Saturday, January 23, 2016

My Dilemma

My dilemma is do I go?

Or should I stay?

Do I go with Stacie?

Or by myself?

Do we stay at someplace swanky that I've always wanted to stay at like Ventana Canyon? Or La Paloma?

Or do I stay with my folks?

Or should I stay home?

In Port Angeles.


I. Don't. Know.

"Be you're own friend," my mental health therapist says to me.

"Be kind to yourself," she says.

I. Try. I really really try.

And I know I need a break.

But this cancer--I'm recovering!

And he's seizing.

And his voice.

And I's....

You have my heart, I's. You do. And you know.

Thank you for telling me you want my brown hair back.

I do, too.

And I will.

But right now, I need to make a different decision....

Do I fly into Phoenix?

Or Tucson?

Rent a car?


Oh! Yes! Desert Museum!

And Eegee's!



Delicious. Little bit of heaven.

In the desert.

What do I do........???

Tuesday, January 19, 2016

Different Seizure...?

Today, while Nathan was at Hapkido, he had something different happen while he seized.

He was working with one of the Level Two Girls* and he said something to her like "I need to go sit down" or "go get Mrs. Ventura" and she did (I'm a little fuzzy on that part--but that's not the important part....)

The important part is that he got off the mat, and Mrs. V had him sit down and he said that everything looked like it was on pogo sticks and that the lights were flashing like in the bedroom.

Mrs. V asked him if she was flashing like the light in the bedroom and he said yes.

She also asked him if she was jumping on a pogo stick and he said yes.

This is the jist of the conversation.

The important part is that Nathan observed, and verbalized, what he was experiencing during a seizure.

We've been trying to get him to communicate this to us for five years.

If he's having a lot of seizures during Hapkido, she'll have him sit down for a break and drink some water, and that's what happened today. But Mrs. V said that this had a different feel to it, and I trust her on that.

She called me after it happened; I was in with my mental health therapist and my ringer was off (I see her pretty much every week). I was able to get to Nathan about 25 minutes later (and yes, I'm dying a little inside going to the very dark "what if..." place...but I know it's not healthy, so I'm trying to not....).

This isn't the first time Nathan has seized during Hapkido; I mean, he seizes everyday, several times a day, and we're all just used to it and we keep moving forward with our day.

Pretty much every time I drop Nathan off, I give Mrs. V a quick update "he's had his meds, he has/hasn't eaten much, he's having a good/challenging day...." While he is in her classroom, she is his primary care giver during this hour. And, she knows him really well; I trust her when she tells me this time was different.

She said that Nathan and the Level Two Girl were working on a few basic techniques; there were no elevation changes for his brain to process. Nobody was throwing anybody around. There were no back break falls. was different.

After knowing Meghan Ventura for five years, I know the girl ain't gonna call me about my kid's seizures unless that shit is serious.

We tried to lay low this afternoon, but I had scheduled a play date for Isaac, with a friend of his from school (his mom came and we all hung out for about an hour). We learned that while it's fun to have friends over, having a play date after school isn't the best idea for our family.

This afternoon, both Randy and I have asked him questions about what happened at Hapkido:

"Was this seizure different?"

"When you seize, does it look like I'm on a pogo stick?"

"When you seize, does it look like the lights are going on and off?"

"Were you scared?"

"When you seize, can you hear me?"

"When you seize, can you see me?"

He answered yes to all of these.

So, I'm scared...and I'm stressed...and I'm worried.

Logically, I know the kid's been sick for over a week, and it could be related to that. I also know that a one time event doesn't indicate a pattern (thankful that I'm married to a mathematician; they look for patterns).

I also know that whenever Nathan's been sick, there is something that happens to his brain and it's like something clicks...he comprehends something better...he's able to communicate more varies. But there's a change in his brain. I've observed it. Randy's observed it. His preschool teacher observed it. It's challenging to explain...but it's real.

Maybe this sickness that he's dealing with right now is ending and that he is going to be able to tell us a little more about what's going on in his brain.

*Level Two Girls: a great group of many sisters and cousins who also take homeschool Hapkido. N refers to them as the Level Two Girls because when he started homeschool Hapkido, he was in the 10 am class (what he called Level One) and the girls were in the 11 am class (what he called Level Two). And everyone in the homeschool Hapkido class knows what he's talking about; we just roll with it.

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.'s also been harder than I needed it to be. Or maybe I thought it would be easier...clean 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.

