Thursday, December 13, 2007

So, where are they?...

The other blind kids that is. Where are the other Zelda's? The other smart, saucy 2 year olds that are each day learning to live in a seeing world, starting to learn Braille, learning to look towards a camera and smile when they don't even know what a photo is...

On Saturday, we went to a "Blind Santa" party - at least that's what I called it. It's an annual fĂȘte thrown by the Division of Blind Services for kids with visual impairments and their families. Santa was there along with an elf with big ears. The entire family went and the twins seemed to have fun BUT I didn't really see any other blind kids - at least not ones like Zelda. There were several CP children with multiple disabilities, lots of babies held tightly in their mothers' arms - but where were the white canes? Where were the pre-schoolers and their parents that I could meet and ask for advice and share stories and milestones? I know you're out there, I just know you are. There are other Zelda', how do I find them?

On an ironic note: our neighborhood is being overtaken by solicitations for charities - many of whom don't exist. My favorite was this rather ill-kept guy who came into my shop the other day and handed us a piece of paper (real documentation!) with a website and all, asking for money to send the 5000 blind children of Austin to a holiday party at a shopping mall. Hmmm...5000 blind kids right here in Austin. You see, I knew they were out there somewhere!

Friday, December 7, 2007

The elves are coming to town...

and they're named Creed and Zelda.
This so cracks me up!

Tuesday, December 4, 2007

So sometimes one has to write about the not-so-fun stuff...

so Zelda had a seizure last week. It's the first one she's had since January - but even then the neurologist was only calling them "spells." You see, it all started last summer (2006) when she was just a babe. They say that kids born with toxoplasmosis can have seizures and Zelda started to have some unusual 'episodes'. Basically it goes like this: she gets quiet, she gets pale, her lips start to turn dark purple, she is unresponsive and her hands are limp. I would pick her up, rub her back and in a minute or so she would stir and then fall into a deep sleep for an hour or so. Last fall we called EMS several times and she was hospitalized for days on end, hooked up to an EEG to chart her brain waves. And still, no evidence of seizure activity. They would just send her home. Finally right after the New Year 2007 and yet another 'episode' and trip to the hospital, we pretty much demanded she be put on some kind of medication. So, since then, she has been on Keppra. She has done so well...until the other day.

It's no fun to get that call from your nanny while you're getting ready to go home from work. Luckily, my shop is 100 yds away from home so I ran when Candi called. We called EMS and Zelda's neurologist and all concur that it was a breakthrough 'episode' related to a high fever. She had been snotty and sick all week. But now we watch and worry and wait. Will it happen it again? Probably. It sucks.

But Creed was a champ. He watched, he was quiet and when Zelda finally fell asleep on Evan's chest, Creed climbed onto the day bed and laid his head on her back and stroked her hair.