Dec 29, 2013

Dear Thomas,

I went to your house on Friday to spend some time with your wife. I haven’t hung out at her house in probably 20 years... and I have missed it more than I knew.  I only wish we were seeing each other under happier circumstances.

Greg was there. He is supporting her, like he does.  I had met him once or twice, way back when. He didn’t remember me, and was somewhat horrified to be spending an evening with a former fiancee of a Northview wrestler.  That was worthy of a few giggles.

We talked of people and places from our 20s. It seems so long ago when we were all that young and silly. How much has happened in those two decades.

We talked of how you and Erin met. She thought you were kind of an idiot at first.  Funny how a soulmate doesn’t always start out as one. But I guess one evening at Duke’s was enough for your hidden charms to win her over. 

We talked about the kids.  You and Erin sure made beautiful children. I toured their rooms - Lili’s doll collection freaks me out too.  We talked about Willem. Nearly two years later, and I still can’t comprehend the horror of his death. 

We talked about you, of course.  How could we not?  I learned so much about you, from the wife who loves you. Then, now, always. How you used to love Christmas so much, you would make hoofprints in the snow and spread glitter from the reindeer. How you would jingle bells and make Christmas-y noises as you were putting out gifts.  What a wonderful father you were.

We talked about your bad days. I know I didn’t know you well - ours was a friendship baptized by the fire of critically ill children. I always worried when I posted something had happened to Claire - how you would react. You were so sensitive when it came to kids.

Thomas, you were so loved. By your wife, by your children, by your friends, by your brothers in arms. What you did was not the answer. The world is not a better place without you in it. For anyone.  I am just so unbelievably sad that you couldn’t see beyond what you lost to what you had left.

I hope there’s something after death. I don’t know if I believe, but I hope you found Willem. That you are together in eternity. That you found your peace. That you will watch over the beautiful family you left behind and protect them as best you can. 

Before we left, Erin took me downstairs to see the playroom. She detoured to “your” room. Before she opened the door, she said, “I don’t know what to do about this...” and then... a microcosm of you. Yes, you were indeed the giant slob that Erin said you were. A collection of random things all thrown about in a whirlwind of mess.  

But as I looked closer... a bottle of Old Spice. Erin had said earlier it was the only scent you would wear, and that it smelled so good on you. You kicked it old school, didn’t you?

Your guitar, music open on the stand.  A beautiful pencil sketch you made of your beautiful boy. A painting you made of a pink shell.  Artist.

Fatigues, a rucksack, a welcome home poster made by the children, decorated with a proud American flag.  Soldier. Father.

Tshirts, socks, shoes, belts. Messy husband. We laughed about your cowboy hats. They truly were ridiculous. She hated them. But she smiled and laughed just looking at them. Soulmate.

You were so many things to so many people, Thomas. You will be so damn missed.

Dec 21, 2013

What the Duck?

If you’ve watched the news at all over the past few days, you may have caught wind of how a certain duck patriarch ran afowl of his employment contract for expressing views in an interview - ones he’s been known to have pretty much his whole life.

In exchange for $200,000 per episode, Phil Robertson knowingly signed an employment contract which stated he would not do anything which would reflect badly on his employer, A&E, nor the Duck Dynasty brand.

And then he went and did an interview where he, without being prompted by the interviewer, stated his viewpoints on homosexuality and race relations.  Suffice it to say, they weren't what you would call politically correct.

So, A&E put him on hiatus (which means they did NOT fire him - they just wanted him to go quietly away for a little while until the next shiny object distracted the television sheeple, and then they could bring their rainmaker back with little fanfare).

Except, well, before you could say “duck commander” everyone from Charlie Sheen to Sarah Palin was weighing in about how abhorrent Phil Robertson’s views are (which, I have to agree, they kind of are) to how the liberals were trying to put a chokehold on ole Phil’s constitutional right to free speech (which they kind of weren't) to how “shocking” and “horrible” and “disgusting” and “racist” and... all this is.

Now wait just one cotton-pickin’ minute.

Don’t we still have soldiers in Afghanistan?

Isn’t genocide still happening in Syria?

Doesn’t North Korea still want to nuke everyone?

Isn’t our healthcare system still in crisis?

Aren’t homeless people still freezing to death on our city streets?

Aren't children going hungry as the government reduces their food benefits?

Don’t we have bigger things to worry about?

