This September has felt particularly difficult. I am reflecting on last year which brought us a big surprise and wondering what's around the corner for William. It seems this summer has been a great one for many of his school friends in many different ways with lots of celebrations of different achievements. And yet for William there's never anything to celebrate, he never makes a step forward in his health, he never develops a new skill. This summer has seen a step back with seizure control and more difficult conversations have been had. I've just been wishing for something good to come William's way for a change.
And then I got to thinking and chatting with my lovely friend and William's carer, Michele, and I started to see it all a bit different.
I've felt for a while that in a way William shouldn't be here. If you look at the cold hard facts of his medical needs you can wonder how is he still here. Tonight I've been reflecting;
- In July 2010 my unborn baby boy was diagnosed with a devastating brain malformation. The radiographer told us he might not survive until birth, the neonatologist told us he would never got to school and Wikipedia told us he'd unlikely live past 2.
- In May 2011 William stopped breathing in the car either as the result of a seizure or chest infection. Steve perform CPR on the hard shoulder and a passing police car picked us up and blue lighted us to A&E.
- In June 2011 we put a DNR order on him, he was having frequent seizures where he would simply stop breathing. Our consultant told us he had a very severe case of epilepsy in infancy and we were not in a good situation. It was a very real possibility that he might not make his first birthday.
- In September 2012 our consultant returned from a years leave and told us she hadn't expected William to have survived the year she was away.
- In April 2015 we met with the respiratory team at our local major hospital. William was struggling with his respiratory health in several ways. The lead PICU consultant told us he was surprised William hadn't had an intensive care stay as a result of a chest infection given how he was presenting.
- In May 2015 he developed a chest infection and we thought our first PICU stay was upon us. But the situation turned around over night.
- In October 2016 William went into DKA with un-diagnosed diabetes. We were told he'd been maybe 48 hours from death had we not acted when we did.
So you see, my boy might not be improving but he's living, and he's more well than he should be. So we might not be celebrating a new skill or seizure control but every day we will celebrate that he is with us. And we will thank our faithful God that we've already been blessed with more days and more good health than anyone thought we might get. And we will pray for so so many more good days.
