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?
It was recommended as it may shed some light on the source of his paralysis. Something that the MRI done when J was just one week old failed to do – there was too much movement and the scan wasn’t cut right to show up a tiny nerve, or lack thereof.
So this time, we’re looking to see if there is a nerve nucleus on the right side at all. If not, we can be pretty certain it was a developmental defect.
If there is a nerve there, it may have been damaged at some point in utero or during the birth process. If that’s the case, there could be a greater chance of alternative therapies such as acupuncture or sacral cranial therapy working. But then again, there may be no answers. And that’s a risk we have decided to take, and that’s the outcome I’m in the process of preparing myself for.
I’m a big believer in ‘knowledge is power’ and hopefully this test, no matter how much or how little information it uncovers, will benefit J when he’s old enough to manage and make decisions about his own condition. I want him to know we did everything in our power to find out about his particular facial palsy, so he can then use this information to find peace with it or make decisions on surgery such as nerve grafting if that’s the path he chooses down the track.
To me, and everyone who knows him, J is perfect. But the reality is, there can be complications with facial palsy that require constant monitoring. He can get eye damage from his eye drying out and we need to watch his speech as he may have trouble sounding some words. His neuro needs to watch his development to see that any problems remain isolated to his facial nerve.
The outcome of the test probably won’t change anything for me – it would be nice to have some sort of definitive answer, but whatever the outcome I will still carry a nagging sense of guilt. If it’s developmental, I’ll probably ask myself if it was something I did or didn’t do while I was pregnant. If it was damage to the nerve, I’ll always wonder if it was a decision I made along the way as to how I birthed that caused it. Too little intervention? Too much?
I know that this energy is pointless and I will never know the answers to these questions or whether they are even relevant. Maybe, just maybe, this test will be my line in the sand to concentrate on redirecting this energy in a positive way, to let myself off the hook and get on with helping to guide my boy into being the best he can be. I try and remind myself that it’s just one of those things.
My baby boy will be 17 months this week. He is still crawling his way around, seemingly unconcerned that most of his peers have been walking for months now. He only says a few words amongst mostly uncomprehensible babble.
I push my worries aside … he’ll get there, he’ll get there. And I’ll get there too. I’ll let you know how he goes (and if I get out of there without losing my shit!).