Monday, December 16, 2013

It's Complicated

This weekend Leaf has been in the hospital. We originally figured she had a little cold that was setting off other issues, but our lovely little girl managed to show no virus activity from her swabs....not the first time she's done that and still been very sick, so whatever.

The thing is...this sort of experience always make me grieve for others, not so much for us.

We know Leaf will get better in a couple days. We're pretty sure we'll be able to get her trach out in the spring. She walks, she signs, even if she's not talking yet. She's still eating partly by tube, but making progress. Cognitively, she appears to be just fine.

Acorn too, improves each week. He can ride a bike (with training wheels) and write his name. He can do puzzles like a pro, which is new this month. School is going well, with a few bumps, and they believe he's quite smart, that he grasps phonics, that he might be reading some words.

But we have friends who are not blessed this way. Friends whose children will always have trachs and feeding tubes. Friends whose children will never walk or talk. Friends whose children will likely need life long care, for as long as their lives are. Friends whose children face "life limiting" conditions (the polite way of saying that they will die before their parents do). Friends whose children have been through more than twice as many surgeries as my two combined, and who still have many more to go.

It's all about perspective, and it's a complicated way of looking at the world.

Monday, December 9, 2013

When Accessibility is an Afterthought

Yesterday we went to a local Pagan event, held at a nearby city's community center.

The event was exactly as described - lots of cookies on tables, walk around and fill your box of cookies. The cookies have so far been very tasty, and the money raised is going towards funding a building for the local Pagan community, which will be quite welcome.

What was unexpected was the method of getting to the room that the organizers found themselves in:

Yes, that is our double stroller, exactly as long as the elevator is wide, and almost as wide as it was deep. There was not room for 2 adults in the elevator with the stroller - in fact, it was a challenge for me to push the button myself once we were wedged in there.

You know, I get that we're a little strange taking the kids so many places, and that the fact that my 5 year old is often in a stroller is a bit strange too (though if you'd ever chased him through a mall, or had him bolt in a parking lot, you'd totally get why he's there).

But I wonder how many people besides us have found this elevator challenging?

It was clearly put in sometime after the building was built.And I suppose it's better than nothing. But still....