After the chaos of Sam’s procedure being cancelled at the 11th hour last week I’m feeling distinctly deflated.
I’m just really not feeling it today.
I can’t decide if it’s the come down from last week or sheer exhaustion – meds changes are looming once again as Sam’s seizures are becoming ever more uncontrolled, cue broken sleep and lots of comforting a distressed child. In addition to the sleep deprivation, watching your child suffer raises intense feelings of guilt, anger and pure frustration that there is very little you can do to help them.
But then said child will do something quite remarkable and those feelings evaporate in the overwhelming wave of pride and love that consumes your very being.
Take Friday for example. After being fasted for 10 hours and then having the procedure cancelled we brought Sam home and made sure he had some food and fluids asap. My family were visiting so someone could look after the dog while Mum and I waited with Sam at the hospital. Mum, never one to miss a chance to do some play therapy with Sam, was working with him on his physiotherapy roll… the idea being to get him used to being in a 4-point kneeling position, the same position a child goes into automatically when crawling. A year ago this boy of mine couldn’t do anymore than just lie limp across it, barely able to lift his heavy head up to see where Mummy was, too exhausted from seizures to do anything other than just lie there.
It was a strange moment, but gradually the realisation dawned that Sam had been on his roll for a good 5 minutes. And his head was held up. Strongly. Turning left and right in response to noise and voices. His hands were flat on the ground and he was quite happy to hold that position. Then Mum decided that he’d done enough and encouraged him to lean back onto her… with a strength I didn’t know he had in him my little boy used his core muscles and pulled himself up into a position where he was upright but on his knees.
He gave me a look as if to make sure I’d seen him do it, then gently relaxed back onto his Nana’s lap.
That would be the moment my breath was taken away by the force of the pride I felt for this incredible child, who despite fighting an increasing number and severity of seizures is still pushing forward with a determination that would make a Royal Marine proud.
No-one knows what his future holds, but right now, I’m pretty sure it’s going to be an incredible place to be.
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