I am eating a piece of cake with Anne Frank's face on it. There really is something kind of wrong with that.
Steve is working on putting the windows up on his Mom and Dad's deck next door, so they have a way to be outside more even when it's bad cold outside. We all need a little extra daylight during the winter months! It's been a fair amount of work, because his handy man disappeared and isn't returning his calls, so he's been doing it himself. The bad news is, you need a good handy man. The good news is, Steve built houses himself anyway--he can handle the work, he just doesn't feel like it. But at least he's capable of it, and in this case he'll know it was done the way he wanted it done in the first place.
These weather forecasters...yesterday it was originally supposed to rain all day. It didn't. Sunday was supposed to be winds over 50 mph. It isn't. It's fine. We could have flown either day. But no, we had other plans because the weather was supposed to be bad anyway. And then these same people want to tell me all about how this entire winter season is going to go. They can't even get SATURDAY right, and they want to tell me about the weather from now until March? We'll see what Monday--and March--brings when it gets here.
Kaylee's still got all A's except for a B+ in Social Studies. She has until mid-December to bring it back up, which should be doable. And not let anything else drop, which is harder. She's going to school today to help them clean up after the play. It's a mandatory gig, but she'll enjoy it anyway, just because being around her friends and doing things always winds her up. She's more extrovert than introvert in that regard.
Speaking of Kaylee, I have to say, I'm still glad for her growing up years. She gets along with just about everybody. The "cool kids" like her fine, but she doesn't really hang out with them. The "smart kids" like her. The "acting club" kids, the "quiet kids"...she doesn't have any enemies. She has one boy she doesn't like because of how he treats everyone, and a girl she says is mean but who doesn't bother her any, but in general she gets along just fine with just about everybody. I am doubtful she'll ever know what a gift that is.
SMA has been a bit on my mind lately. Recently a 13-year-old boy named Colin passed away. He was in his car with his family, his older brother with SMA, two parents, and at least one nurse. They were out on an excursion, which they do all the time, and he plugged, and crashed, and died, right there while his family tried to save him, as they had done scores of times before, and couldn't. They just buried him this week. I've known him since before he was born, when they found out he had SMA too. His brother shares Kaylee's birthday (three years older). Another little girl with SMA is 3 months older than Kaylee, so she's 13 right now too. She is profoundly weak, and is cared for around the clock by her mom, in her room at home. Her mountain to climb, her fear, is being able to lie with her head turned to the right. She chokes sometimes when her head is that way, so it scares her, and she has to get the courage to let her mom position her that way for her own good. Her mom has to do emergency trach change-outs fairly often...two in a row the other day. The mom has to unplug her from the vent, pull out the trach tube from the hole in her throat, replace the piece that goes into the hole in her throat, suction and bag her, and reconnect her to the vent, and fast. If her mom didn't do that, the girl would die right then and there. They do it all the time. Oxygen levels dropping, turning blue, choking, emergency medicine in a little girl's bedroom, and it's common-place. My 13 year old girl is going to plays and tennis and working on her straight As, and that mom hasn't left her daughter's room for more than a few minutes at a time in years. She can't even shower easily. The little girl can't talk, mostly communicates with noises and facial expressions. But do you know what these parents say about all this? They search online for the fun things to do. They dress up the kids for holidays, and find ways that they can participate even if they can't leave the room. They joke around amongst themselves. They reach out and help other families who are struggling and "really" have it rough, unlike them. They improvise when they can't get the supplies they need. They fight, but they don't complain, at least not in public. They always express their gratitude, see the humor in the little things. This is a perspective I need hit with now and then, and there are a lot of other people who could use being hit with it too. Life isn't about being mad because you got the wrong size turkey for the holidays or the cleaning lady didn't come and now you'll have a messy house or have to clean it yourself. Life is being thankful my daughter can be a smart aleck and play a Jewish girl from 1942 on stage and that I have to get on her to pick up her own stuff...and she can. We're healthy, all of us, and happy, and have a safe home to come back to, safe in all the ways you can think of. The mom of the other 13 year old girl always counts her blessings in public too. The one thing she doesn't say, but I know drifts through her mind sometimes, is that there are only a few of the generation of kids who made it to 13 still with us today, and that if Colin could be fine one moment and gone the next, so could her daughter. It's her biggest fear, the one she won't give words to, because she doesn't want to give it any substance. This I know, without question. So for her, and Colin, and a hundred other children you haven't met but I have, one way or another, be thankful, and grateful, and aware of the gifts you have been given, even knowing you have your own crosses to bear.
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