Friday, January 29, 2016

And the hits keep coming...

Before the age of 18 The Oldest learned a lot of words that the average teenager doesn’t learn: Nevus, melanoma, bed rest, skin grafts, staples, stitches, donor site, graft rejection, mepilex, compression garment, Shriner’s, anesthesia, Bacitracin…..

That was more than enough.  Those days leading to the malignant/benign verdict were long.  So long that seconds were weeks. 

And here we are again. Feeling every second hand on every clock , in every country, in every state, in every home on Earth.

Every call makes me flinch.

There’s anxiety in my chest and I don’t really know what to do besides stand here.  I feel like I have to do something.

Research makes me crazy.  Looking at him makes me crazy.  Not because he’s doing anything wrong but because there is this beautiful person, this incredible young man and something is under the surface of his skin and I don’t know what it is but it’s bad.  Not “cancer” bad but “potentially debilitating” bad.  And I feel like we used up our dodged bullet pass.  Do we get more than one in a lifetime? 

The blind spot appeared a few months ago in his left eye.  Blood work was all negative.  We thought the MRI was clean.  Turns out, we just have a stupid doctor.  Optic neuritis is kind of a big deal.  “A little inflammation” is kind of a big deal.  It’s an indication of Clinically Isolated Syndrome, Neuromyelitis Optica, or Multiple Sclerosis. 

Those words take my breath away. 

Shock tinnitus set in.  The doctor noticed The Oldest’s feet start to shake and my face paling.  He smiled a lot.  He’s a kindly, older gentleman.  He’s probably someone’s grandfather.  He tried to be comforting, reassuring, and soft.  It was like giving us a sweet little teddy bear that was filled with brimstone. 

Now we get to learn a lot of words that near 20 year olds shouldn’t have to learn: Spinal Tap, medication regimen, relapses, flare ups...

He should be learning about college parties, poor life choices excused by immaturity, the usual rites of passage that “normal” twenty somethings get to experience. 

And he just keeps going.  He puts the one foot in front of the other with a brave face and it makes me so fucking mad that I could scream. 

I want to take beautiful things and smash them to pieces.  I want to feel something shatter and split apart that isn’t inside of him or inside of me.  I want something to pay.  I want this stolen time to be replaced.  I want him to have a different, long, pain free, wheel chair free life. 

I’m so angry that I can’t even cry.  The back of my throat hurts and my eyes water and the tips of my fingers ache.  But the tears won't budge.  Because the dam will break and I will drown.

I want to grimace when someone else tells me their story.  I don’t want to empathize.  I want to comfort, not connect. 

I want this to be some terrible mistake. 

I want this to be a nightmare that we will wake up from. 

I want this to be just a warning shot, a brush, a miss, deflected….

But all the want in the world will not make it so.

Today, we have some lab work to complete and a spinal tap to schedule. 


Today, we go through the regular motions of life and try to ignore the monster living inside of him who’s name we don’t know.  

Tuesday, January 5, 2016

2015

Wow, this year.....

Well....

It's been incredible.  Incredibly awesome.  Incredibly stressful.

I'm titling it: The Year I Got Too Old for This Shit (Mostly).

I'm too old for petty drama. Though, I think I was born too old for that.  I'm too old for insecurity.  I'm too old for selfies with my tits on display.  I'm too old for giving a shit about someone else's opinion (unless they put it in my face).  I'm too old for Donald Trump and his followers and their bullshit.  Ya'll are fucked up, kay?  I'm too old to apologize for that.  In fact, I don't think I ever would, at any age.  But that's why you like me, right?  Because I speak my mind?  exxxxxxxactly  I'm too old for political fights and religious arguments.  I'm also secure in my beliefs so much so that I don't need to post about it non stop. I have a fulfilled enough life that politics don't define me.  I wish that for others.  I'm blessed enough to be happy and grateful and I wish to spread that shit everywhere.

In some ways, my age has caught up with me.  I'm 37.  I have 4 (5-ish, with Bonus Daughter) kids.  I'm too old for their fighting.  And to argue over chores.  I'm noticing changes to my appearance that are starting to give to age.  A few gray hairs.  My hands aren't as youthful as they once were.  Minuscule things, superficial things.  Things I'm mostly okay with. Growing old is an honor and far too many would trade places with me.  I will do so gracefully.  And, because Carrie Fisher.

We went to a Smashing Pumpkins/Marilyn Manson show and were too told to try to mosh.  Not that there was any moshing anyway.  Billy Corgan was also too old to mosh, so it was okay.  Actually, a friend and I both had migraines and by the end of the epic light show, we both turned our backs to the stage and watched the drunk people dance.  And then, out of maturity, we mimicked them.  Because we are too old to give a shit.  Then, we went to the Foo Fighters' 20th Anniversary show in Indiana.  Yeah, 20 years.  I've seen Nirvana (October 30, 1993, Hara Arena) and I always feel like that was just yesterday.  To go see the FF's and think that it was their 20th anniversary?  When John Popper took the stage to join - I'm sure there were people (read: kids) in the crowd that didn't know who he was instantaneously.  It was an incredible show that I enjoyed with the boy I've known for almost 22 years.  And, like old people, we just picked a nice spot to sit in, watch, and listen.

