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“I also lit the candle for future us – in the knowledge that next year, Maisie may not be with us”

Hannah writes a beautiful post about her daughter Maisie, her book Yellow Day, and her connection with Baby Loss Awareness Week.

I first heard about Baby Loss Awareness Week four years ago via an Instagram account I followed. A wonderful mum had lost her son to stillbirth, and I was devastated to hear of her heartbreak. A year later, I was suddenly thrown into Baby Loss Awareness Week on a personal level.

“We thought we’d got through the worst thing in the world”

Five months earlier, our second child, Maisie had been born. Seemingly happy, healthy and simply beautiful. However, when she was two weeks old, she needed emergency heart surgery. She made it through, and we thought we’d got through the worst thing in the world. But a couple of months later, doctors gave us the devastating news that although Maisie still looked perfectly healthy on the outside, her heart was still too big and they suspected she had a metabolic condition of which there was no cure. So when I lit a candle for the Wave of Light at the end of Baby Loss Awareness Week that year, I lit it not only for all the babies that had been lost, but I also lit it for future us – in the knowledge that next year, Maisie may not be with us.

Hannah with Maisie, and her husband and son

Having a baby with a life-limiting condition is terrifying. There would be days where I would just sit and stare at her, trying to memorise each tiny part of Maisie: how her tiny hands wrapped around my finger tips, the shape of her head in my hands, the beautiful curve of her tummy. I’d try to photograph and film each moment for future me to watch so that it would feel like she was still here. And I’d rock and sing to her to George Ezra’s ‘Give me a minute to hold my girl’ with tears streaming down my face.

I also lit it for future us – in the knowledge that next year, Maisie may not be with us

But there were also days of pure joy, which we appreciated more that I think any other parent ever has. Family days with our two children were just filled with happiness – and I look back on them knowing they are likely to be the happiest of my life. I won’t ever get them back, but how lucky were we to ever have them? We will never forget them, and they’ll live on in us for the rest of our lives.

She was unlikely to live past her first birthday

After we were told Maisie was unlikely to live past her first birthday, we felt we were left with only one choice in a largely uncontrollable situation: how to deal with this information. We decided to react as positively as possible. Inspired by others, we wrote a bucket list for her – it gave us a physical focus, and made sure we spent as much time as possible making memories. We took her to festivals, blew her bubbles, had overnight stays in hotels, took boat trips, dipped her toes in the sea, and spent as much time with family and friends as we could.

We always wanted her to be with us for longer

Sadly, it wasn’t to last, and on 21st November 2018 at a routine check-up at the hospital, Maisie suddenly went into cardiac arrest, and we lost her a few hours later. She was just a week away from her six-month birthday. We always wanted her to be with us for longer – just one Christmas, just one birthday – but it wasn’t to be. Maisie had given us so much joy, when she must have been in so much pain.

Maisie smiling

The Baby Loss community

The day after we were given the news Maisie was unlikely to live long, I desperately needed to reach out to other parents in a similar situation. Not only to hear from others who understood our situation, but to find others who had survived it. When you research baby and child loss, all you generally find are poems, quotes and posts about how it is an indescribable pain – which really isn’t helpful, and just made me all the more anxious.

I learnt about self care (not just bubble baths and face masks, but avoiding certain people and places, and just giving myself a break when I needed it)

But then I found the loss community on Instagram; I found other parents who had gone through the imaginable – and they were there, existing, surviving and even thriving. The more I read and researched, the more I realised there was certain terminology, a baby loss language, posts about different types of loss, information about difficult milestones and turning points, and even people creating and selling things to remember their loved ones. What’s more, anyone I contacted was always so keen to help, they were so supportive offering advice and their own stories. It was an incredible community to be a part of – one which no-one wants to be part of, but those in it really make the most of it.

Finding the strength to carry on

With these incredible people alongside me (most of which I still have never met in real life) – I was able to find the strength to move through each day. I learnt to anticipate certain dates: Christmas, New Year, birthdays, Mother and Father’s Day, death and funeral anniversaries. I learnt about self care (not just bubble baths and face masks, but avoiding certain people and places, and just giving myself a break when I needed it). I learnt how sharing the bad days, along with the good days with others helped both myself and others to feel less alone. It sounds ridiculous, but I honestly don’t know what I would have done without Instagram – it was my saviour.

Pages from the Yellow Day book by Hannah Chapman

Our other saviour after Maisie died was focusing on positive things: such as fundraising, running and gardening. Together our family and friends have raised over £23,000 in less that two years for the Lily Foundation – a charity campaigning for Mitochondrial Disease. My partner and I have run out first marathons and half marathons. We also decided to finally get married to give ourselves something to look forward to. And I ploughed my maternal energies into growing thousands of beautiful flowers from seed.

