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.
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.
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.
Oops, that was a bit of a disappearing act. I know that pride comes before a fall, but I didn’t realise that can happen with hope too…
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.
Knowing how busy this time of year can be and how quickly dates can fill up, back in November I’d earmarked several dates in my diary which I wanted to keep clear for potential days out or activities together. Carefully devised to avoid the mid-December course of steroids and allow Poppy some quiet time in between busy days, on paper it looked perfect.
I’ve been meaning to post an update for a while now, but various other things have been keeping me busy in the evenings when I would usually find some time to write. Now that my Christmas to do list is seemingly under control, I’ve found myself a moment to recount recent weeks.
I wrote most of this back in December, after Poppy’s latest lumbar puncture. With another one taking place last week, I’m reminded that I left this unpublished, so here it is to express our ongoing gratitude to the NHS and some of the special people we have met as a result of our experience…
I’m aware that my posts of late have focused on myself and how I’m feeling. I’ve needed a way to muddle through and come to terms with those feelings and writing them down has really helped, as has speaking them aloud to the various people who have asked. I’m also aware that you may well be wondering how Poppy is getting on as an update on her progress is long overdue.
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