Reality Check

Today is the 1st Annual World Moyamoya Day to help raise awareness about this rare (and pretty scary) disease and to celebrate its survivors.

Peter and I were talking last night about Claire, her diagnosis and prognosis, and what the future holds for her.  I had to clear up some misconceptions he had... and thought I would take the opportunity today to do the same for all of you, dear Readers.

1.  Claire is not cured.

This seems to be the biggest misconception.  Claire’s surgery did not miraculously “fix” her.  Claire’s surgery was an attempt to provide the means for her body to fix itself.  Because Claire is a pediatric patient and her vessels are not big enough for a full bypass procedure -- Claire had an indirect surgery, which should allow for her body to create new blood supply to the affected areas of her brain over a period of time.

2. Over a period of time...

That’s a very important point there.  It will be six months to two years before these new blood supplies develop in Claire’s brain.  June 7 will be Claire’s six month anniversary and June 12 she will have a procedure to determine how things are progressing.  During this period of time, Claire is still at risk for stroke, seizure, TIA, and other scary brain things.

3.  How at risk?

Well... high risk.  Very high.  Claire had at least three strokes before her surgery.  I say “at least” because all the strokes happened in so-called quiet areas of her brain and she had no outward signs of them.  So three strokes show clearly on some of the many brain scans Claire has had done, and two more are questionable.  So, our fearless warrior child could have had as many as five strokes before she had surgery.

Claire also recently had a trans ischemic attack (TIA or “mini-stroke”).  During a TIA, a blockage occurs, disrupting the flow of blood to the brain.  A rare complication of a TIA is a brain hemorrhage -- which can be fatal.

Claire can, and likely will continue to have “episodes” while her brain is healing itself and developing new blood flow.  No one knows what the probability is -- this disease is so rare, not much is known about it at all.  And Claire is an anomaly in so many ways that she’s even harder to diagnose.

4.  Claire is not the same as she was.

Because Claire looks the same, and mostly acts the same, and because I treat her the same as “before” -- people assume she is the same.  She isn’t.  This diagnosis and her treatment have caused major changes in who and what Claire is and will be.  She is not worse -- she is simply a different Claire now.  I’m not asking anyone to treat her different (as I said -- I don’t) but I would like it if people would understand that she’s been through a major trauma and it has affected her. It will continue to affect her.  And we are all doing our best to deal with that.  Claire requires a bit more patience than “before”.  So does her mother... and her brother... and others who love her.  

5.  What does this all mean?

I hate answering this question.  HATE.  It’s scary and I don’t like to talk about.  I’m not sailing away on the Good Ship Lollipop wearing my rose-colored glasses when it comes to Claire’s prognosis -- but I also don’t particularly enjoy thinking about or talking about the death of children.  Any children.  Especially my child.  I prefer people digest the facts themselves and come to their own conclusions, or Google it.  But, that’s not been working out so well (see Exhibit 1. Peter) so... here goes.

Claire could die from this.

There. I said it.  She could die. Of course, she could get run over by a runaway Dial-A-Ride bus too -- there are no guarantees about how long we get to bless this world with our presence. But there it is. Claire could have a massive stroke today, tomorrow, or (hopefully) never.  The surgery may be a success, or it may not.  This could develop on the other side of her brain, or it might not.  We. Just. Don’t. Know.  I’ve been told a lot of scary facts, and figures, and I don’t like to talk about them. Or even particularly think about them to be honest.  No one does.  

You don’t want to come up to me in the grocery store and ask, “How’s Claire?” and have me respond with, “Well, there’s an upwards of 67% chance that she could have a massive stroke and die within the next six months.”  What’s the proper response to that?  “Ummm... I think I read somewhere that carrots are good brain food and I think they’re on sale this week.”?

Nope.  That’s not a conversation I want to have with anyone. Ever. So instead I focus on the ups and try to mitigate the downs.  

6.  So what are you going to do?

We are going to do what our neurosurgeon suggested we do... Live.  Claire’s life has been forever changed but we are still going to enjoy and celebrate that life as it is now.  We are going to celebrate the small victories (staying on honor roll despite all she’s been through) and the large ones (surviving a TIA).  She is still going to have to clean her room and eat her vegetables.  We are not going to mourn all the things she can’t do (ride a roller coaster, go on a water slide) but instead choose to enjoy the things she still can (ride a bike, swim).  For however long we can, we are going to live... and hopefully, hopefully, live well.

And we are going to try... TRY to listen to what Bob Marley said:

“In every life we have some trouble.  When you worry, you make it double.  Don't worry. Be happy.”

All Fighting Is Dirty

Recently, I decided that the time has come to remove my children from their extremely small, private, faith-based school.  The reasons why and how I came to this decision are a topic for another blog post.  But, suffice it to say, it was not a decision I came to easily.

