I like to make myself promises.
Sometimes that I will sort out that outstanding bill/bit of housework/general stuff. Stuff that if I just did it would stop niggling away, but really, who can be bothered with it?
Sometimes that I’ll do it better next time. When the moons are aligned and I’ve got my lucky pants on.
But sometimes. Sometimes because something has tipped my world off its axis and the horizon has gone all wonky and life seems irrevocably altered. Then I promise never to take it for granted again.
I’ve tried to write this post what feels like a million times. I promise myself not to overexaggerate next time. It’s not even that I’ve taken to my keyboard with it. Words and thoughts flit through my brain, some settling and jumbling, others tumbling out the other ear. I want to not make it irreverent. I want to not make it condescending. I want it to not be about Divinity. But what is left is making it about me. I promise though, if you bear with me, it isn’t about me or us at all. I can’t promise that it won’t be irreverent, but I need to explain why it’s relevant.
I’ve spoken of this before, but I’ve sort of brushed past it. Given it a wave whilst fleeing past on a bicycle with my eyes closed. This is really an inappropriate time to be so blase, so I’m going to try and get it down and not giggle nervously. You see, on that day in November three years ago, the day where simultaneously Wolf and I, without a word to each other, believed we were being told our child was dying. As simple and yet as unnervingly difficult to comprehend as that. We were on that uncomfortable-too-small-itchy blue NHS sofa together as our world, and I wouldn’t be being overly dramatic when I say almost audibly, crashed down around us. I couldn’t breathe. I couldn’t speak. I couldn’t bear touch. I wanted it all to stop. Just end. If one life was going to end, then everything should end.
My head screamed. I wanted to pull off my own skin. I wanted to drive at 300mph. I wanted, I wanted. But I knew not what. Well I did, but that seemed a long lost dream. For the next 24 hours, until we discovered that our dream wasn’t so long lost, I do not know where I was. My time was punctuated by the tears not falling, but I don’t remember them falling. It was all I could do to just be. Anything else; eating, sleeping, washing, moving felt meaningless and painful. These words feel meaningless and painful, for they cannot describe it accurately. I’m grasping thin air, just as I was then.
So why now, why would I divulge this?
Last weekend, a beautiful little girl, just over a year old, passed away at the hands of her Undiagnosed Syndrome. And the chasm opened, and I grieved. I grieved for her, for her loving and brave family. The tears fell, my heart ached for them. But I couldn’t find the words. Instead I sat and made instead, I found purpose to my thoughts, and began to stitch a quilt.
I carefully chose the fabrics, soft and calm, those that I would chose for my little girl, and I thought of you Lyla.
I wanted colours that were strong and yet graceful, like you Sophia.
With each stitch of embroidery thread, I remembered. And I hugged the quilt tightly to me. I said sorry, just as I had done before, those many years ago.
But I remembered my promise. After that day, I promised never to worry about the stupid, forgettable stuff again. I promised myself I could handle anything from that point onwards. The thing about promises, is they’re hard to keep. But I thankyou, dear, sweet Lyla, for reminding me just how precious life is. Each and every day we have it for.
Sophia and her family have set up a JustGiving page for the Forget Me Not Hospice.
The work they do cannot be underestimated, they offer not only solace and dignity in the most heartbreaking times, the offer support and respite to families dealing with the fear of words such as ‘limited’ and ‘threatening’
Please donate here