Time to publish my book

I also knew that I needed to stop taking life for granted and just get on with doing all those things I’d always said I wanted to do. One of those things was to write and illustrate a book – something I’d wanted to do since I was a child. Bizarrely, years before we had Maisie, I had an idea for an illustrated poem about grief, despite having little experience of grief myself: it’s almost as though something was preparing me for the future. I’d worked on it for some years before Maisie died, but now she had gone, I knew it was time to finally publish it.

The book is called ‘Yellow Day’ and it is a journey through loss. I deliberately made it quite open ended, so that hopefully anyone else experiencing grief would be able to relate to it. Each page consists of images of objects and places that remind you of a person after they’ve gone: an empty bed, an empty place at the dinner table, clothes that hang unworn in wardrobes. The illustrations are seasonal with spring daffodils and autumn leaves, indicating the passing of time and the world moving forward when you don’t want to.

Hannah Chapman holding a copy of her book and a photo of Maisie
Hannah holding her book and a photo of Maisie

But it is also a book about hope: showing how it is possible to still relish life, whilst keeping your memories of that missing person alive. I really hope that readers will find some comfort in it. I wanted to make it something really beautiful that people could treasure – or give to others suffering as a gift – so the illustrations are full colour, with yellow binding, a hard cover and thick, creamy pages. It’s my way of keeping Maisie alive, not just in our memories, but in others’ too. A way to keep her light burning – because a parent’s biggest fear is not only the death of their child, but that their child may one day be forgotten.

Hannah Chapman

You can pre-order a copy of Yellow Day by Hannah Chapman here: https://amazingmaisie.com/product/yellow-day-book/

You can follow Hannah on Instagram: @our_amazing_maisie

Ragdoll Mummy, by Martha Lane

Martha Lane has written this beautiful piece for Let’s Talk About Loss to help us mark Baby Loss Awareness Week, which is 9th – 15th October every year. If you would like to find out more about Baby Loss Awareness Week, and specific support available, you can click here to be taken to the website.

Ragdoll Mummy

In a room designed for someone else, she took up crafts in the dark. Told to take up a hobby, to distract her. Sitting through long nights with her back against white painted bars. Humming wordless lullabies, she used glue. Sticking not fixing. Bits of nothing pieced together refusing to make something, anything. Refusing to be anything more than nobody.

She roared at the nightlight shaped like the moon. Shredded cotton blankets, a breaststroke of fury through pastel fibres. She wrenched the bars from the bed and snapped them to splinters. Picked up two sticks, started to knit. Trying to give form to the shapeless. She spent her hours entwining threads. Not sure what she was making. Trying to get it just right, even though she didn’t know what that was. When the thoughts grew too large, she rested her head on still-furled balls of yarn.

The room’s heartbeat was wooden – clack clack, clack clack, clack clack. The blood drawn from her fingers its food. She couldn’t pinpoint when it happened, but one day she looked up and the doorway was blocked. She was woven into the lumpy wool bodies she’d tried to create, unable to stand. Still she knitted. Searching for that shape that was just for her. That fit perfectly in her palm, against her collar bone, under her cheek.

Her knitting needles wore down to stumps and her fingers seized into branches. She couldn’t knit any more. She lay back on the cascade of discarded dolls and closed her eyes. She dreamt of milk breath and wisps of curls, flat soft feet and fingernails sharp like sparrow beaks. She dreamt of trees taking root, splitting the Earth from beneath. Of Lava bubbling, flowing red, slowly turning black. Of the sun setting and forgetting to rise, a hollow purple spot in its place in an overstretched sky.

Martha Lane

You can follow Martha on Instagram @poor_and_clean_

If you would like to submit a blog or piece of creative writing, please email blog@letstalkaboutloss.org.

Karate helped me through bereavement

In this blog, Emily reflects on her passion for Karate and how it’s helped her to regulate her emotions and find a family after her Dad passed away. You may also be interested in reading Emily’s other blog ‘A different kind of grief‘.

Life turned upside down

On Wednesday 7th March 2012, my life was turned upside down when my Dad passed away after a long battle with cancer. At the time, I was 17, and I was studying for my A Levels, hoping to go to University. Finding out that my Dad had died was difficult, and I always found that I was either completely numb and apathetic, or over-emotional and crying at absolutely everything.

Life at home was no longer as it used to be, and I no longer had my Dad to talk to. I could talk to my Dad about anything and everything – the good stuff and the bad stuff. When he died, it was like all of that went too.

Regaining a sense of normality

One of the things that helped me after my Dad died to regain a sense of normality was going to Karate and staying focussed on my training. It always felt like that during the lesson in the dojo (the training hall), nothing else mattered, except Karate and spending time with fellow students and instructors, who were so sympathetic towards the “situation” that my brother and I were in.

