I don't know about all special needs parents - I only know my own experiences, and those of the support groups I'm active in.
But I suspect most of us, particularly kids with medical issues that leave us dependent on technological gear and little pieces of plastic, live with a secret: we're terrified.
Oh sure, most days we go about our lives, living them just like everyone else (or as much like everyone else as it gets when you're hauling around a kid with wires and tubes attached to beeping boxes covered in lights). But burried deep in our hearts is fear.
Most of it is fear of what if:
What if the power goes out
What if we're in a car accident and no one who comes knows how to suction
What if we can't get our supplies
What if I lose my job and thus our insurance
What if my child stops breathing...or worse, what if they stop breathing and I can't get them started again.
What if this formula doesn't work for my child either
What if this procedure doesn't work. Or the next one. Or the next.
What if we've missed something.
Many of us live with the knowledge (which I've written about before) that children die. Children like ours, with the same diagnosis as ours, and the same equipment. And we're sometimes not sure why our child lives, while others so similar don't.
This week fear came home to roost for some of us. Someone we know, with a child with a trach, lives in Japan, though the mother and children are Canadian citizens. They lived between Tokyo and the damaged nuclear reactor. They can't get reliable power, don't have a suction pump capable of making the flight to North America, and can't get to anywhere else that's any safer.
And we're all living this experience vicariously - knowing that (hopefully) we've planned for every possible natural disaster known to us....and yet, clearly, it's not that simple, because this family can't stay in their home, can't afford to fly to Canada, and can't seem to get enough help to get out.
This week we're watching someone we know live some of our worst nightmares. It hits far far far too close to home for comfort.
As close as we are to decannulation, I can't help but think "what if it was us" - and I know a lot of other parents thinking the same things right now. I can only hope we're all lucky enough to never find out first hand.