Birthday Eve

"Mom, those are bows. Not giant flies," he said to me as he drew his last picture of age 7.

Tomorrow he's 8!

How do you do this, child? Because drawing isn't my area of expertise. But you, son, you are talented.

 "I can tell," I say. "You've really been practicing a lot. How's the new mechanical pencil?"

"It's pretty cool. Thanks, Mom."

He found an orange mechanical pencil the other day after school, as we walked across the parking lot. As usual, we were the last to leave. The sun was bright and warm, but the wind was whipping in off the straight, blowing at a minimum of 20 mph, but gusting much higher. 

I know because I could feel the wind blow in my hair. Don't take that for granted. There was a time that my hair used to blow in the wind and I'd feel it all the time and I'd get pissed when it whipped me in the eye because that shit hurts! I'd be trying to get a goddamn hair tie or a scruncci or a whateverthefuck I could get my hands on and in my hair and had a messy bun before there was such a thing. At this point in life, I don't have the time or energy or patience to let my hair grow in. I don't know if I'll ever grow it out again. Cancer has a way of slapping you in the face with a feeling of deep uncertainty.

So he found a bright orange, mechanical pencil, with a 0.5mm lead. I keep telling him there are benefits of having awareness. Of seeing details. Of being quick and observant. Of being short, because if you're lower to the ground you can see things on the ground. How amazing his brain is. How different. The differences between the two of them. And of course there was an issue with the pencil as soon as we got to the car.

Because also as usual, his older brother was trailing behind us, and every few steps I'd have to stop and yell a variation of "hurry-up-come-on-let's-go" and then he'd yell "MOM! Parenting's like pushing rope!"

Yes. Yes it is. He gets that from me. The humor. That's all me.

So, the little dude is gonna be 8 tomorrow! Sweet Jesus, how time flies.

Unless you're in my family. Then it drags like a motherfucker. Major, life-altering, traumatic, health-related events will do that to a person. More than I ever anticipated. More than I ever studied. Nothing can prepare a person for any of it. What is the lesson? I try to be easy on myself. "Do. Or do not. There is no try."

Yes. Exactly. Stop trying so hard. Do. I express myself. I teach. Maybe I need more yoga. And more sex. And walking. But not walking and sex at the same time. Humor. Gotta have humor. I let the good in where I can.

I bumped into a friend today, when my older son and I were out running errands, including a Lego run, where he purchased a gift for his younger brother with his own money (what?!), as well as a quick look for 0.5mm lead that I couldn't find so I got a 2 pack of mechanical 0.7mm lead, and the pencils were green and blue, which is a major win because each child gets his favorite color. We also did a grocery run, a post office run, a pharmacy run, and Swain's. Because they have everything. Including one of the Ducks. 

Yes, you absolutely can have your picture taken with the duck.

We visited for a few minutes, and then my friend kinda summed it up when he said, "Man, your family just has a lot of bad luck."

Because that's one way to look at it.
 
And I said, "Yeah, that's one way to look at it. But we keep moving forward." Because, really, what else can you say? And, what else can you do?

And my son said to our friend, "Wow you've got a lot of popcorn!"

Because Swain's has popcorn. Obviously. They have everything.

And, no shit, this dude had like 8 bags of Swain's popcorn, stuffed into two plastic bags. And he reached into one of the plastic bags and gave a bag to my son, and offered one to me, which I politely declined. I have some self-control. Not much, but some. 

Anyway, self-control. Super important for 8-year-olds to learn. Hopefully this year will be joyous for this child. Because when I look at him and what he's been through, he's got a shit ton of life that's happened to him.

My heart hurts for him because his normal is high stress. He's a child who has trauma. And I know what the research says about a high stress environment on a developing brain. And it terrifies me for him. So I don't read the statistics. I did when my older son was diagnosed six years ago with epilepsy, and I know I'm one click away from going down a very deep dark rabbit hole. And you don't bloody your fingernails crawling out of the epilepsy rabbit hole to be thrown into the autism rabbit hole and the breast cancer rabbit hole and the tonsil cancer rabbit hole, just to voluntarily throw yourself into the negative health implications of trauma and stress on the developing brain rabbit hole.