My cohort and sometimes partner in crime posted something on Facebook about how he just wanted everyone to shut up about all this.  And, as things often do in Facebook, it turned into a troll war about liberals vs. conservatives.

Holy shit people, are we really politicizing this? THIS is our issue?

And then to top things off, one of his “friends” called me his “old lady” and a liberal. And I don’t even know who the hell this asshat is.

You know what? I’m irritated. On a LOT of levels. I’m irritated by the stupidity of people making this an issue. I’m irritated how there are big problems in the world, and we care more about two jackasses who named their offspring after points on a compass, and how much a 21 year old child acts out by shaking her ass.

I’m irritated someone did an interview with a 60 some year old redneck from the deep south and then acted surprised when he espoused opinions which didn’t fit the current culture’s version of correctness.  People, opinions are like assholes - everyone has one and most of them stink.

I am irritated how, when A&E, in a stroke of genius marketing, pulled Mr. Robertson from his Dynasty and then everyone cried they were trampling Phil's constitutional rights.  Dear Tea Partiers: If you’re going to use the Constitution as the foundation for your actions, it would probably be a good idea to have a basic understanding of the document.  But let me take a moment to try to educate you in a really small way.  If you make a stupid comment and someone tells you you’re stupid, that doesn’t mean your freedom of speech has been violated. You have not been imprisoned or persecuted for saying your stupid thing. You were simply informed it was stupid. And as for Mr. Robertson being put on hiatus for saying that stupid thing? That wasn’t persecution... that was exercising a clause within the employment contract he signed and was fully aware of.

And I’m irritated about another thing. Freedom of speech doesn’t mean freedom from consequences.  Phil Robertson exercised his right to express homophobic and racist comments under the guise of Christianity, and other people expressed their right to say, “holy crap! That guy is batshit crazy!” and then A&E exercised their contractual right to put Papa Phil in the time out corner.

But lastly, I’m really REALLY irritated someone called me a liberal (with a sneer). God DAMN that pisses me off. I had a friend (now a frenemy) who used to call me that a lot. It annoys me to no end.  Here’s the thing:

I don’t like organized religion

I think our new pope might just be a Saint.

I am agnostic: I belong to the church of “I don’t know”

I would fight for your right to believe in whatever God you want.

I voted for Bush, twice.

I also voted for Obama.

I’m a welfare recipient.

I support drug-testing for me and any other welfare recipient.

I support capital punishment.

I also support gun control laws.

I think the healthcare system in our country sucks.

I don’t believe ACA is going to fix it.

I support equality in all things, even saying the “N” word: That word is so powerful, so hateful, no one should say it. No one. The idea that the color of your skin dictates one person's right to say a word, and bans another from saying it, is ridiculous to me.

I believe the world will always be unequal, divided by the haves and have nots, the dos and do nots, the ares, and are nots.

And so many other things. To label me as a “liberal” is just a sign you don’t know me.

I am nobody’s old lady.

And I am overducked.

Addendum: For the record, I like Duck Dynasty.  I like that their motto seems to be God, Family, Nature, Country.  I may not believe in their God, but I can appreciate how much they do.  I think Phil and Miss Kay are adorable. I think Jase is kind of hot. And I have to remind myself that Willie's oldest son is still underage (have you seen those dimples? My goodness!) I don't support Phil's viewpoints, but I don't support the viewpoints of a lot of people. I don't think that makes them Satan. I can simply agree to disagree and move on.

Dec 5, 2013

Reason #426 Why I Will Never Win Mother of the Year...

Or, “Why I bought my son a “girlie magazine” for his 13th birthday”

So, my adorable, dimple-cheeked, freckle-faced, sweet baby boy turned 13 today.  Allow me take a bow and tell all the doubters “Neener, neener, neener! I did manage to keep him alive to teenager-hood! Hah!”

Quinn v. Big Wheel
Okay, I mean... yeah. It was touch and go there a few times. Like, you know, that time he required stitches after a Big Wheel accident. But, c’mon! Who face plants off a Big Wheel? Those things are two inches off the ground!

But, I digress...

I am what some would kindly call a “creative” parent.  How I put it is, I’m the mom other moms would like to be if they didn’t worry so much that other moms might be judging them. Or CPS was watching them... whatever.

