light. I speak his name and I celebrate the life he lived, that he was so loved and that the very absence of him in the world is felt so truly and deeply by everyone who loved him and people I hadn’t even met yet who would love him as they grew to love me.



After losing Malcolm it became easy to convince myself that in some way my body had failed as a woman, a wife and a mother. I took that idea and used it as justification to starve and punish my poor body. After the birth of my daughter Grace I had another one of those ‘choose again’ moments. I broke up with diet culture (officially, I wrote a letter at a women’s retreat that I will happily share with anyone who wants to read it.) and I discovered the power in movement, the healing to be found in lifting weights and boxing. Then in yoga, I found the silent strength that comes from stillness, back to where it all ended and where it all began - the breath.



Our little family



 

If you would like to leave a donation in memory of Malcolm we have provided the link to the charity chosen by Nicola, the wonderful ' Ava Marie Foundation'.

Ava Marie Foundation is a UK charity working tirelessly providing memory boxes & support to those affected by miscarriage, stillbirth and the death of a child.





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Rosanne Bond
Rosanne Bond
28. Feb.

The void never leaves, an I couldn’t agree more that time means nothing. Accepting grief is the only way forward, acceptance that its the depth of the love 💜💜 thank you for sharing the story of love for you angel baby xxx

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What beautiful poignant words Nic. Your sharing will help many others lost in the sea of emotions the loss of a child brings. It’s a mums club no one wants to join and you can never leave. Thank you for sharing Malcolm’s story. Xxx love Anne H

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