Sunday, January 10, 2016

Randy's Voice

For the last six years, Randy's voice has been fading.

He sounds a little like Rod Stewart. But without the British accent. Or the hair.

Or a Sunday morning DJ. Raspy. Dry. Hoarse.

We know about when and how it happened.

Nathan was 3 and Isaac was about 6 months old, Randy was reading a story to them on the couch. Randy is an amazing story teller. He throws his voice for each character. He remembers the voices for each character as the book progresses. He remembers each voice from each book. And we have a LOT of children's books.

Randy is a pretty amazing man. And he's incredibly smart. He's a mathematician for crying out loud! He doesn't call himself a mathematician. But I do. He can math the shit out of anything. Effin' smart, yo.

So, he threw his voice for whatever story he was reading, and it didn't really come back. But it was autumn, school had just started, and we brushed it off as maybe he was getting a cold, because all teachers get a cold at the start of the school year. I think it's written into our contracts.

Then we started having big time challenges with Nathan. He was seizing, but we didn't know that's what it was at the time; his eyes were flitting back and forth for 1-2 seconds, hundreds of times each day.

To add to it, I was going through a serious post-partum depression. Isaac was a really REALLY hard baby. Screamed bloody murder. Couldn't get him to calm down for anything. I remember sitting in the front bathroom, which doubles as our laundry room, with the dryer going, holding him and rubbing his back, while I sat bouncing on an exercise ball trying to calm him, shushing, singing, screaming (that doesn't work, just FYI). I've been in touch with some pretty deep dark emotions...all while holding an infant. No wonder the kid is intense.....

And Nathan kept screaming and Isaac kept crying and...Nathan...and Isaac and Nathan and Isaac andNathanandIsaacandnathanandisaacandnathanandisaacand...........

Our lives became focused even more intently on the boys, specifically on Nathan, and managing his medications and medical appointments. He was diagnosed with seizure disorder in October 2010; he had just turned 4 about 3 weeks before he was diagnosed. Isaac was about 18 months old and while he was no longer screaming, and I was coming out of my depression, he was--and is--so smart it was--and is--kinda scary (in a good way--think mathematician smart)

Our own stuff took a back seat, big time.

Each fall, at the start of the school year, Randy would get a cold, like most teachers do. And his voice stayed raspy.

Then came the autism diagnosis for Nathan, when he was 6, and our lives changed in the fact that we needed more information on how to best help our son. Change from a private school to the public school system. Assessments. Paperwork. Appointments. Meetings. Trips to Seattle. Children's Hospital. Autism Center. Hotels. Money. More stress. Change medications. Keep records. Doctors appointments. Pediatric Neurologists. EEG's. A sleep study. Tonsils removed. Change meds again. And again. And again.....and again....and still he seizes.

Or stuff got pushed even further back. And it's what happens when you're a parent, especially when you're a parent of a special needs kiddo.

Fast forward to about a year ago, Randy went to the best Ear, Nose, and Throat doc on the Olympic Peninsula, which happens to be a 90-minute drive south and east of us. Not an easy task to carve out 3 hours of travel for a 30-minute doctor's appointment. Really....going, getting seen and then getting home takes an entire day. Because while the drive is beautiful, it's also on a, mostly, 2-lane country road. The closest interstate is a 2 hour drive east; we live in the sticks.

The ENT in Poulsbo said that Randy had acid reflux and put him on a double dose of one medication in the morning and a double dose of another medication at night. It helped a little bit. But his voice wasn't back.

In July, the ENT ordered allergy testing for Randy. Turns out my husband is allergic everything except dogs, horses, and the American cockroach. Not kidding. So he started allergy medication, that the Poulsbo ENT makes especially for him. It's to help boost his immune system so that he suffers less. I'm good with that. Suffering less is a good thing.

When he went back in October for follow-up, they basically said, "well, everything looks ok, see you in 6 months." (I envision them patting him on the back on his way out the door...Randy said it wasn't quite like that....)

But that's when I reached my limit.

No. That's the wrong answer. You don't get to say that to a man who came to you for help with his voice.

The correct answer is "you know, I think we have reached the limit of what we can do for you. I think it's time to go see another ENT in Seattle. Here's a referral."

But they didn't say that. Not cool, you guys. Not. Cool.

We were able to get him in to Swedish Hospital, which is the best hospital around. He went over and saw the Lady ENT the Monday before Thanksgiving; she specializes in voices and works closely with a Speech Therapist. The Lady ENT said, basically, that Randy has been using his false vocal cords, and not his true vocal cords. He also has a nodule on his vocal cords that needs to be removed.