For the record, I don’t believe in corporal punishment.  My children have each been physically punished twice in their lives.  Once, when Quinn was about 5 years old and it was midnight and the little imp still would not go to bed (sadly, this was before “Go the F**k to Sleep!” was a bestseller), his father spanked him on his chubby little butt. Once. And Quinn screeched in the most dramatic fashion any 5 year old could manage, “I’m bleeeeeeeding!!!”

But we didn’t struggle over bedtime after that.

I once pulled Claire’s hair - hard - when she lost her second $300 asthma inhaler in just about as many months (when I did not have insurance) and acted like, “Whoopsie!”

She has never lost one since.

And there was once what is referred to in whispers as my Honey Bear Hula moment. I’m not talking about that one.  Our therapist says I’m forgiven.

I am “creative” when it comes to discipline, consequences, and the occasional punishment.  Both children have had to write letters of apology for bad behavior, write sentences for when they’ve told lies, have had their toys, gadgets, games, and loveys taken away until they earned the right to have them back.

I’m also “creative” when it comes to educating them about life lessons. For example, when Quinn was heading over to the middle school, I figured it was as good of time as any to discuss the dangers of drugs and alcohol.  However, I did not sit down with him to have a serious discussion following the D.A.R.E. manual. I’m sorry, but it doesn’t matter how “bad” you try to make drinking and drugs sound - one friend telling them it’s freaking awesome and that lecture goes right out the window.

Nope. I figure kids are visual... so I sat Quinn down with that wonderful educational tool: the ‘Net.  I Googled a time lapse video of what meth addiction looks like. He saw a beautiful young model turn into an emaciated, scabbed horror with missing teeth in a matter of moments.  I showed him a video of a junkie, needle still in arm and dripping blood, passed out in a disgusting bathroom with vomit down the front of his shirt.  I showed him a picture of a crash scene after a drunk driving accident, the teen half hanging out the car door with his brains and hair sliding down the door panel.

Brutal? Yup. Effective? Hell yes.  And since Quinn has already been offered drugs - in middle school - I feel comfortable with my decision to show him this at his age.  I can’t guarantee he won’t experiment - but I can certainly know that he has a vivid picture in his mind of what the potential consequences are... and I’m glad of that.

So, the girlie magazine.  I intended on getting him Playboy... but that’s harder to find in our small town than I would have thought.  So he got Maxim.  It came with a fabulous swimsuit calendar of gorgeous babes in black bikinis.  It has an article with Gandalf - Sir Ian McKellen.  It has a How to Make a Stink bomb article.  It has an article about 54 gadgets, toys, and doodads to make you happy.  And did I mention the swimsuit calendar?  It has lots of really really pretty girls scantily dressed.  Whooo hooooo!

Oh, wait...

I am teaching my son to objectify women.

I am showing him pornography.

I am teaching him about “sex” stuff too young.

No. I am creating a teaching moment. I am being “creative”.

See - Quinn is 13 years old. And he has these things called hormones.  And those hormones make him want to see one thing... boobs.  Or the more politically correct “breasts” - whatever. He’s pretty fascinated with those bouncy bumps in the front of girls’ sweaters.  He’s still pretty discreet about his glances, mainly because I’m not sure he’s sure what’s going on with his body when he catches an eyeful... but he likes ‘em. He’s a male - of course he does.

And you know that thing called the Internet I mentioned earlier? He already knows that a search can gain him access to a naked Miley Cyrus grinding on a wrecking ball - he learned that in the hallways of his middle school on the school sponsored iPads.  So it’s only a matter of time before a Google search is going to earn him a whole lot more than boobies - it’s going to lead him to hard core porn.

And I am not okay with that.

I am as vigilant as any parent about my kids’ web usage.  I have a report sent to me weekly about where they’ve been and what they’ve seen. Besides an over-interest in things farting and all things Minecraft - Quinn has kept away from the naughty bits.  But I am not so naive as to believe that it’s going to stay that way forever.  Eventually he’s going to be led to a video of some guy pounding away on some girl from behind, pulling her hair and slapping her ass, and asking, “you like that, bitch?”

And that is NOT what I want my son to believe sex is about. I do not want him to think that’s what romance is about. I don’t want him to think that’s what women want. And I certainly hope to GOD that his first sexual experience (after college, when he’s MARRIED, of course...) is not going to be what I described above.

I “created” a moment where I could discuss that I may kind of know what he’s going through.  I was a teenager once too and there was a time not far from where he is now that I would have given just about anything to see a real live naked penis. So while I may never have been a teenage boy - I think I understand just a bit.

