After our double hospital day last week, when we travelled 2.5 hours from Carmarthen to Gloucester and eventually made it home around 9pm, we were unsurprisingly exhausted. I bathed the girls, whilst my lovely mum popped to the fish and chip shop to reward the girls with the foodie treat we had missed out on our seaside holiday. As ever, Poppy always knows how to celebrate, and I had to giggle when I heard her organising Daisy into their only pair of matching pyjamas, complete with necklaces and hair bow accessories. She even decorated the table with candles and random ornaments. I don’t know why her joie de vivre still surprises me, but her incredible ability to gauge the mood and tone of her environment is astonishing at her tender age – no-one had really spoken of it being a celebration, but yet she picked up on that in her own special way. It reminded me of her baking a cake when she was first released from Bristol Children’s Hospital, instinctively knowing that we had something to celebrate. A happy, joyful evening followed as we tucked into our late dinner and fell into our own beds. Unbelievable that a day of so many twists and turns, and grey walls should end in such joy, but that’s Poppy for you! Graham arrived home just in time to see the girls before bed and was met with delighted smiles and open arms.
The bump in the road was inevitable. We’ve had a fantastic summer, filled with adventures, but as the weeks without any unexpected hospital visits stretched into months without, we knew it would happen again sometime. Unfortunately, it happened not long after arriving on holiday!
I wrote this in mid-July and forgot to publish it! A double post day, the next one is more current x
Poppy has completed her settling in sessions at school and will make her next visit there for real in September! The uniform and name labels have been ordered and we’ll need to make a date to join the crowds in late August to buy the shiny school shoes that she has been coveting for the past year. Poppy has loved each session she has attended, to the point where she was disappointed to learn that the end of nursery is followed by the summer holidays rather than an immediate start at school! She even managed to attend on the final day of her steroids, which has flooded me with confidence for the start of term. They fall at the best possible time in September, giving her 3 weeks to adjust to life at school before being faced with that particular challenge. There is no way of telling how we’ll cope, and as each time can be so different and unpredictable, we’ll decide how best to manage when we get there. Poppy may be able to attend school at that time, and she may not, but as I’ve said before, what will be, will be! I feel that more than ever at the moment. The last few months have been life affirming for all of us, containing so many more adventures and healthy days than we thought possible.
Yesterday afternoon, Poppy had her first settling in session at school. She was excited about it all morning, but this gave way to nervousness as we walked up from the carpark and we stopped for a shoulders-squared “it’s okay to be scared doing new things, but I know how brave you are” pep talk before continuing. It did the trick. She spent a happy hour with her new classmates and the current reception class and came out beaming from ear to ear at collection time. So much so that several other parents commented on her beautiful smile! The sense of relief at hearing her tell me she loved it, before I even had a chance to ask was immense. I may have braved that pep talk, but inside I was as broken as she was watching her excited smile falter, whilst also knowing that she needed to take this big brave step. A braver step than most given how much she has already braved to reach those school gates.
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.