Living with Fear

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.

OMG! We're not alone!

I met another family with a little boy with a trach today.

Another *PAGAN* family, with a little boy with a trach.


How cool is that?

Convocation updates coming eventually, when I've had a bit of sleep and am not hurting quite so much - I taught three workshops today, and stood for most of two of them, and my hips are protesting greatly. In the last few days, I've seen fabulous artwork, cute t-shirts, amazing gemstones and crystals, and piles of books. I've gotten hugs froom many old friends, and I attended an interesting workshop that was, for me, rather surreal. But for now, I think a soak in the bath tub is in order, and a substantial snack before I head for an early bedtime.

Thank goodness for an early nurse tonight.

Why you should read my blog

My friend @kysilka posted this challenge:

I hereby challenge YOU to write a blog post on one of the following two topics.
 
1.  Ten Reasons Why You Should Read [Whatever it is I Write], or
2.  Why I Write. 

So, I'm pretty sure I won't get to ten reasons, but here's a good start:

1.  My kid is super cute, and while I don't post many pictures, sometimes I give you a little boost for the day:

2. How many Pagan moms with special needs kids are there anyway?

3. Even more than that, a Pagan mom with a special needs child who's medically fragile but getting better every day? I'm sure you like to cheer along with us for all our little successes, like eating:

4. If you've ever wondered about cloth diapers, potty training, and potty training without buying a zillion throw-away trainers, you should read my blog.

5. Or, if you think I'm occasionaly interesting or insightful. Or if you find me irritating. I mean, really, why should I justify how you spend your time?

Hm. That's 5. That's half way. Which I guess means this is a half-a$$ job, but that's what you get when I'm up to my eyeballs at work.

out of the house

One of the things that we always said was that we weren't going to be the kind of people who let having a child end our (rather limited) social life. We don't get out much as it is, and those few social connections are important.

Today was one of those days. We drove well over an hour to spend the late afternoon and into the evening watching movies with friends...and brought Acorn along. Having friends who aren't overly fazed by him and his accessories is good - makes things a little more normal for us, all things considered. Especially since it's not like we can just call some local teenager to come babysit for us.

We left early enough to get home, get a sleeping Acorn up to bed, and get a portion of the gear out of the car before the nurse pulled up.  She's staying late  in the morning too, so we all get a litttle more sleep.

Which is exactly where I'm headed, as soon as the diapers finish thier rinse cycle so I can get them washing.