Wednesday 30 December 2015

Now famous smile

My boy turns 7 in February. Seven years. Not a day goes by when I don't think about our alternative life. The one where he is 'normal', the one where he gets to open his presents like his sister, or ride his bike, or play, or run, or eat. If I dwell too long it becomes overwhelming, I shut it away in the box marked never to be opened and continue with our ordinary. 

The one where Zack is incredible. The one where I have to fight and argue and speak for him every day. The one in which I recognise every single tiny milestone as a miracle. 

But the other day I was reminded of how far he has come when his sister came out of his room carrying the first toy that made him laugh. A little rattle that claps together when you shake it. I still remember that day as clear as anything, he was only 10 months old and hadn't laughed at all, it took him months before we got his now famous smile. That day he'd had an EEG done (the first of many) and the nurse gave him the toy to play with I shook it and he laughed. That was one of the best days of my life. My son was not lost, he was very much present.

Now seven years later I was a fool to think he would never accomplish much, he has achieved greatness and continues to show me what he can do despite the severity of his disabilities. 

That laugh, that beautiful laugh, that can turn into extreme fits of giggles is his greatest gift. 

And now, now, thanks to more regular therapy he sits better, holds his head for longer. He is learning to use his eye gaze technology working towards some method of communication. He is maturing and growing, he is becoming a cheeky little boy, but is the most loveable being in our house. 


I want to alleviate the fear of death

The other day I caught up with the last Season of This is Us. It's been running for a while and is the story of three children and the o...