I don't look to the future very much anymore. I barely plan next week let alone next year. I can drive friends insane with my vagueness when meet ups or other engagements are attempted to be made. The family calendar is only flicked through if it needs to be.
Gabriel has taught us all to live in the here and now. And worry about tomorrow, well tomorrow.
It has to be that way when you have someone like this dude in your life - because he decided from day one that rulebooks were for losers. Conventional guidelines and typical milestones are just not his bag.
With no diagnosis, Gabe's future is wide open (or not) and everything can be achieved (or lost).
It is not worth dwelling on as who knows where any of us is headed. Instead we celebrate every little moment, every golden nugget of normal.
But in the past few weeks, something has been bubbling inside - gently stirring and energising us as a family.
There is hope.....
It started with some shadows of improvement on his growth hormone treatment - extra strength in his legs, more alertness, fresh motivation to move, all sprinkled with added defiance and cheekiness (but hey ho!). Then school commented on how much more chatting he is doing. Trying to converse with his baby babble and trying out new words. Every day working hard to make himself heard - the child who just sat passively amongst us is very much the centre of attention - making us laugh with his antics and testing our patience with his temper toddler tantrums.
|Gabe says: "Now I am big and strong I can duff you up!"|
Then we took him to Brainwave this week. This is a neuroplasticity programme that we fundraised for because it is expensive but worth every penny it seems. For two days you have an experienced physiotherapist and play/cognitive expert assess your child and come up with a holistic programme to gently nudge them forward.
To be honest it was just wonderful to have the two days to play with Gabe. Our other two children were still at school and then at a sleepover at their cousins' house. They were very well taken care of so it was guilt-free golden time with the youngest.
Everything he did in those two days was scrutinised by the experts, debated and then fed back to us. It turns out the complicated gorgeous boy is not so complicated afterall.
They had seen his kind before. These delayed divas who are in no rush - thank you missus.
Things were explained that kind of made sense if only we had thought about it before. Missing vital development steps when he was a baby, either because of his low muscle tone or illness, has left him plagued with sensory issues - from forgetting his hands belong to him to not putting anything in his mouth. All of which can be overcome with the right intervention.
In the same way, his body forgot how to instinctively get to the next step. As his peers got busy with their blink and you'll miss it development, he was spending quality time playing "guess my ailments" with doctors and nurses.
We have seen a lot of therapists in the past three years - some better than others - but mostly they like telling you what's wrong and pursing their lips when we tentatively ask about the future. Brainwave is different because they focus on the positive and are not afraid to look ahead.
"There is no reason not to expect normal movement one day.
But you are going to have to show him how."
These are words we thought we would never hear. That is not to say that we are being naive - of course it is obvious that there is some sort of learning or motor planning issue amid it all - but the potential to move normally at some point is a gift to cherish.
It is time for us to get busy with this new programme. Time for us to knuckle down and work hard. We need to coax him to the next steps. Then the steps after that. And after that again. No matter how long the road is. No matter how tired we get.
|The journey back from Brainwave|
Because right now it feels like we can do this.
Right now we are filled with hope.