Sunday, January 17, 2016
First Two Weeks of the New Year
We've had a pretty rough start to the New Year.
There have been good things, too. I got to go out to dinner that first weekend of the New Year with my good friend Wendy. On Sunday morning I got my shark tattoo.
But...it's also been harder than I needed it to be. Or maybe I thought it would be easier...clean slate...new year......
I need to get some shit out. That's what the blog is for, yo.
The first week was hard because we started back to school on January 4. That means Randy and Isaac were both out of the house, and that I was on the computer a lot, working with students and helping them navigate my online classroom. And this is more challenging for some folks than others; and some have never taken an online class before, so there's a lot of coaching and responding to emails. I have a reputation as being a responsive online teacher; I generally answer emails within 24 hours, except on weekends. And it's important that I stick to that. I love my job. I'm thankful that I get to teach and that I get to work from home.
Nathan did pretty well, considering he was dealing with the transition of Daddy and Brother being gone. He just had Dad home for 3 weeks and I's home for 2. So, it was kinda like this major change, so we talked about it. But transition is never easy in an autism home, no matter how much we prep him. And we can't tell him stuff too far in advance because he'll perseverate on it, it'll create anxiety, and he'll be a hot mess. To add to it, at the end of the first week, Nathan starting to get sick, but we didn't know it at the beginning of the week. Obviously. (He's feeling better, but not 100% just yet). And we did very little in the way of academics.
The good that happened during the first week was on Friday night because the Dance Troupe met. These women are freaking amazing. They welcome you with open arms, even if you haven't showered in a few days and you're mentally exhausted. One of my dearest friends has created a space that is very special, in a building on her property. So it's inside and we're warm. There's no nakedness by the light of the moon. Yet. And she's in the city limits. So...ya know...different laws. Us county folk are naked a lot.....heh.....
BUT, we danced. She put another awesome play list together and, since she's a teacher and dabbled in dance when she was a younger woman, she even creates movements for us to specific songs. And all the songs on the playlist that she created, which lasts a little more than an hour, were all female singers. Kicked. Ass. My friend puts a LOT of thought and planning into the music and the movements that we do.
This was the third time we've met. First Friday night of the month. Dance Troupe. And it was extra special because she wrote a poem for me and about me, which she made an audio recording and played for all of us when we were done dancing, and laying on the floor in shavasana, in the darkened room. There were about 8 of us there. And she did that because she was a bit concerned that if she were to read it in front of me, she'd break down. Not because it's bad. But because she loves me that much. And because she's a very loving, caring, giving, and kind person. And I love her very much. And she baked me a real chocolate cake, with NO avocado (she's been known to do sneaky stuff like that! She's a hippie.). And real whipped cream and raspberries. Delicious. So much Gratitude.
So then Nathan got sick on Sunday morning. He was in the bathroom and yelled "MOOOOMMMMM!!!!!" in that way when you know he's serious and something happened. Only once. But still, puke is puke. At least he made it to the toilet and I didn't have to clean anything up. For this I am thankful.
But the sickness added to the stress because that was the same day that Randy needed to get to Seattle. Our good friend Jeff put him up. Randy went to Seattle for an early Monday morning appointment to see the Lady ENT about his voice.
The second week of the New Year, Nathan was down for the count. No fever, which is fantastic, of course. But he didn't go to Speech Therapy on Monday, or Hapkido on Tuesday. He was able to go Thursday. He hasn't eaten much all week. And when I thought he was feeling better, he said he'd eat a yogurt with fresh cut strawberries, but then refused it. So frustrating. Today we were supposed to go get our hair cut, but I cancelled because I can feel I'm starting to get something too. And, for the second week, we did very little in the way of academics.
Although we are reading "James and the Giant Peach," so I really shouldn't beat myself up too badly. We'll watch the movie after we finish the book.
I kept Isaac home from school Monday, January 11th. Partly because Nathan was sick and to load him up and get him in the truck and drive to school and make it by 7:45 am in the freaking dark wasn't gonna happen. Yes I could've asked for help; I know several families who would've picked Isaac up on their way to school. But here's the thing: the main reason I kept I's home was because when you're day revolves around waiting with baited breath about whether your life's partner is going to have SURGERY with a LASER on his VOCAL CORDS, you want your family around you. So, let's be honest, Isaac stayed home to make my life easier.
And the good news is that Randy is NOT going to have vocal cord surgery on Friday January 25. Praise be. The Lady ENT said to continue with the Speech Therapy and the Massage Therapy. She said that Randy it still pushing his voice and that there is a nodule on each of his vocal cords, but that since he's showing improvement and feeling better, she wants to give him a chance to work on engaging his vocal cords on his own, with help from the therapists. If surgery happens, it'll be in June or July after we're out of school for the summer. It'll be less stressful for us as a family then. The Lady ENT rocks; she gets us.
In other good news, my Book Club met this past Wednesday night. And it is always--ALWAYS--good to see these women. We've been together for...5 years...I think...?? And as a group, we read 10 books a year. Some of us are book whores and read even more. I won't name names; other than me. I'm a book whore. Addict. Avid reader.... (See how I spun that--I'm trying to be positive....) This month we discussed The Martian. (It was a LOT of fun!) Next month we are discussing Paper Towns. (So far so good!)
And today, I put on my Wonder Woman socks, and my Wonder Woman underwear because I took my family to see Cirque Ziva. We had a great time! Both boys did really well, and we even stayed for the entire show. We ran into a lot of good friends and after the 2+ hour performance, there was a group of boys who played catch with a football while several of us grown ups stood around and talked about the awesome show we had just seen. It was cold and there were clear skies; it was gorgeous. It was a treat to watch my kids interact with their friends. It felt what I anticipate other "normal" families do. I've been waiting a long time for my family to do something like this.
Nathan was stressed before the show. I showed the boys videos of the Golden Dragon Acrobats on YouTube before we left. I baked chocolate chip cookies and we had some when we got back to the truck after the show. I tried to make it as positive a day as possible for them.
The thing is, I'm tired of saying "We can't do _____________ because of autism/epilepsy/cancer." And there are times that we will not be able to do things because medicating Nathan on time takes precedence over pretty much anything (because controlling the seizures is our MO). And, yes, the show today was at 2, and that's a time that works for us. I am thankful that the Juan de Fuca Foundation works so hard to get these amazing acts to come to Port Angeles. But I'm also thankful that I had the courage to say "I want to go see Cirque Ziva, and you 3 gentlemen are coming with me."
When we got home, the boys tried some of the moves they saw. Randy and I put our foot down about stacking chairs and doing handstands. That's the Boss Level. The boys are at Level One. Tonight at dinner, we talked about our favorite parts of the show: ALL OF IT! And the boys thanked me for taking them. And they said they had fun; I believe they did.
And while the last two weeks were pretty difficult, I know that tomorrow is a new day; I feel like we may have turned a corner today. While the Cirque Ziva show was pretty stimulating, my hope is that it doesn't have the same affect on Nathan that Star Wars: The Force Awakens did. My hope is that he doesn't have hundreds of seizures tomorrow.
Fingers crossed everyone sleeps well and limited seizure activity tomorrow. And that the boys make it to Level Two of their tryouts for Cirque Ziva.