2 years without Eilys

I can’t believe that it has been 2 years since Eilys died. 2 years. I say these cliches all the time, it feels like forever ago and no time at all. Some days I wonder how I have come to this point. None of it seems real. Eilys was here and now she isn’t. It just seems surreal. I suppose it is the way that most grieving parents feel, how has this happened? Why us?

I find myself 2 years down the run, still struggling with this new normal that we find ourselves in. I still have shaky days. I still cry at certain songs, I cry a lot at the cinema (even during Jurassic World). There are still trigger places and trigger items, triggers. It is near on impossible to wallow in the grief and sadness that envelopes me at times. How can I be sad when I have lil’ Mr Groofy Chops giving me a cuddle or Dylan telling me that he loves me?

2 Years down the line despite my near constant drum banging about allow grief to unite us rather than divide us I still find myself telling myself that I am not entitled to feel sad. We had time with Eilys, we made memories with Eilys, her death wasn’t traumatic, it was beautiful and we have Dylan and Evan… so why should I feel sad. Ridiculous. So today I am going to allow myself wallow in being sad. I am going to listen to “Vincent” by Don McClean on repeat all day if I feel like it, I am going to watch Wall:E maybe, I am going to take Evan to the park and sit on Burma Star Island where we released Eilys’ butterflies and I am going to let the sadness wash over me and I am going to let it out. Because I am allow to feel however I feel, whenever I feel it.

In the passed year I have become more involved with and more vocal within the child loss community.  It is an amazingly inclusive community and for the most part people are so warm and kind. I think because the more you learn about how other people have lost children the reality of loss becomes quite overwhelming. Sometimes I find the grief community so stifling because my experience was so different to most.  Of course I wish Eilys was still here but at the same time I wouldn’t have wanted her to carry on the way she was. It is such an emotive issue, that of quality of life vs quantity of life. At 1 year old she was already so passive and behind her peers which wasn’t too bad for her because she didn’t understand that she was. But as she got older it would have become so painfully obvious how different she was to others. We were lucky that she as so well for a lot of the 6 months that we knew about her condition, she was able to do most of the things on her list and she smiled and giggled through it all. At the time Eilys was so so lucky to get passed her 1st birthday with SMA type 1 as most babies die before they are 8 months old. When Eilys was alive at any time there were about 20 children in the UK with SMA type 1. But now there is this treatment called Spinraza so (as I understand it) most of the babies in the UK with SMA type 1 are now having this treatment and at the moment there are about 80 children in the UK with SMA type 1 which is incredible but devastating at the same time. Like I have said before, I sometimes think about maybe she could have been given Spinraza (the SMA treatment that was approved for use 6 months after Eilys died). And yes, it might have helped her live longer but what quality would her life have had? It is hard moving on knowing that if she had been born a few months later or if spinraza had been approved earlier would she still be here now?

But 2 years on. 2 years! How is that even possible? The more that the time passes I feel further away from her which is hard. I can’t remember her exact smell which was always very cakey and vanilla-y. I can’t recall how heavy she was in my arms. I can’t remember the pressure of her gentle squeezing fingers on my hand. I can’t recall all the wonderful noises she used to make, the way she sneezed, the exact sound of her laughter or the snuffly noise she made in her sleep. So many things that I wish I could do one more time. So many things that we didn’t think of doing that we will never be able to do. No regrets at all but so many what ifs and buts, none of which ever help.

The thing that people say to me the most since we lost Eilys is “I can’t imagine what you have been through” and my response is always “Don’t even try”. But I feel more than that. I hate the phrase “what you’ve been through” like Eilys was something to be endured. She wasn’t. She was the best dream I have ever had. Yeah, there were some utterly shite bits of that dream but it was a privilege and a joy to have that dream. I am forever changed because of her. Changed for the better. Eilys made me more compassionate, less angry, more patient, less pessimistic and more open than ever before. And all the negative things that have changed in me are only because I loved her. I am more protective over the boys because I loved her so much, I sob in the cinema because the dark and noise seems like a good place to allow the grief to flow. I am quick to anger at certain news stories because I understand the pain afterwards and how hard it is to move forward from it. My sense of humour has got darker and I have become blunter all as ways to protect myself and to deflect from my sadness. All in the the positives outweigh the negatives. On the whole I see the good and the positives in the world, I keep my glass at least half full and I push forward because looking back, as comforting as it can be, is a futile thing to do and I am needed in the present.

So on the anniversary of Eilys dying please hold your littles closer (even if they aren’t that little anymore), give them an extra few kisses and if you would like to please light a candle for her at 9:15pm (she died at approx 9:15am but who lights candles in the morning?!) to join in with her wave of light. I love wave of lights, they give me a lot of comfort but I cannot explain why.

Thanks for reading

xx

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