Thus... I gave him a magazine. With plenty of boobs. Not completely nude, but scantily clad enough to keep a 13 year old boys interest.  And I talked to him about why I was giving it to him.  And what else is out there. And why I don’t really want him looking at that. Because what he may find is not real.

And when his heart and hormones meet in the place where he thinks he’s ready to go the next step, he will be educated on what it all means. What he is responsible for. That having a baby is not the worse thing that can happen with unprotected sex.

The visuals found on the World Wide Web are not a depiction of reality any more than “Real Housewives of Beverly Hills” is a depiction of marriage or “Keeping up with the Kardashians” is a depiction of a normal family... those videos are an illusion. An oftentimes ugly and brutal illusion. Not appropriate for him at this age, or the next 10 years... maybe 20.

I told him he could look at the bikini babes in the privacy in his room only if he promised to read about Sir Gandalf, and tell me how to make a stink bomb.

And perhaps most importantly, that woman are to be respected while they are being appreciated.  Always.

Nov 16, 2013

One Year

Photo by Brandon and Joy
Today a friend of mine asked if I would be willing to write a Christmas article for our local paper.  I have been contributing on a semi-regular basis for a while now, writing about holidays and back to school -- fluff pieces.  It’s something I’ve enjoyed doing so I felt really awful telling her not this time.

See, I have been going through my calendar for the upcoming weeks and man - is that sucker full.  Just this week we have a cardiology appointment for Quinn in GR, and play practice, and then they both get braces in Traverse City, and conferences for the elementary school kids, and then a performance, and webinars, and half days, and Quinn thinks he might have a choir concert on Wednesday, and both kids need haircuts and...

Then I took a look at the calendar a bit closer and I realized... it was a  year ago this week, on a dark, rainy, windy night much like this one, that I received a phone call from one very animated neurologist.  See, Dr. DeRoos had never seen Moyamoya much outside of a text book and he couldn’t quite contain his excitement.  And since I didn’t react with questions like, “What the HELL is Moyamoya disease?” but instead asked, calmly, how quickly could we get Claire into surgery - he thought I was handling the news better than I was.  I sometimes wonder if he thought I was a medical professional of some kind, not knowing that I had researched the word “Moyamoya” when he mumbled it, quite under his breath, at our appointment the month before.

It wasn’t until the end of the conversation when I asked what Claire’s prognosis was and my voice cracked that he seemed to realize that he’d just delivered some pretty devastating news to a mother.  I don’t blame Dr. DeRoos - he’s a wonderful physician and he’s taken fabulous care of Claire. It’s just, as his nurse practitioner told us, you don’t want to be the patient that gets the neurologist excited - it usually means they’ve found something really weird.

One year.

One year ago, on November 12th, our world changed forever.  One year ago this week, I heard the words, “Claire has Moyamoya.”  It seems like forever ago.  It seems like yesterday. It seems like I still hear those words in an echo in my head.

One year.

In that year I have seen the true spirit of my daughter and she is a warrior. I don’t just call her that to be cute and supportive - that chick is one badass fighter.  She’s tougher than anyone I know.  She has been through more than most adults, let alone children, and she still has a smile for everyone.

In this year we have been through surgery, and recovery, and strokes, and ambulance rides, and tests and tests and tests and even today it feels like that is never going to end. But Claire still smiles. And she still fights. And she just... carries on.

At therapy yesterday, I was called in to speak with her and the therapist - which is unusual.  Typically, I go in and let the therapist know what’s been going on - if there’s anything new she should know about.  Then Quinn and Claire decide who gets to go in first.  Yesterday, the therapist came out and got me after talking with Claire.  So, off I go into the room to find out what’s up.  And Claire had wanted to tell me that, going forward, she would prefer not to be in the room when the doctor’s start discussing things like “options” and “prognosis” and “failure rates”.  She prefers that I handle those pesky details and she remain in blissful ignorance.  I don’t blame her a bit. I wouldn’t want the shit scared out of me if I could avoid it either.

One year.

In one year we have dealt with emotional ups and downs, and friends who have disappeared because we’re just not as much fun as we used to be, and strangers who have come up to us in the grocery store to tell us they are praying for us, and daunting poverty, and surprise fundraisers, and the ridiculous antics of one abominable behemoth who just doesn’t get that Claire doesn’t have something called “Meow Meow” but that she has an incurable brain disease that’s terrifying.

In one year I have been angrier than I ever thought possible.

