Do You Think There’s A Bar In Heaven?

Today marks my second Mother’s Day since my mom died.  Last year, I was still in a bit of a fog, but this year I totally recognize the loss.  Instead of being sad and morose, however, I have decided to focus on all the great things that made Patricia Ann Gordon a fabulous mother.

1.  She had a fantastic sense of humor.

My mom was funny. Hysterically funny.  And she didn’t hold back.  To the point that she told the worst jokes ever because she would laugh so hard halfway through she could never get the punchline out.

2.  She was a goofball of the first order.

She had a wonderful sense of the ridiculous.  One year when I was about 14, she tried a new recipe for Apple Brown Betty.  And it turned out awful.  I mean, we all gallantly tried to eat it, but it was impossible.  About 5 minutes in to trying to gag this concoction down, she slams her fork down, looks at the rest of us, and says, “this is disgusting!”  We are all so relieved we didn’t have to keep trying to choke it down, we didn’t pay much attention to what she was doing.  She stood up, pushed her chair back, walked over to the stove, rifled around until she found the recipe card containing the disaster, and then ordered us all to come to her.

Not entirely sure what my mom was doing (she was really capable of anything at this point), we timidly went along.  She ordered us to hold hands.  We did.  She ordered us to dance around in a circle. We did. She jumps into the middle of the circle, rips the recipe card in half, and then jumps back, then orders us to to hold hands and dance around in the circle again.  This went on a few more times, with her jumping in and out to rip the card in smaller and smaller pieces.  Eventually, someone (not me!) asked, “what are we doing?” and my mother calmly said, “we are having a recipe destruction ceremony” as if that totally explained things.  Which I guess it did, because when the ceremony was over, we cleaned up the kitchen and went about our regular routines, as if this was a completely normal occurrence.

3.  She was ahead of her time.

I was 16 when my mother called me into her room, sat me down on her bed, and presented me with her treasured copy of The Joy of Sex.  But she didn’t just give me the book and walk away.  She talked to me about sex.  Not just a birds and bees discussion either.  She told me sex was wonderful if it’s done right.  And if it’s not being done right, smack him on the head and tell him to do it right.  To never use sex as a punishment or a weapon, as there’s always another mailbox on another corner.  Communication is as important in a sexual relationship as it is in any other kind of relationship.  To be adventurous, to be smart, and to protect myself.  

She talked for quite awhile and covered a lot of ground.  I may have blocked some of it out because I was horrified that all the naked women in the pictures in The Joy of Sex were rocking a 70s vibe with hair sprouting well beyond an acceptable bikini line trim and OH MY GOD WHY DO THEY HAVE HAIRY ARMPITS??

Hey Mom! The good news is I did eventually figure out the importance of a well done bj.

4.  She wasn’t a suck up.

When I was 14, my algebra teacher called home to complain that I talked a lot in his classroom.  Most parents would have apologized profusely, proclaimed they were going to have a serious talk with me about my behavior and I would be punished accordingly.  Whether or not they would have done so, who knows? But most parents would have at least made the attempt to appease the teacher.

Not my mom.  She said, “Mr. Leinberger, I have been trying to get her to shut up for 14 years. If you can do it, more power to you. But I have better things to worry about.”

And then she hung up. On him. Turned to me, smiled, and winked. And that was the last she ever said about it.

5.  She embraced her inner loser.

Mom was never afraid to admit when she screwed up. She celebrated that she was the annual recipient of the worst bowler, the worst card player, and the worst dancer/gardener/pinochle player (or whatever else she did that year). She treasured those toilet trophies.  And in doing so taught me that it is totally okay to make mistakes or not be very good at something, without fear or shame.  It’s been one of the best lessons she taught me.

I could go on for days about all the things that made my mom awesome.  But I think this actually sums it up the best:

On Friday I was with Quinn while he got some minor surgery done on his foot.  After it was over, he was so relieved he started acting really goofy.  I commented on his behavior and he announced loudly and proudly, “I know I’m a goof. I got it from Grandma!”

Love you Mom. I hope they have martinis wherever you are.

If You Think I Am Doing Fine, It’s Because I’m A Phenomenal Actress

I was chatting with a friend of mine yesterday.  She was telling me about some medical stuff she’s been going through and how emotional it’s made her, and I was commiserating with her about it.  And then she thanked me for listening to her, which frankly I thought was a bit silly and totally unnecessary, seeing how I have texted her at 2AM to ask stupid questions when my heart make this weird rhythm and to ask for advice on how to check if my kid is still breathing because it’s 3AM and I think she looks vaguely zombie-colored and I’m starting to freak out.  And then she said this,

“Oh please.  You never complain. You are a rock.”

