Daniel was born with Cornelia de Lange syndrome. I've lived with Daniel my whole life (he is three years old than me) but I still don't know the easy, short answer to give someone who asks what, exactly, that means. I guess in many superficial ways, it's a lot like Down syndrome, in that there are varying degrees of severity and functionality out there, and everyone with CdLS is a little bit different. I think Daniel is relatively high-functioning, but he still has a lot of health problems.
One of these health problems is that he occasionally has seizures. He had them when he was a little kid, and then they disappeared for years and years. When Daniel was 18, he started having them again. Specifically, he started having them again while we were on vacation in Alaska.
It was about halfway through our trip and my family was eating lunch in a courtyard in downtown Anchorage. I was sitting on a low brick wall and Daniel was standing next to me. Suddenly, out of the corner of my eye, I saw the apple he had been eating drop to the ground and roll away. Then he dropped his umbrella. Then Daniel himself fell flat on the ground and had a grand mal seizure, right there in the middle of the courtyard.
Of course, we were all very distressed. Someone called 911, and an ambulance came to take Daniel to the hospital. As for those of us who didn't ride in the ambulance, a stranger came to our aid and gave us a ride to the hospital.
In case you've ever wondered what the emergency room in Anchorage looks like.
After a few hours of observation and tests, the doctors ended up giving Daniel some heavy anti-seizure medication and we were free to go. It must have been a difficult decision to make, but my parents decided to continue on with our trip.
So we hopped on a ferry and went to the Klondike Gold Rush town of Skagway. If you've ever seen White Fang and remember the gold miners climbing up that huge mountain, (the "golden staircase"), Skagway is not too far away from there. It's kind of a touristy town, but in a very fun and well done way. It's one of those places where wholesome Mormon youth interested in music and dance theater go for the summer to earn some money (see also: Disneyworld). The main boardwalk downtown was made up in Gold Rush style and there was a nightly musical show at an old-style theater, also featuring Gold Rush-era entertainment (and lots of those Mormon youth).
Before the show, there was a mock gambling tournament. Each ticket for the show also bought you a certain amount of fake money to gamble away at the various gaming tables in the lobby. It might seem like a strange activity for our family to attend, but the atmosphere was very light-hearted and friendly, so we all went.
It had only been a day or two since his seizure, and poor Daniel hardly knew what was going on. Not only had the seizure left him disoriented and confused, but he was suffering from the effects of taking massive doses of an anti-seizure medication totally new to his body. He was woozy, loopy, and not entirely "there." Still, he wandered around the gambling tables with my dad and played his fake money about as enthusiastically as could be expected.
The gambling tables closed just before the start of the evening show so that they could calculate who the winningest gambler was and present them a prize during intermission. When it came time to announce who that winner was, with a grand total of something like $350,000 in fake money from an evening's worth of gambling, it was Daniel! Somehow, exhausted, seizure-weary Daniel, in his medication-induced fog, managed to outplay every other gamer there and take home the grand prize.
They called him up onto the stage in front of everyone to present him with his prize. There was a choice of a few tiems, and Daniel chose an audio cassette tape of songs from the show. Here he is in his moment of glory with the star of the show, Soapy Smith.
And because no Flashback Friday would be complete without a picture of me in my awkward stage, here I am in front of a totem pole in Alaska (where is that shirt? I miss it!):
Next week: A) stories of sleepless nights, or B) getting chased by a bear at Girls' Camp. You decide.