One of the many reasons I preferred private school was because I felt the small size of the school kept my kids safer than if they were one of the masses in the public domain.  You see, my son, Quinn, is a bit of a peanut.  A whole lot of charm, intelligence, and wit is packed into his 12 year old, 63 lb., 4’5” frame.  But, the reality is, charm, wit, and adorable dimples will only carry him so far.  Eventually, some dumb jock is going to look at Quinn and see nothing more than an easy target to prove his “masculinity”.  I had hoped to keep Quinn at his parochial school until he grew bigger.  Only he hasn’t grown or gained anything in over two years, and we’ve run out of time.

So I am teaching Quinn how to fight.

Well, actually, since there are just some things Moms shouldn’t teach their sons, I am making arrangements for a former soldier turned law enforcement friend of mine to teach him for me.  Although Peter is a sweet, loving, caring, good man -- a brawler he is not.  And the sad fact is I have been in more fist fights than Quinn’s father, so he’s not my primero uno choice either.

I don’t want the so-called self-defense courses they teach locally.  I’m sure they’re fine and dandy, but that’s not what I have in mind.  And as much as Quinn really enjoyed his tae kwon do classes, I felt it looked more like aggressive dancing than self-protection, so that’s not going to work either.  Pretty just isn’t going to cut it.

See -- all fighting is dirty.

My brother taught me that a long, long time ago.  There’s no such thing as a clean fight when it comes to the playground.  It’s about being able to walk away with all your teeth and your pride intact... the rest doesn’t really matter so much.

I was lucky to have a brother to teach me: Try to walk away.  If you can’t walk away, run.  If you can’t run away, strike hard and fast and don’t stop until they’re down on the ground and then get the hell out of there.  Go for the eyes, throat, or knees.  It only takes minimal strength to rip someone’s ear off.  If it’s a guy, grab their balls, squeeze, and twist.  If it’s a girl, wrap their hair around your fist and yank with all your might.  An elbow to the back of the neck can knock someone out (I actually used that move on a drunken pursuer in college. The guy face-planted in the middle of the street.  I took off my heels and ran like the wind -- shocked that it actually worked.)

Now before all my liberal pacifist friends get all fired up that I’m advocating violence -- let me be VERY clear... I am not.

However, one only needs to spend a few moments perusing the headlines to see, we have a bullying epidemic.  Kids are being tortured by other kids in new and shocking ways all the time.  Suicides are rampant and our kids are in crisis.  No matter how many parents are teaching their kids that violence isn’t the answer, there are still some that are teaching them (through thought or deed) that it is.  And those sadistic assholes have some pretty easy pickings out there.  I refuse to let my kid be one of them.

I don’t trust the administration and the establishment within our education system to protect my child.  I have yet to find a school that enforces their alleged anti-bullying plan effectively.  I’ve seen friends struggle to get their school to address obvious issues.  With elementary schoolers committing suicide, I don’t think calling the bullying issue an education plague is an exaggeration.  It’s brutal out there.  I should know.

You see... once... a long, long time ago... I was a bit of a peanut myself.  I was 5’2” tall when I graduated high school, and still didn’t quite hit 100 lbs on the scale.  I was a nonconformist, a bit of a loner, didn’t hang with the “right” crowd.  I had a target on me too. A group of girl jocks liked to gather behind me every. single. day. as I walked the halls; calling me names and kicking my feet out from under me.  My parents had complained multiple times to no avail -- these were the winning girls basketball team members and I was a smartass little loner -- who do you think mattered more?

One day, as I endured my five minute hell-walk between classes, as the biggest girl kicked me one too many times, something inside me just snapped.  Like a feral animal backed into a corner, I turned.  I can still remember how this nearly 6 foot tall girl’s eyes widened as she looked down at 5 foot tall me.  Something instinctual must have clued her in. Uh-oh.  I whirled, arms outstretched, my hands around her throat and ran her backwards across the hall straight into the lockers.  As the jaws of her posse of followers dropped, she squeaked out (my hands were squeezing with all their might -- a squeak was all she could get out), “What is your PROBLEM?!?”  As I throttled her with every ounce of my being, I repeatedly banged her head back against the locker, “I think (crash) you are (crash) a BITCH (crash).  THAT’S (crash) my problem (crash).  Any (crash) questions?"  As I let her go and she stumbled to her friends, she exclaimed, “Jesus. You’re CRAZY!”

Crazy I may have been, but no one ever bothered me again.

Quinn is a pacifist by nature.  He’s good humored, makes friends easily, and is comfortable enough in his own skin that verbal insults don’t bother him much.  Call him a dork and he’ll respond, “Dorks rule the world!”  Call him small and he’ll exclaim, “The best things come in small packages.”  He’s smart enough that he can hold his own in a war of words.  But when some meathead jagoff mothereffer decides that fists beat words just like rock beats scissors... my kid will be ready for him.  I fully intend for him to have the ability to strike fast, and hard, and get out with all the teeth we’ve spent a fortune straightening intact.

And if he doesn’t -- I’d watch out for his sister.  She’s tougher than anyone I’ve ever met.