Cold

I feel cold inside myself.

Empty. 

Darkness. 

A need to get warm. 

My body aches. 

Heating pad on my left knee, from a bicycle accident the summer before I turned 16. I was hit by a truck. It was light green with a white line down the side. 80's model Ford pickup truck.

Another one on my left hip and lower back. Possibly from that accident. Definitely from giving birth. 

Twice. 

Vaginally. 

With no meds. 

Twice. 

Fucking got ripped in half. 

Then in half again. 

That's quarters. 

I gotta get that app on the iPad so he can learn about counting change. And dollars. Especially before we go to Seattle on 3/3. Fuggin epilepsy. Goddamnedautism. 

Warm up. 

Gotta warm up. 

Cuppa hot chamomile tea with honey. 

Twice.

Three times.

Four? 

English muffin with raisins and cinnamon. And butter. Because I can. And I don't know how long I'll be able to. Lots of butter. Mmm hmmmm........

I don't dare eat this near him. He's tired. I'm tired. We're fighting. Still. He loathes the smell of cinnamon. Looses his mind when his brother has toast with cinnamon and sugar. A leftover food choice from Teacher Bob. Gratitude to you Teacher Bob. For reals. Because I's has some other comfort food choice besides goldfish. 

Return to sitting in the glider. 

Warming up. 

Feet up. With a third heating pad on them. Because I'm that freaking cold. Yes I have socks on. I'm a mom. I got it. Slippers too. I'm not too dumb. 

Phineas and Ferb marathon. 

He's chewing Pink Kitty's tail. Thank you Momma Teresa for the fabric so I could repair her tail. I'm looking forward to seeing you tomorrow. Prepping for the new track lights. 

I'm seeking warmth. Chasing the sun. 

He's coming back to the living. Meds were late this morning. He's still got yesterday's medical patches on his back. Transdermal medication delivery. There haven't been a lot of seizures, but there was a lot of action the past couple of days. 

Monopoly. 

Birthday party. 

Good stuff. But stressful none the less. Eustress.  

Oh, and as a reminder, Mrs. Anderson, you're recovering from chemo and radiation. 

Maybe going to kickboxing twice last week was too much too soon....? Maybe sustain frequency and decrease activity. Be easy on yourself, Doak.

Did I remember to take my meds the past couple of days? 

They say that for every dose of chemo, it takes a month to recover. That's a dozen treatments and a dozen months. A year. I stopped September 21st. It's barely been 5 months. 

Radiation. Twenty-two treatments. Or was it 21? Lynn the Rock Star Nurse could look it up. I'm struggling to recall the exact number. I know my last radiation treatment was on my 43rd birthday. November 19th. It's only been 3 months. 

I could log on to Epic and look up the number of treatments I had, but I'm tired. I don't want to be at the computer (thank you Blogger app). I don't want to grade. Or write those letters. Or send those emails. And make those phone calls. But I do. 

Be easy on yourself. You have labs on Wednesday. Hopefully the cancer is nowhere to be seen. Hopefully I'm not pregnant. I'm supposed to be sterile now. But Christ knows that's the last goddamned thing we need. Chemo throws a girl into menopause. My period may or may or come back. 

Coldness. 

Heaters on. 

Quilt. 

Hat. Beanie, really. Black. "I'm fighting cancer. What's your super power?" Written in a script. In silver glitter. With the double Wonder Woman W. Best skullcap ever. Thank you Momma Christine. 

Yoga pants. 

Long sleeves. 

Black Columbia fleece vest. 

Cold. 

I'm trying. 

The sun is peaking out. I'm thankful for the southern facing skylights. 

But it's colder than it looks outside.

The bird feeders are empty. 

The wind blows. 

More clouds....... 

I hear the wind chimes my uncle Chris bought for me when I was a young woman and had just turned 21. 

I need to see him. 

And my dad. 

And my mom. 

My bro. 

Meet his girl. 

Warm up.  

I'm trying. 

I'm overwhelmed. 

I cry a lot. 

I'm recovering. 

I'm trying to not be angry. 

When was the last time I medicated and practiced yoga? 

I'm dealing with a lot. 

And wondering when, and if, his voice will return. 

Reminding myself to eat, even though I don't feel like it.

Trying......

Trying......

Trying to move forward.

Being held hostage

It's like being held hostage. When he wakes up and he's in a bad mood.

He's hungry. Because he hardly ate the food that I made for dinner the night before. And it's a meal he's eaten countless times throughout his life.

He asked for applesauce this morning. But then refused to eat it.

