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

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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