Whisper it…

March this year was unsettling and unnerving with so many memories of last year and the horror that unfolded before we had time to process what was happening. Scrolling through photographs on my phone, I was met with joyful photos and memories of early March 2018. Those photographs suddenly seep from home into hospital and it’s the speed at which that happens that still chokes me to this day. It was so fast. There are no photographs showing a gradual illness occurring, only heaps of laughter in the snow just a few days beforehand.

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Back to where it all began…

21st March. A year to the day that Poppy first became ill. I don’t think I’ve ever written about that day before, only from the point three days later when we arrived in hospital and didn’t go home for two weeks. Looking back on it, it was actually quite an odd day for various reasons. A strange series of first time events which stand out now that the day has become so significant.

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Are we okay?

It seems my last post has worried a few people. Murmurings of whether we’re okay and messages offering help or support have flooded in again. I’ve reread the post and perhaps I am becoming desensitised to all of this, but it seems no worse to me than any other. There’s no great reveal or change of circumstance, I suppose I’ve hinted at steroid anxiety before, but not known how to spell it out. Perhaps it’s given a better idea of what our day to day life is actually like. It’s still very hard to get that across, and whilst I try to be honest, there is so much more going on than I could ever write about. It’s an insight, but not our lives laid bare.

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Hope

They say the first 6 – 9 months are the hardest. By ‘they’, I mean the medical professionals around us and the other parents I’ve spoken to who are facing the same diagnosis with their own child. I held on to the first part of that dearly throughout those early months and was so surprised when at 6 months in, nothing at all seemed easier. Without realising it beforehand, I had expected that everything would suddenly and magically seem okay with the passing of those first intensive months of treatment. How laughable that seems now! But I now know how closely I was holding onto hope. I had to believe that we would find a way through this, and that things could and would get easier to bear one day.

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A previously unpublished post from September


I wrote this post some time ago in mid September, but left it unpublished. I think it’s an important part of our transition from Delayed Intensification to Maintenance, so hopefully it’ll fill a few gaps and explain a little bit more about the Maintenance phase involves. Please note that I’ve left this post in the present tense it was originally written in so Poppy is not currently in hospital as you may think when reading it, but rather playing happily at her grandparents house with Daisy! x 

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Keeping life simple

A deep breath. Seems a good place to start. I thought I’d left September and the seemingly endless wobble behind me, but October brought another unsteady path to tread. My last post spoke about feeling brighter, and that was my absolute truth in that moment but unfortunately that renewed sense of self only lasted a few days before the despair returned. The positive persona that people tell me inspires them seemed to have left the building and no matter what I did, I couldn’t scrape it together again. I didn’t even really feel sad, I felt numb. Completely devoid of feeling, all the usual tactics which would help me stand tall again after a slump weren’t working and I couldn’t find my happy.

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