In one year I have been happier than I ever thought possible.

In one year I have been shown so much love and support by the people who matter that the people who don’t are slowly becoming more and more insignificant with each passing day.

In one year I have fallen in love with my daughter, more than I ever thought possible.

In one year I have seen the man my son will be, and am prouder than words can say.

One year.

I don’t know what the next 365 days will bring.  I know we have more tests with more acronyms and more consultations and more drives back and forth to a hospital that I both love and loathe. I know that we have the possibility of another surgery looming over us.  I know that Claire will keep on smiling. And Quinn will keep on making ridiculous jokes. And we will keep on living until we don’t - and we don’t know when that will be.

In one year I have realized that I don’t know if Claire is going to live to be 13 or 103 because life doesn’t come with a guarantee and we are going to take the days as they come and enjoy them. Or not. Because some days you just can’t. But we will try to get up the next day with the same warrior spirit and fight on because after all...

We’ve already made it one whole year.

Oct 31, 2013

The Weather Outside is Frightful

Today is Halloween - one of my most favorite of holidays.  However, my small midwestern town will not be having trick or treating today because it’s... rainy.

61 degrees and rainy.

Not typhoon-type rainy.  Not a little thing that we like to call Thundersleet.  Not even bolts of lightning.  We have what could best be called a case of the drizzles.  And the high winds that our police chief was concerned about? Well, my house is five blocks from Lake Michigan and the trees outside are barely moving.

Talk about your nanny-state.  Jeesh.

I am a child of the 70s.  My parents kicked me out of the house as soon as it was trick or treating time -- snowsuit stuffed under the costume they bought for under $5 at Ben Franklin’s and a mask I couldn’t see out of, pillowcase in hand.  I traveled from house to house in my neighborhood and beyond and didn’t return until (a) 10 o’clock or (b) the pillowcase got too heavy to carry.  Oh, and I ate homemade popcorn balls and candied apples without first checking them for razor blades.  It’s hard to believe, but I’m still alive.

As a kid, I went trick or treating in snow, rain, blizzard, and occasionally (although it didn’t happen often) halfway decent weather.  I mean, it’s candy and people are just giving. it. away. For FREE!  I didn’t care if it was thundersleeting with temperatures hovering around 33 degrees and I was being chased by zombies - I was going outside and not coming home for HOURS.  And nothing horrible or tragic happened beyond a belly ache and some wet clothes.

I have taken my kids trick or treating in similar kinds of weather.  When I lived in Minnesota, they had two costumes - the one to wear to school, and the one made out of polar fleece to wear Halloween night.  And, holy crap! They’re still alive too.

I mean, honestly. It’s raining. Barely. And they canceled trick or treating because the powers that be think the weather might be better tomorrow.  For crying out loud people... we live in MICHIGAN. Where it can be 75 degrees one minute and a blizzard the next.  You can’t predict this stuff.

To make things even more confusing (and worse, to be honest) our city postponed the trick or treating, but the outlying townships (that are less than a handful of miles from my house in the center of the city) still have it goin’ on... and the farm town 8 miles east is a complete go.

What are we, Ludvillians? Wimps? Sugarplums? Do we believe that we’re going to melt from a little rain?  

So, here’s my message to Police Chief Burnett:
This is MY Halloween.  These are MY children. And it should be MY choice weather or not (pun intended) I take my children out for the holiday.  And you, sir, are whatever Halloween’s version of Scrooge is.  Parents have taken time off work to take their kids trick or treating and can’t now because you felt the need to protect us all from some light precipitation.  It’s ridiculous.  Especially considering no one else in any of the surrounding areas felt it was necessary and it’s what a lot of people are calling a clusterf... well... you get the picture.
This is embarrassing.

Oct 25, 2013


It happened today.  Today was the day I had to tell my children that one of their peers, a boy they knew from acting class, liked, and considered a “buddy”, died tragically in a car accident. And despite the fact that our family is more versed in the ideas of death and dying than the average, I was not prepared for this.  We were not prepared for this.

I don’t believe you can prepare for this.

Reading his pocket bible before class. Photo by Anesa Beilfuss
Garrett turned 11 years old today.  Yes, it was his birthday.  And while, no matter what, an 11 year old dying is simply awful - the idea that he died on his birthday makes it so much more painful.  So much more gut wrenching.  Because I can’t get away from the thought that, instead of planning a birthday party with balloons and cake, Garrett’s mother is planning a funeral. 

