September is Craniofacial Acceptance Month

There hasn’t been many moments in my life where I’ve felt like turning around and giving a complete stranger a piece of my mind. But it happened once. In a checkout line of all places.

It was a while ago, Jarvis was sitting up in the seat of the trolley and I was facing him. He was smiling up at me and then began smiling at the people behind me, who when I glanced back were a mother and a pre-teen aged girl. Jarvis kept smiling at them and then I heard it. Muffled and whispered but it hit me like a a tonne of bricks. The mother says to her daughter “there is something wrong with that little boys face. Have a look.” Continue reading

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This week I'm grateful for … answers

“I’m sorry that the news may not be what you were hoping for,” the neurologist’s voice trailed off as we moved towards ending our phone conversation.

It wasn’t until he said this that it even crossed my mind that I’d just received ‘bad news’. We had some answers, which was better than no answers. I had convinced myself that no answers was worst case scenario and any other news we could deal with. Continue reading

MRI – three little letters, one big deal

Tomorrow my little man will be getting a MRI test under general anaesthetic. It was supposed to be done by now. A month ago. But the day before his appointment he came down with a nasty cough. Bronchiolitis.

The appointment was cancelled and rescheduled. Left to prep myself once again. And wait, all the while feigning a casual acceptance … but the closer it gets, the more I worry.

I search myself for the source of the worry. I think it comes down to just being plain ol’ scared. Scared of watching him get put to sleep, scared of what the test might say but most of all I’m scared of what it may not say. Because the reality is, the test may not shed any light on why Jarvis has facial palsy at all.

So why do it? Why submit J to a test that, in the words of his Neuro, would be purely academic? Continue reading