First off, we’re thinking about all of our friends on the East Coast who weathered Hurricane Sandy earlier this week. The Washington DC area (from where we recently moved) went largely unscathed but New York City (where we lived before that) was of course devastated. As the storm approached on Sunday we couldn’t help but think of families of kids with MTM, as well as other medically fragile people who rely on electricity for survival, in it’s path. Fortunately, it appears that folks we know only lost power temporarily. Still, with Seattle on a major fault line and extreme weather on the increase, the storm helped us conclude that it’s time to get a gas generator.
Lucas has had his ups and downs since we last wrote. He got sick last week and had a few harrowing incidents at school that forced him skip out for two sick days (his first since school started in September.) He actually bounced back pretty quick and was in such a good mood during the days that he played hooky that we almost questioned keeping him home. But having multiple incidents where nurses had to do emergency trach changes because Lucas appeared to be having trouble breathing is something to take seriously. Last Tuesday the bus driver actually had to pull over on the return trip so that Lucas’s nurse could suction repeatedly, change his trach, and eventually take him out of his chair and lay him on the floor of the bus. She considered calling 911 but instead got Krista to drive over and pick them up. By the time he got home Lucas was in a grand mood. The same can not be said for his nurse.
Such incidents have become rare with Lucas, but what happened last week was a good reminder to all of us that he’s still very fragile. We push him a lot harder these days, and pre-school can really take a toll on the little guy sometimes. There are days when he falls asleep on the bus ride home, or looks totally out of it by the time he gets off the bus lift. Meanwhile, he continues to struggle with his power chair, having small breakthroughs some days but more often either refusing to drive it or not getting very far when he does.
But those are the challenges, which help to set the stage for some recent triumphs. First, we took Lucas to the Cat in the Hat play at the Children’s Theater on Saturday, and were joined by a bunch of friends and their kids. Being one of Dr. Seuss’s biggest fans, Lucas of course loved the play. For much of it he sat up chanting “the Cat in the Hat!!” and “What’s that Cat in the Hat doin’ now?” and afterwards as we rolled around the Seattle Center on a drizzly day, he grasped the glossy program like his life depended on it. Then he had a melt down and we had to rush back to the van… but what was really special was doing an outing with friends and their typically developing kids (which is to say kids that don’t have disabilities) and have everyone enjoy themselves like it’s no big deal.
The next day was a special experience of a whole different sort. We went to a Halloween themed birthday party in Bellevue in which more than half the kids had physical disabilities. There were wheelchairs, walkers, standers, and other contraption rolling all around the big community center, and Lucas was not alone with his tracheostomy or suction machine. The parents of Julie Grace – who’s birthday it was and who uses a wheelchair herself as well as eye-recognition software to communicate – had done a great job of figuring out some games that everyone could participate in, and Lucas especially enjoyed taking tuns throwing a blinking bouncing ball with another little boy. We met some great parents who seem to be navigating the tough waters of special needs with determination and creativity, and exchanged notes on augmentative communication devices, special education challenges… and even got some insider information about new developments at the Woodland Park Zoo’s penguin exhibit.
Finally, yesterday was Halloween and Lucas had a blast. School was out for the day but he wore his costume to music class in the afternoon and then was joined by Nonna and Papa for some trick or treat fun at our house. We handed out candy for a couple hours and set up the couch near the front door so Lucas could check out all the cool costumes… and show off his own. Some neighbors – goaded on by Nonna – even came over to sing “The Monster Mash” (newly arrived on Lucas’s top 10 list). Though he didn’t get to join in the candy fun we also handed out stickers for kids who, like Lucas, found that to be more exciting than overindulging in sweets.