And I thought to myself, “it’s a real friend who will lie to you like this when they know you are cracking up.”

And then today I was chatting with another friend and explaining that I’m pretty sure my brain is fried because I keep. screwing. things. up.  And she said,

“It’s okay. You’ve been going through some stuff. And I love you. Blah blah blah.”

And I thought to myself, “it’s a real friend who recognizes how uncomfortable I am with expressions of emotion and will just say ‘blah blah blah’ in place of actually mushy stuff.”

And then I was reminded how, a few weeks ago, another friend of mine actually came to me for advice on how to manage their life better which I thought was such a nice compliment, really, that someone thought I would be able to help them organize their kids/home/work/school life better.  Or perhaps my friend had fallen down and had a concussion and was confusing me with someone who actually could do this.

And then, it dawned on me, “Holy shitballs. People actually think I have my shit together.” ‘

I really should be the winner of a goddamned Academy Award. Or at least an Emmy.  My life is a reality show just waiting to happen. Where in the hell is that putz Ryan Seacrest when you need him?  (And by “putz”, I mean “genius” Ryan. Really. Call me...)

I SO do not have my shit together. Picture someone the exact opposite of having their shit together, and then multiply that by, say, 10 gadsmillionbazillions and you may have what I am.

I am the person who had totally planned to send out the most epically awesome Christmas letter last Christmas as a parody of those obnoxious ones you receive that tell you how fabulous Bobby and Jane’s lives are, how in love they are, how fabulous their jobs are, how amazing their kids are... how nice everything is.  But instead of that, I was going to tell about how, in the preceding 12 months, my mom had died, and on the day we were burying her I was in my kids’ school making popcorn (because it’s a private school where you are expected to volunteer and it was my day to make popcorn), and then my kid’s teacher came in and told me that my 11 year old was hiding under his desk making suicidal comments and his teacher was very concerned, and then I was fired from my long-time job after assuring my partner that it was okay for him to quit his job and go back to school, which he’d done just before I was fired.

And then my other kid had to go get an uber-rare brain disease and that pretty much put the kabosh to my plans for an epic Christmas letter.

I am so not fine.

My life is a series of emergencies, with my only hope being that we all survive them.  And I don’t mean survive as in, “I just don’t know how I’m going to survive another boring cocktail party!” But actually survive as in, still all be living when the emergency passes.  And since, if it weren’t for bad luck I would have no luck at all, this is not an easy prospect.

I must maintain constant vigilance to be sure that my 10 year old daughter does not have a stroke.  Since 10 year old girls don’t really comprehend the idea of “stroke” and “brain death” and “trans ischemic attacks” the way a 70 year old might, it’s an incredibly stressful thing to accomplish.  Claire just wants to race down the stairway, twirl, dance, do somersaults, jump on trampolines, go on water slides, and be a 10 year old kid.  Meanwhile, I get the task of being the fun police and telling her she can’t do any of those things because I don’t want her to stroke out and turn into a cabbage.

Put another way, imagine that you constantly heard a loud sound.  It wasn’t ear piercing or anything, but it was always there.  Always.  This constant, high-pitched whistle in your ear.  While you were eating, working, having sex... always there.  And sometimes you could be busy and distract yourself with other things but, as soon as you had a quiet moment, the sound was there.  Until it was the only thing you could hear and you felt like it was making you insane.  

That. That’s my life.  I am so not fine.

I am fortunate to have wonderful, understanding friends who support me.  And I am lucky to have a fabulous partner who puts up with me.  They are pretty much the only things that keep me from stabbing people with rusty forks.  But nothing, nothing stops me from wanting to stab people.

For example, the other day my 11 year old almost stepdaughter was crying when her dad was brushing her hair.  Crying. To be fair, she cries about everything because she’s “emotional” (bleh) and we all pretty much ignore it most of the time.  But as she stood there and wept at 11 years old because she was getting some tangles gently tugged out of her hair, I wanted to scream at her, “for fuck’s sake, Claire didn’t cry that much when she got fucking BRAIN SURGERY!!” Suck it up you big. fucking. baby!”  I so desperately wanted to stab her with the hairbrush that I had to walk out of the room.

I am so not fine.

This weekend is Mother’s Day.  As much as I would like to depend upon the calming effects of alcohol, I fear fortifying myself with liquor will only make it impossible to control my stabby rage.  The amount of Xanax I need to soothe myself has crossed the line from “therapeutic” and has entered into “toxic” territory.

Therefore, I am going to hide in my room, reading senseless and trashy novels, and hope that no emergencies befall anyone because I have exceeded my ability to cope with them.  I will grit my teeth and endure another day without stabbing anyone because I don’t really have a choice.  And I will continue to buffalo the world at large because, I am so not. fine.

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.”