The whole family suffers. Including the dog.

Because he didn't wake up on his own sleep cycle. For whatever reason. Most likely someone unintentionally made a noise and it disturbed him. He's normally a very deep sleeper.

He's angry because his brother goes to school but he doesn't. The whole morning is a transition. Autism and transitions don't work well together. 

We tell him he can go back to school, but he doesn't want to. I can't say I blame him, the classroom was not healthy  environment for him. 

But home is starting to have its own hazards. 

This morning he lost at the game of Sorry that he played with his brother. Instead of saying "good game bro" and shaking hands, which is what they usually do, he verbally and physically attacked his little brother.

Then me.

Then his father.

I've had enough, so I retaliated. Not my best move.

We go to Seattle on Thursday March 3 for an appointment at 8:45 am on March 4. We'll be seeing his pediatric neurologist. Managing medications. Planning. Do we need to adjust meds? Why won't he eat? He's not sick.

A dear friend said that Gandhi would conduct 7-day hunger strikes. And he lived. I mean he's dead now, but he survived the hunger strikes.

So....we'll see how long this goes.

I mean, as long as he's taking his anti-seizure meds, which are mixed into ice cream, twice a day (can't swallow pills).

And as long as he's drinking water.

Right?

Teaching independence and self-care and being responsible for yourself is hard stuff.

Growing pains are necessary.

So I can try to free myself and the rest of the hostages.

Years Ago

Twenty years ago last month, I met the man who would become my husband. He was my math teacher. I still remember the first time he walked in the room: jeans, t-shirt, flannel, long hair, baseball cap, black Nike high tops. He looked like he was 12-years old. But he owned the place. So freaking confident.

Ten years ago last month, I was 3 months pregnant with Nathan, puking my guts out at anytime of day or night, and loosing weight. I felt like I was a looser at being pregnant. Because seriously, who drops weight during pregnancy? All I wanted to eat was chewy fruity candy. Jelly beans. Starburst.

Last year in January, I was preparing to homeschool this same child, doing my best to help him hold on until the end of the school year. We didn't make it that far. 

Twenty years ago this month, I was in a College Algebra class that I knew if I didn't pass, I would not earn my Bachelor's of Science in Community Health Promotion. 

Ten years ago this month, I was feeling better in my pregnancy and was craving watermelon. I was also traveling to DC for a national conference, and I got to tell one of my dearest friends from college, Melanie, who lives in The District, that I was pregnant. That trip was the last time I flew, or left the State of Washington. 

This time last year, Nathan's last day was tomorrow: February 13th. We sent him out with a bang, the entire school was partying hard for Valentine's Day. Then we went to a birthday party for Dean. I didn't get him a gift. I bravely stopped at Safeway, with my children, after school, who were higher than kites on sugar. Why? Because I knew my girlfriend needed a gift more than Dean. So I picked up a bottle of her favorite wine and a bag of Ghirardelli's dark chocolate. I remember Nathan and Isaac wrestling on the ground in the checkout line. Seriously.

And on February 18th, I found a lump in my breast. I knew right away that whatever was in my breast wasn't good. I knew life as I as a woman, a wife, a mother, and a Health Educator would never be the same. My family was altered in ways, both food and bad, that I could never ever begin to imagine. 

The cancer diagnosis came on March 9th, two days before Randy's 47th birthday. I was 42 years old at the time. I was told I was too young to have this in my life. 

As if I could go back and make alterations to what I'd done. And I firmly believe that this feeling of wanting a time machine is universal among all cancer patients. 

I know a lot of mathematicians, and a couple of physicists. Thus far, no time machine has been invented. And if there really was, what would you go back and change? Would you go? And how far back would you go?

"...surfing my autistic kid."

That's what she said.

It was a recent status update on Facebook where she said she was thankful for her family, community learning to live life on a farm she's creating and "...surfing my autistic kid."*

Because that's exactly what it is.

Life sucks sometimes.

And sometimes the waves we're surfing are bigger than us we become overwhelmed.

I'm so sick of picking up the clothes and having to keep track of the doboks and the belts and start being responsible for yourselves! I wash everything and you need to hang up your clothes. Not me.

Jesus!

And I really don't care if you pick your nose! Everyone does! Yes, even that cute girl in your class! Just get.a.tissue. Please. For the love of all that is holy. Tissue, child. Get a tissue. I'd get you one myself, but I'm trying to teach you clowns to be independent. I'm not enabling your ass. Get. Up.

And DON'T wipe it on the loveseat. Don't wipe it on your blanket. Don't sit next to me on the loveseat, squished up in my space, picking your noses and leave me alone!