I didn't even KNOW we have false vocal cords...I didn't do too well in Anatomy and Physiology...because I took it in summer school the summer Randy and I started dating. Whoops! Not my best idea; but it worked out.

While I wasn't able to go to Seattle for this appointment, I was able to participate via FaceTime--thank you technology! And the doc and her staff didn't bat an eye at me being there in the way I was. They asked Randy what his stress level at home is like...and he was like, "well, it's stressful, but not horrible." And, of course, I interjected and laid all our cards on the table. All of them. And I said, "Because of everything we've been through in the past 10 months, we're incredibly sensitive to cancer in our family. Is what you're looking at--the nodule--do you think that's cancer?" And she said she's pretty sure--like 98% sure--that it isn't...but she wants to remove it and send it to the lab just to be sure. She said this is a pretty common thing to see in people who use their voices professionally, like teachers and singers. And the nodule is like a scar on the vocal cords. Sometimes they go away on their own.

The Lady ENT ordered Randy to go to speech therapy once a week, which he's been doing for the past 2 months. He has homework and is doing his assigned exercises regularly. His voice has improved, but it's not totally back yet. The best medicine is to reduce stress and rest your voice.

Which is kinda funny...reduce your voice....but kinda not funny......

Last week he went a massage therapist. But not just any massage therapist. He saw Jen. And Jen is a badass. I know her through Hapkido. She runs Spartan Races for fun. I've run one with her. One. And she runs them at least once or twice a year. She's a Cross-Fit instructor. She is a very strong woman, who I very much admire. And she's our massage therapist. She will rip you in half, pay her well, and then you'll ask for more. Because it's all good stuff.

Anyway, so the current hypothesis is that the muscles in Randy's back, neck, and throat are causing the vocal cords to be frozen. He is scheduled to see Jen once a week.

Today, Randy left for Seattle. He's spending the night with our good friend Jeff, who teaches both physics and astronomy at one (or two?) of the community colleges in the greater Seattle area. He's also working on his PhD in physics; smart dude. Typically when they're together they solve all the world's math and physics issues. Not really. They figure out new and exciting ways to engage their students in the hard sciences. And they're really pretty clever. I totally steal ideas from them; but I give them credit because I don't want to plagiarize their brilliance.

Tomorrow morning at 8:30 am, Randy sees the Lady ENT. Just like they have at other ENT appointments, they'll numb the inside of his nose and down his throat. Then they stick a tube with a camera on the end up his nose and down into his throat. If the nodule is there, then tomorrow will be his pre-op appointment. Surgery is scheduled for Friday January 22nd (time unknown). If the nodule is not there, then he doesn't have to have surgery.

I don't know if I'll be able to participate in the appointment. Like all things in life, it depends.

This morning, Nathan called me into the bathroom, and it was one of those urgent "MOOOOOOMMMMMMM!!!!!" calls. He threw up. He doesn't have a fever. But still. The kid is sick. His eyes are sunken in. He's got dark circles under them. His face is pale. He parked his fanny on the couch and didn't get up except to take a bath and pee a couple of times. He ate a couple of times...white rice; some applesauce. I was able to get his meds in him, and they stayed down. It is always ALWAYS a concern when he's sick. He typically seizes more when he's sick; today wasn't too bad. We'll see what tomorrow holds for him.

The TV was on all day. All. Freaking. Day. He even fell asleep on the couch during his favorite TV show (Garfield).

Isaac took a bath too; he was complaining of a headache towards bedtime. I told him that it was because he watched TV all day. But he insisted I take his temperature; he didn't have a temp.

I told them that if Nathan is like he is today, then we will likely stay home tomorrow, too. But we won't have the TV on all day. We can read and play checkers. We can play Legos. If Isaac misses a day of school, it's not a huge issue; he's doing fine academically and I'm not worried about him. I know his teacher will understand and support my decision. I'll try to get him to school, depends.....

My biggest concern is that the nodule will still be on Randy's vocal cords and that surgery will have to happen. Because if it does, then that means he cannot talk for 10 days after the surgery.

Ten Days.

January 22 through February 1.

My hope for tomorrow is that the nodule is gone from Randy's vocal cords, that Nathan feels better, that Isaac is able to go to school, and that nobody else in my home gets the crud.

