Grief, birthdays & the anniversary!

At the end of May Matilda will celebrate her 10th birthday. I am trying to focus my mind on how we can make this a really special birthday for her, within the perimeters of her fatigue and currents likes/dislikes. But you know, for all we are celebrating her wonderful birth, it is also the anniversary of the worst times of my life, the darkest days. On the morning of Matilda’s 9th birthday or maybe the evening before, I can’t recall now,  we decided to call it and cancel her slumber party. As we gave her our presents on that Saturday morning, I remember Marty saying he wished we could re-wrap them and give them to her again as she didn’t seem to really notice them and couldn’t enjoy them as she was feeling poorly. Over the next 48 hours the HSV encephalitis was attacking our daughter’s brain without us knowing and then we all fell down the ‘rabbit-hole’. When we returned from hospital the bags of party supplies were just as they had been and I had no idea what to do with them – mostly they are still in my wardrobe untouched. It is such a strange swirly place to be in – to celebrate and grieve in the same moment. Confusing like biting into food and it not tasting the way you thought it would, you know an apple tasting like a beetroot. I knew that I would start to feel funny as the anniversary of taking her to hospital drew near but the nauseous, weird floating, out-of-body feelings are coming on in waves, that are faster and closer together than I expected. Like being in rough surf, I fear that I will fail to find a clear breath, that I will drown.

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Matilda asked her neurologist if she could see her brain, so here she is looking at her MRI

I had a prelude to this as we were walked around our new hospital complex. At the new wards, our guide said that he was going to show us the nurses alarm systems. I kinda didn’t think about what that meant. Then he hit the little green person – the ‘nurse I need a wee.’ type one, and then the next one – ‘I’m a nurse and I need some assistance in here now.’ and finally the loud tinkling one – ‘RUN NOW, ALL AVAILABLE STAFF, HELP ME SAVE THIS PERSON, WE WILL ALLOCATE YOUR ROLES AS YOU GET HERE!’ My knees went from under me. I will never forget that night with Matilda, as one nurse turned to the other whilst Matilda seizured and said ‘call it’. Luckily for me the head of our mental health team gently  moved with me to another space and chatted to me about Reuben and family. The surf flattened out and I could breath again.

Grief is such an odd individualised thing. I know that Marty, Reuben, Matilda and I will all experience this anniversary in vastly different ways. It’s like an Escher drawing. If you look at our current situation from one angle it appears like one thing and yet from a different angle it is something totally different. Grief and celebration fuddling along together.

Matilda wanted to cartwheel near the top of a cliff yesterday without any apparent understanding of what could happen if she stumbled. Fury ensued as we tried to explain that caution was required in that location. I couldn’t help but think to myself, ‘And there it is, this encephalitis-alter ego, when so often now, sometimes for hours at a time, everything can feel normal.’

We have so much to celebrate in terms of her recovery, her ongoing slow but steady progress, the close-knit love within our family and wider kin, the warmth and compassion of our friends and wider community, the lessens about life and love that this event has shown us (shame it took being slammed against a wall to learn the lessons!). Matilda and Reuben are extraordinary kids but then again I am biased.

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Saying Goodbye in grief.

I was watching an episode of Offspring on DVD the other night, where Nina says goodbye to the ‘ghost’ of her deceased husband. She wants him to stay with her but needs to be able to really live her life. She needs to say goodbye. Bizarrely, I feel slightly the same about some of the most awful moments we went through in the hospital. I almost don’t want to let their memory go because they remind me of just how special, wonderful and brave Matilda, Reuben and Marty have been. Without those clear memories, maybe I will forget that the wonderful version of herself that she is today, has been really fought for, enduring so much to get to where she is now.

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Sewing a pillow-case with the lovely Joanne last weekend.

So there we are, grief and joy together. Birthdays and anniversaries. Being bowled over by feelings and knowing that many friends are coping with their own stuff, worse stuff. Its such a muddle to be a human sometimes 🙂

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