One Year…

One year

12 months

52 weeks

365 days

8760 hours

525600 minutes

…is a long time. It feels like forever and also like no time at all since Eilys was here. But today marks a year since she died. It is an anniversary I have been dreading. This year has been so hard to get through for so many reasons, most of which I didn’t even foresee. Eilys was always so present, so involved and she left a huge hole in our lives, in our family. I miss her in some way every minute of every day.

People say to me a lot “I can’t imagine what it has been like for you” and I always tell them not to even try because the reality is worse. Losing a child is awful, beyond awful, beyond words. I wouldn’t wish it on anybody. It hurts like a physical pain and it is something that is always with you. And as much as it hurts me I don’t want the pain to stop because it is a reminder that she was here and she is loved.

I am reminded of Eilys by so many things and luckily most of these are things that make me smile. When I see a butterfly, I think of her. One of the first things we ticked off her list was going to the Zoo and at the Zoo I was talking to one of the Zookeepers in the butterfly house. She was talking to me about the butterflies they had there and she said that the most beautiful ones came out of their chrysalises and only lived for about 2 weeks before dying which seemed very poignant at the time. We also released butterflies at Eilys’ funeral. So they will always remind me of her.

Eilys’ name is a derivative of the word for “Snowdrop” in Welsh so I think of her whenever I see snowdrops. After she died we had a cultivar of snowdrop offiicially named “Eilys Elisabeth” after her. They are such beautiful and strong flowers, like our lovely little lady.

Whenever I see a Robin I think of the phrase “Robins appear when a loved one is near” and again, I think of her.

Rainbows make me think of Eilys because she was so bright and she made everything better. I like the idea of our next baby being a “rainbow baby” but I would never think of Eilys as a storm. She was the sun that shone on the rain to make the rainbow because even when she was at her poorliest she managed to make us smile.

I find it very hard to not buy Kinder Eggs as they were her absolute favourite. As the chocolate was really thin she could manage to eat it herself and she loved chocolate. Also the little toys inside were often exactly the right size and light enough for her to play with. She especially loved the Disney Princess and Barbie flower rings they had inside them.

Purple was her colour and it will always make me think of her.

Helium balloons were her favourite “toy” as she was able to actually play with them as they are so light and they will always make me think of her. After she was diagnosed we would always have at least one in the house at any time. She had all sorts of helium balloons! And for her birthday all of her party guests bought her one so we had loads of them for her to play with.

I can’t watch Finding Nemo or Wall:E because of the music in them. We played some of it at Eilys’ funeral because they were her favourite films but I just end up in floods if I watch them. I had really wanted to take her to see Finding Dory but it came out 2 days after she died, I doubt I’ll ever watch it now because it would break my heart that she can’t.

Today we are going to try to do something nice to honour her memory but it is so hard to think of what to do. Her dying was only such a tiny part of her life. We don’t want her death to define her because she wasn’t just a baby who died, she was a baby who lived! I try really hard not to dwell on the what ifs and  the what would she be doing now. Actually, I don’t let myself do this at all. Thinking about the things that Eilys wasn’t isn’t how I want to spend my time. It minimises all the things that she was. She did so much in her short life and that is what I want to remember, not the things she missed out on. That’s too heartbreaking and unfair. Eilys was so much more than her diagnosis. She bought so much light into our lives and her memory has helped a lot of people. And that is what I want to remember. I want to remember all the good. The good times. The good memories. And the good things that have come from her being alive.

Like I said, I miss her every single second of every minute of every hour of every day and I will do, I hope, for the rest of my life because she will always be a huge part of me and our family.

I miss her beautiful smile.

I miss how she had totally different smiles for different people (her wary smile for Dylan, her whole face smile for Dylan, her cheeky smile for when Dylan was getting told off, her besotted smile for her Daddy, her knowing smile for me…)

I miss her cheeky side eye that she’d do when someone was being silly.

I miss her “hedgehog snuffles” when she was sleeping.

I miss her wah wah wahing that she would do with Dylan.

I miss the adorable noises she would make.

I miss softness of her hair.

I miss the warmth of her skin.

I miss the weight of her body when I held her.

I miss the way her neck would get all stinky.

I miss her beautiful fingernails.

I miss her laugh.

I miss her giggles.

I miss her gorming out to Pepper Pig and Small Potatoes.

I miss how she would look a bit like an otter when she was in water.

I miss her beaming face as I pushed her round in the pushchair.

I miss the way she would “play” her suction machine during physio.

I miss how she make noises as we did chest physio for her so that the patting would make her voice vibrate and then she’d giggle about it.

I miss how she would light up a room with her smiles.

I miss her hitting me in the face when we were lying in bed together.

I miss how she would do the loudest trumps.

I miss how pleased she would look when Dylan was being naughty.

I miss how happy she was playing with a balloon.

I miss her playing on her modified baby gym while I did a workout and how she would giggle at me.

I miss her looking adorable in hats and sunglasses.

I miss getting her dressed in the morning and buying her clothes.

I miss taking silly selfies with her and playing with snapchat filters.

I miss her rolling her eyes at me.

I miss giving her cuddles.

I miss giving her kisses.

I miss her making a mess feeding herself chocolate mousse.

I miss her.

I just miss her.

And that is the hardest part, the missing her. A year is a long time to be apart from someone that you love with your whole heart. And today, I am going to let myself wallow in that feeling and I will allow myself to fully miss her. But then I am going to pick myself back up and again and carry on. Because Eilys would want us to carry on with her in our hearts. She didn’t let anything stop her from smiling. She was happiness and joy.

There was a poem read at my Gran’s funeral last week and it resonated with me so much and made me think of Eilys too. It is by David Harkins…

You can shed tears that she is gone,

or you can smile because she has lived.

You can close your eyes and think that she’ll come back,

or you can open your eyes and see all she’s left.

Your heart can be empty because you can’t see her,

or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday,

or you can be happy for tomorrow because of yesterday.

You can remember her only that she is gone,

or you can cherish her memory and let it live on.

You can cry and close your mind,

be empty and turn your back.

Or you can do what she’d want:

smile, open your eyes, love and go on


  Eilys Elisabeth Hartley

12th June 2015 – 28th June 2016

Thank you for reading


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