Bad Joke Tuesday

So there's an insurance adjuster, a neurologist, a Russian sales manager, an optometrist, and an 18th century Austrian composer. No really, it's not a bad joke -that's my Tuesday. 

Hoping that the first few on the list lead to some answers. Answers such as 

Why is the toilet flooding the house? 

Should we give up and build an outhouse?

Why does my child keep having full body twitch fits and trouble walking?

Is it diagnosis A, B, or X? What test is next?

Has the computer system been fixed? Do I have a contract? 

Just another Tuesday... wishing I could add a magician and a chef to the list!

 

Distant Cousins Who Live Distantly

I often discuss how certain experiences can bring otherwise strangers together, sometimes closer than family. This is true of my military friends, now scattered around the world. We have a bond, a survival experience, that is unbreakable and incomprehensible to anyone that hasn't lived some thing similar.

My Autism family is much the same. We've been sent on a journey many will never understand, never have to walk. A journey that can sometimes feel lonely and out of our control. Finding those connections with other families on the same path, whether down the street or another country, can instantly make that weight of the journey lighter.

In seeking answers and support, Facebook is the go to gathering place, and thus I found myself in a group of moms from around the world facing my same daily struggles. After a few weeks I began noticing another mom frequently commenting, offering suggestions, that seemed to have children closer to the age of mine. Teens instead of toddlers. Then I realized we shared a maiden name, a name with an uncommon spelling.

And so I reached out to this woman three states away whom I'd never spoken directly to. We did searches, and found our connection beyond just Autism and the coincidence that we both have T-shirt businesses. Sixteen generations back, in a small village in England, our great-grandfathers were brothers.

Two years later we share a sarcastic sense of humor, cheer each other on during moments of chaos. We share triumphs and pains. We share a name, genetics, a history, and a journey. She's my distant cousin who lives distantly but helps daily . A reminder that life's adventure really is all relative.

Thirty One

There's a card game, called Thirty One. My husband loves it, but he never wins. It was one of the first things he taught me after we were married, even before my indoctrination into Star Wars. He didn't realize, and still somehow doesn't believe, that I'm great at card games. At least card games with face cards, Rook is a whole different story. 

It is a simple game, everyone only needs three cards. The goal is to have the total number equal Thirty One or have three of a kind. Nearly every hand he magically deals me the cards I need to win or the final card for my set is at the top of the draw pile. I notoriously continue to draw and discard without entering the cards into my hand just to let him have a few rounds to possibly gain a winning hand. But it rarely happens.

He just asked me to play and I suggested he play with the kids instead. So I'm listening as he teaches our 15 and 12 year old boys how to play. And our younger son is catching the loopholes in my husband's directions. Jokers are wild? Then I say this one is thirty one!

My poor husband... nearly twenty years and now I'm having to teach the kids how to let him win.

Where There is Water...

...there is usually even more water. If it is connected to a pipe, it has probably flooded my home. In the last five years we've enured water damage from leaking toilets (that have flooded the room below them), exterior faucets that have frozen and poured water inside, sinks, water heaters, air conditioning units, etc. 

We've seen everything from full spray from a faucet-less sink to a foot of standing water in the basement. From the ceiling crashing down from water weight to parts of a toilet dropping into our kitchen. 

We even had one home where not a single window was properly sealed so water poured in every time it rained... and we lived near Seattle, where it rains a lot.

For us, the sound of dripping is one of the first signs of Spring.

In high school Home Ec class, I was paired up with a group of other kids as a "family."  Our family spun a wheel and drew cards from a jar to determine our life's triumphs and disasters. Two guesses what type of disaster we drew several variations of... yep, floods. Come to think of it, I believe I took the class in Spring. 

In the Beginning

August 1974- July 1975

 

 My parents had gone to rival high schools in central Washington state before meeting as performers at the 1974 World's Fair in Spokane, WA. I'm sure there's an 'I come from circus people' joke in here somewhere. The World's Fair has only been held in the US again once since then, in New Orleans 1984.

They dated for mere weeks before marrying that November and moving into the student housing at Eastern Washington University while my dad continued his schooling. The day after their wedding my mom announced she was pregnant, and just shy of nine months later I proved her right.

My twenty year old mother had her hair in braids during delivery making her seem even younger and convincing the nurses that she was a teen mom planning to give up her baby. Thus it was hours before she could convince them to let her hold me. 

I was named after, wait for it... my mom's high school boyfriend's wife. Yes, you read that right. But since my dad has brothers name Mike and Mark, my sister was named Marcia to make it appear we'd been named after our uncles. What my parents didn't realize is that Mark had been named after grandpa's old girlfriend Marcia. 

Many years and a dozen moves between 5 cities later I would become close friends in high school with two other girls born at that same hospital that same weekend. Fast forward another fifteen years and ten moves- I discover that another new friend was the daughter of the woman I'd been named for!

I've always found it interesting how the world brings people together, how much more connected we are than we ever realize.

More Answers, More Questions

Two nights ago I had nightmares that my son collapsed from his tremors. From tremors... When I woke up I realized we haven't used the word 'tremor' in a few years. We've been referring to his recent episodes as 'seizure like' or 'Tourette's explosions.' But 7yrs ago, at the age of 11, on his list of diagnostics just below Asperger's and Tourette's is the word Tremors....

He's had 3 more episodes in the last 2 weeks, he had a doctor appointment last week and we've been referred to a Neurologist but everyone seems confused. I KNOW these dreams were my push to search for help in the right direction. Just like fifteen years ago I KNEW something was wrong with Geoff's skull.

I didn't sleep much, was awake for good at 4am and started searching... First I came across MS info that seems close but not quite. Then I saw Parkinson's and I just knew. Reading through the symptoms it was hard not to cry. Out of 10, 8 are a solid fit and the other 2 have occurred just not as consistently. At the same time, I feel relieved?? It's like the sun came out when I saw the list of symptoms. Such a twisted combination of known and unknown, relief and fear.

I finally said something to Doug last night as the kids were getting ready for bed. My husband, who is the fact checker, the one who doesn't believe without 3 witnesses and a signed document. He stopped, thought for a minute, and nodded his head. Then he went into the kitchen to talk to Alex, returning with a grim look on his face and nodding again. It all fits. The full body tremors, the recent hearing loss, the trouble swallowing, the legs buckling when he stands...

I told him that I don't plan to say anything to the Neurologist until he's fully evaluated things and then ask him to rule it out if he hasn't already. Doug told me I should say it up front, because I've never been wrong yet on a diagnosis and we can't wait for them to figure it out on their own. I've been down this road before, with the Spirit literally yelling at me to help one of my children because no one else could see what was wrong.

This whole last month has been so insane, swinging from the realization that he's an adult and mentally capable of doing all those adult things I somehow never planned for but now the realization that while he may finally be mentally capable his body is completely revolting. And of course I can't tell him yet, can only assist him in tracking his symptoms while we wait for our appointment with the Neurologist. Continue living in medical limbo.