I drank my sleepy time tea. I'm going back to my room to medicate and do some restorative yoga. I hope a restful sleep comes soon.

Friday, January 8, 2016

Changing a Norm

I'm working on changing a norm.

I've done it before, when I was the Tobacco Prevention Queen.

I mean, Tobacco Prevention and Control Specialist for Clallam County Health and Human Services. Basically, the State of Washington had a shitload of money from the Master Settlement Agreement, had an effective statewide program that kicked ass, and we passed I-901, which became RCW 70.160 and it prohibits smoking within 25 feet of a door, window that opens, or air intake system. So, since December 1, 2005, we've had this law in Washington that protects the health of the people from the known carcinogen secondhand smoke (SHS).

Badassery at it's finest.

Approved by the will of the people, who passed the Initiative in all 39 counties. Huge win for Public Health. Huge win for the Tobacco Prevention and Control Programs. Huge win for kids--because, really, it's all about the children. They don't have to walk through smoke. Nasty. The reason kids are more susceptible to the effects of SHS is because their respiration rates are faster than an adults. So, the faster you breathe, the more likely you are to develop negative health effects, like asthma, bronchitis, and other respiratory ailments.

You can spin anything "about the children"......

So...about my children...........

Wii. I hate the fucking Nintendo Wii.

Don't get me wrong, I think there's a time and a place for video games.

Especially when I'm kicking ass in Super Mario Bros. 

Going Old School, yo. 

But seriously, I'm tired of being plugged in.
Ironic for an on-line teacher.....

I'm tired of the boys being plugged in.
I need to work...can you guys occupy yourselves for a bit, please...??
I'm so fucking tired and stressed and need a break.... together....!
Be a team....!
YES! Defeat Vader!
Look out for the snakes, Indy! 
Great job there, Luke!
Innnndyyyyy!!!!! The torch is going out.....!!!! 

I'm tired of the fights.
You have five more minutes....
I know you've been playing for an hour....
It's time to be done. 
Save the game or the consequence it the Wii gets turned off....
If you save the game, you can start at this spot the next time you play....
I don't know if you'll play tomorrow.....

The meltdowns.
If you were to just fucking eat....
You have to fucking eat.  
I know you said you ate....
But the goddamned goldfish crackers are not a strong food....
And neither is the white cheddar popcorn....
I know Grannma says "I don't care what you eat, just eat something!" And for the most part that's true. But you're not gonna live on goldfish and white cheddar popcorn. Eat a goddamned apple and peanut butter for fuck's sake!

The tension.
Tight muscles....
Randy's voice...
His neck...
His back....
The speech therapist said his voice will come back if we can reduce the stress.... 
My breast still aches...the doc says it probably always will.... 
My left hip and low back still hurts. My pelvis is locked up.

The stress.
Reduce the stress...
Give them a lesson!
Teach the boys the difference between distress and eustress.... 
Goddamnit I'm brilliant!
Distress is bad stress, like fighting over the Wii.
Eustress is good stress, like....
Who can give me an example of a eustress?
I: going to school...?
Yes! Because going to school is fun, but it can be a little stressful, too, in a good get to see your get to get to play.

It's distressful for me when I have to spoon feed you your yogurt while you are in the tub. You're nine. You need to feed yourself. Be responsible. You want to play Wii? Be. Responsible.  
A eustress is when you're able to feed yourself, flush as soon as the poop comes out, don't clog the toilet, and you wipe your own ass. And can you start washing your own hair and body while you're at it. Why are you crying? The bottle says its TEAR FREE shampoo and body wash!!!! Fuck you autism. Fuck you developmental delays. Fuck you, too, epilepsy. Just, while I'm here, you know. Fuck. You. Brain. Disorders. 

That the fucking Nintendo Wii creates.
What can we do instead of video games...?
I: Go to zipline park!
N: Watch a show!
Me: Great ideas! Nathan, what can we do besides watch TV? 
Take a bath....
Read a book....
Have faith in yourself, Anderson....
Have hope that you will change the culture in your own home....
Do this peacefully.....
Be loving.....
Set your intention...
They are only children....
It's like pushing rope....
And pulling a bulldozer....

Be responsible.
Earn the screen time.
Earn the Wii.
Earn the privilege.

Just please stop the yelling....the fighting...the being mean and pushing buttons just to see what will happen. Because Mommy and Daddy are fried. We're chicken fried steak with a side of French fries. And deep fried ice cream for dessert. 

But we're doing the best we change the norm.