The following post was assembled into a coherent piece after a night of messaging Graham back and forth from my hospital bed to his Home from Home. A change of tack after the confusion and shock of the previous days. A new stage of acceptance, a way of looking forward and dealing with the lemons we’ve been given.
Some of what follows is his words, jumbled up with mine to form our new family way of thinking. We’re in this together and will be walking on, hand in hand…
Friday 30th March 2018
I had a really positive day today, my best yet.
The first time I really felt like we absolutely CAN and WILL do this. Our lives will be different than planned, but no less amazing. We will learn to spot opportunities and take advantage of new situations. It will change us, stretch us, exhaust us, but ultimately expand our lives.
One of my initial fears was that Poppy would be left behind in her development by her peers doing “normal” things. Today, it was just the two of us for large parts of the day just playing. She learnt so much and grasped so many new ideas from the books we were reading and the craft projects we made. We read a book about senses and she grasped the concept the second we started reading it (“I can see the sun but I can’t touch it”) I realised how important one on one time actually is and it suddenly became clear that far from Poppy’s development faltering, she’s actually going to fly and soar. Maybe in different ways than we expected (or those ways will come later) but she will flourish and thrive all the same.
Those potential “missed opportunities” are exactly that – potential. There are no guarantees of what our lives would have been like anyway. No ‘Sliding Doors’ scenarios to play out wistfully before our eyes. This diagnosis (whilst we would obviously take it away in a heartbeat if we could) has already stopped us getting caught up in the little things and made us evaluate what is really important.
Of course our life will be different, there’s no doubting that. But it can still be amazing. The extra quality time with Poppy won’t see her left behind. If anything she’s going to excel from the extra attention, especially in the areas she already loves the most – reading, cooking and learning about the world around us.
I know there are many stages of grief, but Graham and I seem to have arrived in the same positive, proactive place at the same time and agreeing about these things naturally is so reassuring. Imagine if I felt like this and he was really angry – it would be so hard. We’re a team, like we’ve always been and we’ve got to push on with this positive feeling; it’ll only work if we’re heading in the same direction.
So many people have offered us help and support and we’re still working out how best to embrace this energy. The blog and ways to help we’ve listed are natural starting points and in time, we may think of or need your support in other ways. We know that the genuine offers from people will shine through and the ones with false sentiments will fall by the wayside. If that happens, we’ll let them go and be stronger without them.
We CAN do this, not because we have to, but because we have the strength and support available to us. That’s what we’ve got to do. Not mourn potential missed opportunities, but create new, different ones that will challenge and excite us. Poppy and Daisy will have a great quality of life and so will we.
I recognise that today is a new day and I might not always feel like this. Taking each day as it comes is the only control we have at the moment, but I just wanted to share this feeling with you and look back on it myself if I need a gentle reminder of it.
Most importantly, there is already so much light amongst the dark.
Love to you all x