I learned the value of good health insurance when The Youngest Boy's appendix popped.  Heavy words like: deductible, co-pay, maximum out of pocket, etc.  They're all in my, almost regular, vocabulary.  Because then, The Oldest developed a blind spot in one eye.  And we still don't know why.  When the initial eye doctor effed up - I was too old to give a shit about the girls lack of experience or understanding.  When some unsupervised kids knocked a bike rack over onto my head resulting in a concussion that sent me to the ER for 7 hours, I was too old to give a shit why their parents brought them to a beer festival.  I was also too old to give a shit why their mother was angry at me - a sober woman enjoying a Bavarian cream puff with my husband at an art museum whilst pondering the skyline - when her shitty parenting is what got us both in the situation.  I'm too old to want to pay for my medical bills in excess of $5k.  So, she can do it.  I got too old to jump up and knock her on her ass.  That should, in and of itself, solidify that I'm an old fogey.  I didn't hit any of the people I wanted to.

We further nailed our age down by becoming soccer parents, Cub Scout parents, Science Olympiad parents, college kid parents, then Soccer and Science Olympiad Coaches, and parents who go to bed at 10 for work in the morning.  We came up with lineup lists, sensible halftime snacks, and told boys to keep their hands out of their pants during a game.  We stood outside while The Youngest Boy sold popcorn to pizza parlor patrons.  We got up at 8 am to yell at referees who were not much older than The Oldest.  We watched The Middle Son break out of his shell and explain science to small children with ease.  We also watched as he won a Super Smash Brother's competition with expert precision. He became a teenager.  He even made his first girlfriend.  He's also writing a full video game with his own music and sprites. We watched The Oldest become a college student, majoring in history.  We watched Mini Me learn to read and write out of no where.

I'm so old that I lost 4 friends this year.  3 to drugs and one to unknown causes.  I'm too old for heroin.  We're too old for heroin.  When I think of their faces and the times we had - I still visualize them as teenagers, in the back of Ron's van, being crazy.  The fact that they never left 2015 breaks my heart in such a way that words would not justify.  Our generation, Gen X, seems to be able to party like rock stars while mastering parenthood and careers and still get up in the morning until we don't.  I'm grateful that I don't understand that life.  I'm pained that Ryan, Jason K, Jason B, and James will not be on the next leg of this journey.  There will always be empty seats in their memory. Then the thought hit me - from here, the list will grow.

I'm old enough to fly to Seattle without my parents and spend a glorious weekend with my husband.  Sightseeing, once in a lifetime opportunities, historical ventures....  I graffiti'd a museum exhibit.  We went to sit under the bridge on the muddy banks of the Wishkah river and only some people will understand the magnitude of that.  Because you're old too.  We went to Kurt's childhood home, went to his old haunts, walked around Aberdeen for hours and ate dinner in the town that inspired legends.  Then, we found the city of Olympia.  Some wish to retire to Florida.  Not me, you'll find me in the Washington State capital, sipping on some Burial Grounds coffee and walking the beautiful streets.  We peacefully strolled, arm in arm, in love with a city filled with fall colors and our favorite treasures - a record store, an antique shop, delicious coffee, a live theatre...  Now, I'm homesick for it.  Then, after my dearest ripped me away from the perfectly amazing love affair I was having with it.  We went to downtown Seattle and ventured to the Seattle Art Museum.  I'm too old for the bedpans and Ford Taurus' hanging from the ceilings. But not too old to stand in awe of a 16th century marble statue of Aphrodite.

To further drive home the fact that I'm too old for this shit - we went to the EMP Museum's 90's Nightmare Prom themed party.  We were the only ones who actually went to a prom in the 90's.  It was interesting to get the perspective of our coming of age via 20 somethings in Seattle.  I'm not sure they understand.  That's okay, I'm too old to understand their shit too.  The next morning we got up early to eat in Collections Cafe, owned by Dale Chihuly.  His work makes me happy.  He and William Morris.  It was such a supreme experience and I felt like I was home.  We then ventured into the Chihuly Gardens and my breath was taken.  We followed that up with a ride up to the top of the Space Needle where I decided that I was too old for my fear of heights and seeing the beautiful city was more important.  Plus, there hadn't been any falls from the Space Needle in a long time, so I felt confident.  We rounded out the day and trip by driving to Kurt's home where his life ended.  It was cold and dark and surreal.  And standing by the side of the only person I know that would ever feel the moment as ardently as I made the whole experience so remarkable.

I've added "Crochet Artist" to my resume.  Which makes me really old.  Only old women do that.  But, I stitch such things as Ninja Turtles, Dr. Who items, video game characters... Usually hats and my first blanket.  Now, I can say that I've done them.  And, I'm old enough to know the value of that.

We did a great many things, also, that proved you can never be too old for this shit.  Like attending Comic Con in full cosplay as Kitty Pryde and Wolverine.  Took an inordinate amount of selfies with Oreo cookies in every flavor, took the kids to see Weird Al, drove to Chicago for our second annual road trip to Godzilla (g-fest), played miniature golf, turned our house into Arendelle for Mini Me's birthday, dressed up for Halloween, did goofy shit at the store and befriended a really wonderful cashier who retired yesterday, binge watched every comic book based television series available, we fed jello and pudding shots to our adult family members and just generally had a spectacular year.

 And I'm finally old enough to appreciate every second of it.