The usual blog plus Writing 101 – day 12

The usual blog plus Writing 101 - day 12

The only constant in life is change – so the saying goes. I believe it’s true. Times change, people change, circumstances change and we are moving on. Next year will be a different year in Peterborough, new house, new students and new cognitive improvement exercises for Simon!
I had a great meeting with Mr Coppins (Matt) today reviewing Simon’s year – the hard work he has put in has resulted in great progress – one day I will do a post about the changes I and others have observed throughout the year and those that Simon has seen, if he approves of that idea! In the meantime I am just putting this out there – I am very proud of you, Simon! Which neatly brings me to Writing 101 – (Virtual) dark clouds on the horizon – write about a real conversation and the dark clouds alluded to in it. This conversation happened almost 19 years ago to this day and I can remember it so very clearly as I have rarely been so shocked and hope never to be so again.

It had been a long road and perhaps we should have seen the dark clouds on the horizon. I know the exact moment they came into being. When we were called into the back room to talk with the Professor of Neurology just as we had been told we could take Simon home the following day. Taking him home – those words were so thrilling to hear after the trauma of 18 days of our tiny boy in intensive care and 10 days in the recovery ward. 18 days with tubes everywhere, infusion pumps with medications trying to get his newly repaired walnut-sixed heart to pump regularly, so many things that could go wrong and did go wrong, a new and terrifying experience to us, spending hours by his bedside, such a little body on the big bed, willing him to stay alive. Taking him home – sheer joy dashed away only moments later.
The professor of neurology was clearly disturbed about having to have this conversation with us, indeed I would go so far as to say, if he could have avoided it, he would have. That probably would have been negligent so he didn’t. The CAT scan, of Simon’s brain, showed some profound changes – areas of white opacity all over the place, probably as a result of his prolonged low blood pressure post-operatively. The implication of this was completely lost on me, but not so for my husband, given that he is medical, though in another field entirely, I suppose that is not surprising. He had been researching the neurological signs that Simon was displaying, quietly terrified by what he found but not saying a word to me. The professor started out by showing us the CAT scan which meant nothing to me. He went on to say that whatever he said we should take with a large grain of salt as “cardiac babies” usually do better than he predicted – I still hadn’t really grasped that anything was untoward. He stated that the white opacities may have damaged Simon’s brain though to what extent he couldn’t say, they may lead in a moderate disability, say a difficulty with maths, or planning or maybe something more … hedging, hedging, not daring to say what he didn’t want to say, until my husband challenged him. “Ok, will he walk or talk by the time he is 5?”. Well, you could have knocked me over with a feather, I had been so focussed, pouring all my energy into keeping this tiny boy alive It had never occurred to me that there would anything more once we had got him through those rocky days in intensive care. “I can’t say” he answered. “Remember the grain of salt” – it wasn’t much consolation at the time.
Those dark clouds looked so forbidding, coming straight towards us over the horizon. We had no idea what was in store for us, for Simon, for our family. But, you know, we have dispelled them. the sun shines brightly! I know because I just had a call from Simon “Mum, you’ll never guess! It’s hysterical, we are stuck in a tunnel in Canada’s Wonderland because there is such a massive storm outside! I’ll see you when it finishes!” Such excitement in his voice, such joy in my heart. There may be a storm out there but I see sunshine and rainbows.
We’ve all come a long way together, since that dark day in the back room with the professor of neurology. Slow and steady wins the race, we are still racing but we are almost there at the finish line.


9 thoughts on “The usual blog plus Writing 101 – day 12

  1. Sitting here with tears in my eyes and running down my cheeks Mxxxxxx ________________________________________

  2. Stopping by from #writing101 commons. Beautifully written. I enjoy your style of writing, it feels like a conversation. When I first started reading, I felt like it was going to be a post about Alzheimer’s – but that’s my journey. I felt my heart sink when I saw it was your baby…and I even read the 19 years part…but as a mom, I can’t imagine. Yay Simon. Thank you so much for sharing. Well done on the assignment.

  3. I remember so well coming to visit Simon in hospital and how small he looked and how many tubes/wires/machines there were. It was such a frightening and sad time but thank goodness he was born to you. I guess you can’t keep a Chapman down! loads of love xxxx

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