My Dad always adored coming to watch me do Karate, especially at the bigger assessment events, so continuing to pursue and persevere with my Karate training absolutely felt like the correct thing to do. There were also people there who I could talk to, not in the same way that I could talk to my Dad of course, but they were people who I could trust and open up to and be honest about how I was feeling.

Having something to focus on

Reflecting on that time, I don’t know what I would have done if I didn’t have Karate in my life to focus on and help give me a sense of normality. One of the many benefits of Karate – and any martial art in fact – is that it helps you to keep your emotions under control, as well as keep you physically and mentally healthy.

That’s not to say that my mental health hasn’t been affected by my Dad’s death. I have struggled with depression and anxiety ever since. However, it has helped to get advice and support from others who have been through similar experiences to mine. Especially as now, the Karate club I train in is called Kazoku Karate-Do (Kazoku actually means family in Japanese) – and I genuinely feel as though it is a big, second family with unconditional love and support.

Sometimes, I do feel sad that my Dad will never see me progress all the way through to my black belt (hopefully – one day) in my Karate journey, but I have gained a second family through my Karate journey and that means more to me than anything.

Even now, more than eight years since my Dad passed away, going to Karate still helps me to maintain that focus and I also hope that my Dad would be proud of me for persevering with my training

Emily Maybanks

Would you like to write a blog, or review a book, for Let’s Talk About Loss? Get in touch now, we’d love to hear from you.

Projecting Grief: Using creativity to help heal

In this blog, Jo describes a project that she and her writer, Faye, have been working on to better understand and capture how creative pursuits may help those of us who are grieving. 

“My brother took his own life in November 2017. Real grief was not something I had really had to face until that point, and for a long time it was completely overwhelming.”

Jo Ritchie is a photographer. When she lost her brother, she started to search for others in similar situations feeling the need to connect. She was fascinated – and uplifted – to discover how many people channel their grief through creativity.

“Sometimes the last thing I wanted to do was pick up my camera and attempt to be creative, so I was intrigued to meet people whose grief was the catalyst of a creation.”

In 2019, Jo began searching for those that had used a creative skill as a distraction, a relief, or an expression and taking their portraits.

She has met comedians, actors, crafters, writers, and cooks.

“I am honoured to have met these people and been allowed to take their portraits. It’s interesting that what started as a need to connect has now gone full circle and Projecting Grief has become my creative outlet.”

Jo felt that the portraits required context so decided to team up with a writer to bring the stories and images together. She teamed up with Faye Dawson, a Communications Consultant, whose own grief had taken her down another path.

“When a whole host of otherness decided I wouldn’t have my own child, the thing that upset me most was ‘what will I leave behind?’”

This is the opening line to Faye’s writings. She had two miscarriages in the space of nine months and says she did not understand her grief.

“I thought ‘how can you grieve for someone you never met/never knew?’ There were people suffering far worse than me; I shouldn’t have left it too late to try; it was my fault.”

She decided to not try again.

“I could have continued trying, I was offered support, but I chose not to and fundamentally I am ok with my decision. But it did leave me wanting to make sense of ‘family’, and so I started writing about my own which is blended and bonkers!”

The pieces were very well received, and she wanted to do more, believing it would be her ‘something to leave behind’.

“I decided to set up as a freelancer with the idea of giving myself more time to write and in 2017 I set up my own Communications Consultancy. I haven’t touched my writings since! But what that decision/life change has led me to do is connect with some amazing people that I probably would never have met. Jo is one of them and I’m delighted to be working with her on Projecting Grief.”

Together Jo and Faye are looking for anyone who wants to share their story around grief and creativity, specifically people who created something as a result of their loss.

“Grief has no prejudice”, Jo concludes.

“We want a wide range of voices.  Any creative process is valid – from cooking to sewing, dance to pottery, embroidery to writing; anything that has/is helping you deal with the grieving process that you’re happy to talk about.”

     

If you want to take part in the project email: projectinggrief@gmail.com

To see the story so far visit www.projectinggrief.com

You can find them on Instagram at @projecting_grief

To see more of Jo’s photography visit www.joritchiephoto.com

To read Faye’s story visit www.fayedawsonpr.com/fayesbook

Growing So Well // Sunita and Amelia

22-year-old student Sunita was bereaved in 2019. She has created a poetry book exploring her experience of grief, as she found it difficult to always find the words to express how she was feeling. 

After her boyfriend died in 2019, Sunita captured those emotions and translated them into poetry – the result is a wonderful book, Growing So Well. Illustrated by Sunita’s friend Amelia, and self-published during lockdown, we are privileged to share some of the poems here.

If you wish to buy a copy of this book, you can do so on Etsy here.

You can follow Sunita on Instagram at @sunita_e and Amelia at @ameliadhtovey.