So, my beautiful boy....

My fun-loving, clever, quick-witted, athletically talented, super-smart, artistically driven, drama-king, flirtatious, brave and courageous, mathematician, who is full of kindness and love....

May this year's trip around the sun grant your wishes and bring you joy. May you find wonder and excitement in each day. May you continue to hug me and your dad. And tell me you love me. Because I love you, too. 

6 weeks old; hiding out in the bathroom from his brother

All my love always. Lots of love and hugs and kisses.
Love,
Mom
xoxoxoxoxo

Swallowing Pills

My older son was diagnosed with seizure disorder when he was four years old.

When he was first diagnosed, the pediatric neurologist immediately put him on a drug to control the seizures, which is called Depokote, and is known to cause liver problems. Possibly. So we had to have him go to our local doctor's office, get his blood drawn every three months to monitor not only the level of medication in his blood, but to make sure his liver was functioning properly. Then our doc's office would fax the lab results to the pediatric neurologist, and I'd pick up a hard copy, just in case, and because I'm that mom, before we'd go to the children's hospital in Tacoma for the appointment with the pediatric neurologist. I'm thankful our family physician supported us doing this, because nobody's got time to drive 2-1/2 hours in one direction for a simple blood draw.

We had to medicate our son twice each day. So, we mixed that shit up in ice cream.

Because, what 4-year-old is going to say no to ice cream twice a day?

Rigth?!

When he was six, our son was diagnosed with autism spectrum disorder. Yes, he's vaccinated. No, his vaccines didn't cause his autism. And if you're going to argue, then please stop reading right now. And fuck off. Because that's not the point of this post.

Also, all that shit was proven to be falsified.
 
Anyway, the point is: medication.

Over the past six-and-a-half years, my husband and I have become quite skilled at breaking pills, crushing pills, mixing meds, tracking side effects of the now seven different pharmaceuticals, along with various combinations of pills, which is known as a cocktail.

Most of the medications we've tried to keep our son's seizures to a minimum have come in the forms of pills, capsules, or liquids. One medication we tried came in either a liquid or a gel cap. Based upon the fact that our son couldn't swallow pills, we chose the liquid, since, at the time, our child wasn't really old enough to understand. And, going with our new pediatric neurologist's advice, who said it is really difficult to get the gel outta the gel cap.... Yup. We chose liquid.

Which was brilliant until our son decided to not drink it.

So I called Seattle Children's Neuro...and we got the gel caps. And lemme just say, it really is a fuckin' mess to get gel out of a gel cap.

Even if you use a really really really sharp quilting needle.

On the upside, we switched meds, since we never were able to effectively use that medication because we couldn't get it in him.

No, I don't remember the name of the medication. Sorry. Yes, it's in the attic somewhere in a box with all the other medical records. We've tried so many different meds to control seizures...and really...when your child's pediatric neurologist, who you know cares about your child and your family says, "Well...your son didn't really read the book on how to most effectively have epilepsy" and "he has a rare form of epilepsy called Lennox-Gastaut Syndrome" and "he's not likely to out grow his seizures"...no matter who you are, and how optimistic you are, you start to wonder if he'll ever be able to do certain things...like drive...or take a shower alone...or swallow the pills his brain depends on...so that his brain stays on and he doesn't loose consciousness for 2, or 3, or even 4 or 5 seconds...10 or 20 or 50 times each day.

He's had more than 50 seizures a day. When he was little, and before we knew what we were dealing with...he'd have hundreds of 1-3 second mini seizures. Hundreds. Where his eyes would flit back and forth. He'd sway, like a tree in the wind. But I didn't know. I didn't know he was seizing..... But that's his epilepsy. 

An EEG confirmed it when he was only four.