When I was talking to Quinn, this seemed to make things so much worse.  So we talked about how great birthday mornings usually are: you get to pick what you want for breakfast, and you maybe get to bring treats to school, and maybe everyone has to be nice to you, and you have presents and games and fun to look forward to. So we decided that Garrett went to school today with a smile and happy thoughts. And we are going to hold that in our hearts and not think about his last moments. We hope his last thoughts were good ones. We pray that they were. We cannot allow ourselves to fathom any alternative.

My kids knew Garrett from acting class.  He was a bright, sensitive, adorable kid that Quinn took to right away.  Quinn doesn’t take to a lot of people, but perhaps it was their shared love of all things zombie that bonded them.  Garrett, I’m told, wrote a hilarious skit about how zombies shouldn’t be feared - they are simply misunderstood. It ended with Garrett commenting that he was hungry, and then exclaiming, “Oh look! A fat guy!” and running off-stage.  I’m not exactly sure that I got the whole story, because my almost 13-year-old who refuses to cry about anything, was sobbing so hard it was difficult to understand him. And there was absolutely nothing I could do to make it better.

When Quinn was five, his beloved great-uncle passed away suddenly late on Christmas day. We had spent the day with Great Uncle Ken and the rest of the family, and I thought it would be a difficult concept for Quinn to process - that one moment Uncle Ken was there, and the next he wasn’t (Claire, at three, was oblivious).  

When I sat down to explain to Quinn, a cherubic five year old, how his adored Uncle Ken had passed on, the first death in the family for Quinn... he began to smile.  I was concerned that my abnormally bright son was just not quite grasping the idea of death and dying, worried that he was confused, having just seen “the Greats” the night before, so the words tumbled out faster. Quinn smiled brighter. And brighter. Eventually, I ran out of words, and breathlessly asked him if he understood what I was saying.

Quinn, with the most beautiful smile on his dimpled face said, “Yeah! Now I have an angel in Heaven who knows me!”

I reminded Quinn of that story tonight. And he remembered. And he looked up, and said, “Hey Garrett. I’m not going to kill zombies in Minecraft anymore. Because maybe you’re right, and they’re all just misunderstood.”

Rest in peace, sweet boy. You will be missed.

Oct 18, 2013


From that moment, nearly a year ago, as I sat in a sterile doctor’s office waiting to hear news I somehow instinctively knew was going to be bad, to the moment in another doctor’s office today, this journey has never been easy.  

We have received multiple diagnoses (lesions on the brain, intracranial vascular disease, Moyamoya) to multiple prognoses (great, good, not so good), and it’s definitely been up and down.  

Today was just another day in our new version of normal.

First, let me say, Claire is doing well.  Surprisingly well. Remarkably well.  Curiously well.  You see, Claire’s surgery is not working yet.  So the new neurosurgeon that we met with today... well... he’s a bit perplexed at how great Claire is doing.

Wanna know something? It never feels good when you read your surgeon’s body language as “perplexed”.  Just an FYI.

Now surgeons - they are a rare breed.  They never, never like to admit their work is anything less than successful.  NEVER.  So even if the surgery is only making stuff work, say, 5% better than it was before surgery... they still consider that a success.  So, Claire’s surgery is still considered “successful” - but when you pin them down, they will admit, it’s not very successful. At least, not yet.  But all indications are the indirect bypass Claire had in December will work... someday.  So we are going to focus on that.  It will work... someday.

The fact that Claire continues to have TIAs (also known as mini strokes) isn’t unusual, but it’s not the best news in the world.  The fact she is doing so incredibly well despite them is pretty great news.  And we are going to focus on that.  She is doing well, in spite of.

Today was spent discussing “options”.  There are a few of them, but I can’t say as I like any of them. Neither did the surgeon.  So, we are going to wait and see what her next MRI study shows in December (which we hope shows progress), or until she starts having more TIAs (which we hope she won’t), or until they are more severe (which we hope never happens).

It was scary for a few minutes there, as the doctor looked concerned, as he laid out our options, and as he answered our questions.  Then, right in the thick of it -  when I was trying to swallow past the growing lump in my throat - Claire reached over, grabbed my hand, squeezed it and gave me a smile. And I realized...

She’s good.

So I am okay.  We are okay.  Because, while I don’t have faith in much anymore, I have faith in my Warrior Princess.

She’s got this.

