Maisie's story



So. Here is the post I hoped never to write, and definitely not so soon.

I began writing this several weeks ago, but have only just now finished it…

On 21st November, a cold, wet, dark Wednesday night, our beautiful Maisie passed away.

Our fighter, coy smiler, first daughter, water baby, lover of lights, baby sister, leg kicker, day-maker, tiny sausage, beautiful grand daughter and much loved niece, is no longer with us anymore.

Everything is incredibly raw right now, it’s such a strange time. Amongst the grief, there is a sense of relief.

We have been fearing this time for so long, it is so strange now it is here. And is very different to how we expected it. There are phases of extreme sadness, but often there is a sense of calm and rest. Rather than a constant floods of tears, I find myself laughing at our wonderful Lowen. I think I’m in a state of denial, my brain has shut down and just can’t process the enormity of it. I find I often can’t think of her for fear of the pain.

The distractions of family and friends visiting, of letting people know and replying to messages, of Lowen’s needs and of the practical things that need taking care of, helps a lot. But I am scared of what the future holds, the pain, the emptiness, how much I am going to miss her.

Sometimes I think I am dealing with it all exactly as Lowen is. He asks questions when be thinks of her, but just can’t understand or contemplate that she is no longer here and never will be. But is easily distracted again by something else. And he is just staying in the moment – not thinking about the past or the future.

It is so weird suddenly finding myself with all this time, all these free hands when I am used to holding her more or less constantly. It is strange how I am now able to sleep for hours at a time without a baby waking me. Strange that I no longer need to administer meds every 8 hours and go to several hospital appointments each week. Strange that I no longer have to worry about each and every symptom and drive late at night to hospital to check her out. But I would take all of that for one smile, one look, one cuddle in an instant.

We take great comfort in that she isn’t in pain anymore. She doesn’t have to take foul tasting medicines that make her sick, give her tummy ache and nappy rash. She doesn’t have to have another painful blood test or injection. She doesn’t need to be woken by nurses needing her temperature or blood pressure. No more echos or ECGs, no more doctors and consultants. No more whistling hearing aids and annoying fittings. No more sickness and diarrhoea, heart pains, and breathing issues. Now she really can rest in peace.

It was such a hard last few weeks. Rather than wonderful memory making, we spent much time toing and froing from hospital. Maisie was very sleepy and irritable, and often in pain. Lowen was unsettled not knowing when he’d next see his mummy and baby. Ben would be working hard at home to keep everything going single handedly. Whilst I spent every minute in a state of anxiety – worried about every symptom, every feed and nappy – not knowing whether to take her to hospital or not. And then there is the constant guilt and pressure of making the most of every single second. Trying desperately to freeze time – taking her all in, documenting each moment with multiple videos and photos. Looking back in some ways we were lucky we got to prepare ourselves for what lay ahead – but it was also hard, because each happy memory was also tinged with sadness.


It’s now 8 weeks on. Some of the slowest weeks I have ever known. Her life with us feels a million miles away. Her life was such a whirlwind – the minute you got used to one piece of bad news – the next hit us. In a way we never got to breathe whilst she was here. Never got to really get used to her here, blessing us with her beautiful being! Her whole life just seemed like one big wonderful dream – intertwined with nightmarish moments. 8 months ago there were three of us in this house, we went through so much, and all of a sudden – we are back to three again. It is all so surreal.

But she made such a mark on us. There will always be four of us in this house. Four beings making noises, smiling in photos, giggling in memories, sleeping in our beds.

It is such a strange time. There are very very painful moments. But mostly, I just feel incredibly lucky that we were the ones that got to spend 6 months with her. And we are the ones who get to spend the rest of our lives with her in our hearts, keeping her memory alive.

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