But now he's 10-1/2.

And can swallow pills.

No shit!

His dad and I are beyond excited! And we are incredibly thankful to his Special Education teacher for teaching him. She's quite aware of the fact that my son takes meds, and what they are for.

He is currently on three different medications: two are for seizure control, and he takes each of those twice a day. One is for sleep, because he literally cannot stop his brain from thinking and talking and doing. And, when you are a person living with epilepsy, regular sleep is vital because if he doesn't sleep, he seizes more, and that's typical in people who have seizures. If he gets adequate sleep, like 11 hours a night, then he seizes less. He requires that much sleep because he seizes. It's a total chicken-or-egg situation.

And he's tired a lot because his brain works harder than mine to get through the day.

But he's swallowing pills!

No more mixing them in apple sauce. Or pudding. Or ice cream.

I mean, what 10-1/2 year old wants to eat medicine flavored anything?

Right?

And so I have a little hope.

Because his pediatric neurologist, who really does know his shit, said that most kids don't swallow pills till middle school, because they see other kids doing it and they feel a little peer pressure.

So, tomorrow, I'm calling Seattle and letting them know. And asking for a new 'script for gel caps.

They earned it!

We had ice cream for lunch! They earned it! So proud of my guys!

Honestly, I'm also proud of me. I'm taking the advice my therapist gave me years ago, and recognizing what I did. 

I loaded them up everyday. I drove them to the pool everyday. I worked with them as a team. I created a happy environment for us. 

So I had ice cream, too! 

Ice Cream for Lunch

I'm open to that.

Ice cream for lunch.

But here's the deal: we're going to the pool, for swimming lessons that you said you wanted to do each day of the week for spring break.

And we are to arrive on time.

All five days. 

Yes. It's a class. You're having a lesson. Every.single.day. For thirty minutes.

It's gonna cost me and Daddy 50 dollars to get this done. Which, really is a song. No, Nathan. It's an expression. Please, Isaac, yes, I'm looking into drama camp. But we're talking about swimming. Pay attention. 

Because I'm totally down for taking you guys to the pool every day for a lesson if you guys are down for it.

But here's the deal: if you choose to not go, it will cost you five dollars per class. Right. You pay me and Dad five dollars. Per class. Yes. Just like Hapkido, which is actually eight dollars per class. So, that's why swimming is a song, because it's less expensive. It's just as important. Yes, Nathan, parenting is like pushing rope.

Got it? Five dollars if you miss. Unless you're sick, then I'll cover the cost of your class. Right. Five dollars is a lot of money. So we want to be sure to get there on time and swim and listen to the teacher. Right?

Yup. That's a lot of Abby poop to pick up. I'm really thankful we have a big backyard so that we don't have to pick up Abby poop a lot. Yup. Everyone poops. And she's a big dog, so she makes big poops.

And what's awesome is that when you feed her, she goes outside and makes a bunch of poops and then you get to pick it up and earn ten cents per poop. So, really, when you feed the dog, it's like you're guaranteeing yourself some money. It's an awesome return on your investment.

But let's talk more about swimming. Let's make a social story so that Nathan's autism doesn't get too big and he gets overwhelmed and all hell will break loose and then nobody will be going anywhere, ever.

So, we sat down and created a social story in order to try our best and be successful. Here's what we came up with.

Isaac, my perpetually planning child, I don't know where we'll go for lunch on Friday. Let's figure it out as it gets closer. I don't know if we'll go to Jimmy John's, Nathan. I thought you wanted to go there when you earned your next belt promotion.

Oh! I know! Let's take one day at a time and see how we're feeling. I mean, you guys are on spring break, which is a vacation from being at school, so since we're on vacation, maybe we'll have ice cream for lunch!

Yes. I know your heads just exploded because I said we'd have ice cream for lunch. Yes. I'm seriously open to that. But here's the deal: we've got to follow the social story, and most importantly, we all need to earn five check marks.