Keeping the light burning: A mother's personal journey through baby loss - News - The Lily Foundation
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Keeping the light burning: A mother's personal journey through baby loss

Personal stories

13 November 2019

Last November, Hannah and her partner Ben lost their baby daughter Maisie to mitochondrial disease. Hannah has written about Maisie's journey on her blog AmazingMaisie.com, and in the wake of Baby Loss Awareness Week we asked her to share her thoughts and feelings as she prepares for the first anniversary of Maisie's death. Here they are, in Hannah's own words.

A women cradling and look down on a small baby with a breathing tube

On 21st November 2018, our beautiful daughter, Maisie, passed away from mitochondrial disease.

It was shortly before her six-month birthday. She had survived open heart surgery and sepsis at just two weeks old, but then a few months later, although appearing well, a heart scan revealed that she was still seriously ill, and we were told she wouldn't live very long. We were heartbroken, and sadly, after less than three months, she passed away in our arms. As the anniversary of Maisie's death draws near, I wanted to reflect on what I’ve learnt about surviving and living as a bereaved parent. I hope it will spread some understanding to those who have not experienced baby loss themselves, and help those who have.

Becoming a parent changes you beyond recognition, and losing a child does it all over again.

When you have a child, you become a secondary being to your baby; as long as your baby is okay, you are okay. You’ll put yourself through immense pain and suffering to avoid them being uncomfortable. Carrying them for miles, rocking them to sleep for hours, always putting their comfort and desires before your own, to the extent you can’t recall your own desires, or what it meant to be you before you had a child.

Then suddenly that baby, your child, is no longer there. Life is turned on its head. Suddenly you’re free of all those constraints again. But it is a freedom you don’t want. I didn’t want any of that time, those free hands, that silence, that sleep. I wanted to be the mother of a needy baby, totally secondary to their needs, wants and desires.

This last year has been a learning curve. Finding ways to fill all that time and space. Finding ways to navigate through our feelings. Finding ways to keep Maisie alive, even though she's gone. Finding the ways we want to remember her, and have others remember her. It feels totally barmy, but we are finding ways to continue 'parenting' a child who isn’t there.

Sharing can help with even the most personal and hardest of pains.

Sharing things makes them easier, even in the hardest times. I often think I want to deal with these painful anniversaries by myself, or just with Maisie’s dad and brother, Lowen. But often that ends up harder, and it is actually easier to be around the wider family who are also going through it. We help to distract each other to a degree. We're just together, experiencing it, trying to move through it, creating little memorials and every so often sharing something we are thinking about or feeling.

It was obvious when Maisie died that friends and family didn't really know what to do. How can you? But they also showed how much they really wanted to do something, and that is enough. Because there isn't anything that anyone can do, really. No-one can bring her back. But just knowing that there are people around who care so much about you that they would do anything for you, that really helps. You feel supported, you feel like if you fell, they would be there to pick you up. People bought us frozen meals, left shopping on the doorstep, made us delicious homemade food, sent presents, hundreds of cards and messages. Each one felt like it added to our safety net.

A man and women in woolly hats sit on a bench, between them is a little boy with a woolly hat. The women has a baby attached to her front in a sling
Hannah and her partner Ben with baby Maisie and Lowen

You can find a lot of comfort in strangers.

Finding the online baby loss community was a massive help. When we were told by the doctors they didn’t expect Maisie to live very long, I desperately needed to speak to others who had been through it and survived, so I could know that one day we might be okay. I reached out to people all over the world who share their loss and experiences online, and was amazed when they replied. I think I would be in a totally different place today if it wasn’t for these very kind, generous, and open people. It motivated me to share our own story online. I do it partly to keep a little part of Maisie alive, but also in the hope that our pain might help others in the future: a survival story to bring a little hope. It helps to think she might make a positive mark on people's lives, even though she is no longer with us.

Positivity can work as a survival mechanism.

From an early stage in Maisie’s journey we learnt the power of staying positive. There are times when it would be easy to give in to the sadness of it all, to be constantly thinking of all the times with Maisie we are missing out on. But we try our best not to give in to this. This isn’t because we’re amazingly strong people, it’s just because it makes it all so much more manageable. It’s a way to survive. So instead we focus on what we do have: our wonderful families and friends, our health, our beautiful home, support from different charities and ways to express our grief, whether it is writing, reading, running, drawing, walking, talking, fundraising, buying trinkets for Maisie, lighting candles. We feel blessed that we are able to do these things, because others around the world don’t have this luxury.