I need space.

Because the waves I'm surfing are 25 feet tall.

I'm no where near being in the tube. 

And my board was pulled out from under me last year.

And I'm trying my best to keep moving forward.

Because, really what the fuck else can I do?

Give up?

That's one hell of an example to set.

I'm trying my best to ride the wave I'm on. 

When I first met her, about 7 years ago, our kids were in the same preschool class.

We had some type of connection other than that though, we just couldn't quite put our finger on it. Other than we're both really good huggers.

It was more of a "I completely get you because your kid isn't within the range of normal stubborn. It's more intense. Because your child feels his/her emotions more strongly than the other kids seem to. And you're doing everything you can to hold on to your sanity and make it through till bed time" type of understanding between us.

And know we know why.

We surf our autistic kids.  

Learning new jargon and the myriad of acronyms that come with living on The Spectrum.

Trying to determine what the behavior is a product of. Too much sound? The feel of those pants? Trying to figure out if you should be frustrated with your child or their autism is a slippery slope.

Frustrated with the system. The meetings. The doctor's appointments. The travel. Because traveling is never ever easy with an autistic child. And really, the only place you can go for help is in Seattle, which is a long goddamned drive.

I said "autistic child" not "child living with autism" because sometimes, even us experienced autism parents see the autism before we see our child and not the other way around.

And it wrecks us every single time.

So you keep trying.

You paddle out, ever so gently, but with determination.

You try different waves to see if you can get your board back under your feet.

You try to balance.

And you keep falling.

Frustration overwhelms you and the wave drags you under.

And you get lost in the meltdown, too, and go right over the edge with your child, crying, kicking, screaming......

Wondering when you'll surface.



*I obtained permission from my friend before quoting her. 

Don't tell me

When I ask you how you're doing, don't tell me "Oh, we're OK. Just the usual stuff. It's nothing compared to what you are going through."

I ask you because I'm genuinely interested, not just making polite conversation. Well...ok...I'm kind of being polite. 

Also because I need to get out of my own head. There's a lot of shit running through my brain, and sometimes, I need a break from myself. So, hearing about your stuff helps me, even if only for a minute or two. 

It gives me the opportunity to think about something other than my breast cancer.

Or homeschooling a child on the spectrum. Or about his epilepsy. 

It gives me a chance to not worry about my husband's voice. 

Or about Isaac's neurotypical development. 

Just....As long as you don't tell me that I'm on a journey. Because, I'm not going anywhere. I haven't been anywhere.

Saying "...on a journey..." is not cute. It's trendy. Stop being trendy. It's not cute to say a person going through major health issues is on a journey. A journey is defined as "an act of traveling from one place to another." 

Aren't we all on a journey? Aren't we all on this planet together? Traveling through space? Honestly, when someone says "...on a journey..." to me, I can't help but think of that famous scene in Titanic when Leonardo DiCaprio is standing on the bow of the boat, holding his arms out, pretending to fly. "King of the world....!"

Remember what happened? That ship went DOWN! D-O-W-N! DOWN! DOWN! DOWN!!!!!

Journey my ass.......

OH! Wait! Right! A "spiritual journey"... where I'm supposed to discover who I am...and discover stuff about myself.

YES! I'm supposed to "become enlightened" which is "having or showing a rational, modern, and well-informed outlook."
 
Right. I know plenty about myself. I'm rational. I'm modern. And I'm pretty fucking well-informed about the diseases and disorders my family deals with on a daily basis, thank you very much. 

Enlightened: check.

I know I am strong. I know I'm a survivor. I know I have courage. I didn't need to go through having breast cancer to discover this shit. I've known it for years...decades........pretty much most of my life.

Because here's the deal: cancer, epilepsy, and autism suck.

They SUCK. 

We're not on a journey. Oh no! Not the Andersons!

We're on a Multifaceted Mission! A mission is defined as "any important task or duty that is assigned, allotted, or self-imposed." 

YES! I am on a mission to find a medication that works and completely stops my son's seizures. I am on a mission to recover from the Hell called Treatment my body went through in 2015. 

My husband is on a mission to loosen up his vocal cords. 

Isaac is on a mission to be a "normal" kid. And given that his "normal" is pretty intense...he's doing pretty darn good. 

Don't be on a passive journey. Be on a Multifaceted Zealous Mission! 

I'm not sitting back. I'm approaching this shit with some purpose! Some gusto!

Let's do this! Get out in front of it! Embrace it! Feel empowered! 

Set your intention.

Be bold.