Above all, we have two of the most precious gifts that get us through the hardest times. Firstly, there is our first-born Lowen, who makes me the happiest person on earth. I can literally feel the oxytocin coursing through my veins when I hold and cuddle him. He is our true salvation. And then, there is Maisie herself, and the beautiful days we got to spend with her. I hardly ever left her side, and I'm so thankful for that. It feels like she was here for so much longer than six months, and she seemed so much older than that, too. She was a real little character, full of smiles, laughter and light. It would be so easy for me to think about how old she would be now, and the things she would be doing, but that is just pointless and painful. I choose to focus on the time we did get, rather than what we missed. 

We are grateful for the precious memories we do have.

Parents lose babies all the time: the babies they dream about but aren't able to have; the babies lost early in pregnancy and all the hopes that are lost with them; the babies lost later, after parents have had a chance to hold and watch over them; the babies who are stillborn, whose parents never get to see their eyes open. So we feel lucky to have had the time with Maisie that we did. We have so many memories to cherish. Feeling her kick and wriggle inside me, seeing her emerge into the world, holding her for the first time; proudly announcing that she was a girl; feeding her for hours and feeling her warm body against our skin. We saw her first smile, heard her first giggles, held her hand while she held our fingers, bathed her, watched her kick in the bubbles, see her eyes watching leaves move in the wind... We got SO many things. I will always want more, but they were enough. Maisie fought hard to give us these things, and I am so grateful to her for that. Although her life was short, it was also perfect, it felt like the life she was meant to lead.

A toddler looks down at a little baby lying on its lap
Lowen with his little sister Maisie

Seeing your children in pain is the worst thing ever.

For me, the hardest part is seeing Lowen's pain. I can deal with mine, and my partner Ben's, and the pain of other family members. But as parents you're geared to protect your babies from pain. We weren't able to protect Maisie, and it hurts not being able to save Lowen from it either. He loved his sister, and he is so young and small. He has to grow up thinking this pain and confusion is normal, and that just isn't fair. Many of his friends have baby brothers and sisters, and I think he is confused sometimes about why his sister was 'broken' while others are fine. He can say the most heartbreaking things, but strangely they don't move me to tears. I sometimes worry that that might be a bad way to react, and that perhaps he'll think he shouldn't cry either. Maybe it's a self protective thing, but I feel the need to be strong for him. So I try to answer his questions honestly, and talk about Maisie and the memories and photos we have of her, to keep making her part of things.

And of course, our own parents – Maisie's grandparents – are hurting too. I can only imagine their pain in seeing us going through the loss of our baby, and being helpless to do anything about it. They have to endure the loss twice over: first as grandparents losing their granddaughter, and secondly as parents watching their own children suffer.

Child loss is full of contradictions.

Child loss - especially when it has been anticipated, is full of contradictions and confusion. For example, it has shown you how short life is. It shows you to grab all of your loved ones a little tighter, because you never know what is coming around the corner. It shows to do all the things you’ve ever wanted to do before it’s too late: open that bottle of champagne, attend that class, book that holiday, write that book, stop putting things off.

But then, there is always something pulling you towards that end of life too. We don’t fear death as we used to. Everything has been dulled a little, put into perspective. Horrific news can be given to you, and it no longer seems so awful. You feel like you’ve experienced a little bit of that pain and shock already. We are definitely forever changed, and the me before Maisie just seems unrecognisable.

Our responsibility as parents is to keep Maisie's light burning.

Babies bring hope and light to the world, and Maisie brought that in abundance! She truly brightened a room with her beautiful smile and presence. Now that she's gone, I feel it's our responsibility as her mum and dad to keep her light burning, and by doing so hopefully make the world a little brighter. So we focus on doing that in her name: we share her story of hope, we fundraise for the Lily Foundation to find a cure, we run long races we have never done before, we light candles in churches across the world, we grow flowers to brighten people’s homes, make lanterns for processions of light, and much more. Maisie is our inspiration, and she has become an inspiration to many others too, and we can only hope that will continue.

There will always be four of us in this house, and we ensure Lowen knows this too. When he picks flowers, he picks a flower for all four of us. We’re still getting used to this new life, but whatever happens, Maisie is and will always be a huge part of it. She has changed us all forever, and I believe, for the better.

If you've experienced the loss of a child, support is available from our partner charity Child Bereavement UK. Visit their website for further details. 
childbereavementuk.org.

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