Jun 6, 2013

Pride Goeth Before The Fall, Except When Your Friends Are There To Catch You

Brute force and ignorance. That’s pretty much the way I go through life.  I don’t so much take the road less traveled as the one full of potholes, strewn with fallen trees, that leads right off a cliff.

Oh, and I’m pretty sure I was some genocidal maniac’s mistress in a former life.

So as we have gone through all the stages of Claire’s ordeal, I often hear, “I can’t believe how strong you’ve been through all of this! I would be (curled up in a ball, drunk on vodka-Xanax martinis, sucking my thumb in the corner) a disaster!”

Lemme let you in on a little secret, dear Reader. I. Am. Not. Strong.

I don’t really know how to explain what I am. I only know strong is not it. I think terrified is probably closer. I live in a constant state of paranoia, anxiety, and terror.  Terrified all of the horrible, disastrous scenarios which run through my head on a 24-hour reel will come true.  Terrified I will let one tear fall and then they won’t stop, and the monsoon will wipe out all of Mason County.  I am so afraid of letting go of anything, because then everything would go.  On the rare occasions the tears start to fall, I literally grit my teeth and, through sheer force of will, stop. Because I just can’t. And if that sentence seems incomplete it’s because it is.  I just can’t... everything.

Throughout Claire’s diagnosis, surgery, recovery, and relapse I have had many people - kind, generous, amazing people - ask what I need. I pretty much always say “nothing”. That’s not really true. The truth is - I don’t know.  I have no idea what I need. I really have no idea what is going on around me.  My focus has pretty much been keeping Claire alive, keeping Quinn from freaking out, and putting one foot in front of the other.  That’s it.  Peter has been pretty amazing in keeping the day-to-day wheel a’grinding because I’m clueless.  I don’t think I could manage to wash a dish, or do a load of laundry.  Cooking is touch and go.  It’s just keep Claire alive, keep Quinn sane, and keep on trucking.

And then...

As most of you know, 3 months before Claire’s onset of symptoms, I lost my long-time job. I’ve talked about how painful this was for me before, and it’s still difficult for me.  Not only because I loved it, but because I was paid well for it, and there is nothing, absolutely nothing in our area which could even hope to compare.  It was, and is, a huge blow to my family.

We have managed to scrape by through a series of odd jobs and freelancing, along with some meager savings.  But, just this past week, I realized... the well has run dry and we’re broke. Completely, totally, utterly broke.  The almost twice-weekly trips to Grand Rapids or Traverse City along with lost hours at my part-time job has depleted our coffers to a measly $15.  This was a wake up call I did not need.

I panicked.  We’ve been living on such a shoestring budget, I don’t even have expenses I can cut.  The credit cards are maxed out and I am out of options.  After I ran the numbers for a third time, I sat back in my chair, stunned.

We are so screwed.

The thing is, in the overall scheme of things with everything going on I’m not even sure I would care about being broke except... Claire has a very important appointment in Grand Rapids next week.  We have to somehow get to GR, stay for two days, and feed four people... on $15.  And I just can’t work enough magic to make that work.

We are so screwed.

On a bit of a lark, I asked a close group of my friends what they would think about a fundraiser.  I don’t even know how serious I really was. I mean, we seriously need help, but the thought of asking for it seemed so awful - I just couldn’t imagine doing it.  But still, desperate times and all that... I asked my friends.  No one seemed to think it was disgustingly tacky or ridiculous.  I was given some pretty great information and ideas, actually.  One friend, Erin, even said she was totally “on it”.  I figured she meant she was going to find out what putting on a fundraiser entailed.  I went to bed knowing I would never actually do anything about it.  The whole thing just seemed so overwhelming and icky I don’t think I could do it.  Not now. Not for this.  I need to hold on to my fragile pride.

So... this afternoon I was dinking around on Facebook like I usually am and saw a GoFundMe fundraiser for “A Family In Need” and... holy shit... that’s Claire!  My friend Erin apparently was totally on it... she created a fundraiser page for my family. And... holy shit, someone has already donated $100!

I had to sit down. And grit my teeth because the tears started to fall.

As I was still staring at the screen in disbelief, a message popped up:

Erin: Don't freak out about the fundraising page that I have set up. I'm sending most of it by invite only...

Me:  Holy. Shit. I about crapped myself. I am seriously crying. You asshole. You made me cry.

Erin:  Well at least it isn't because I punched you in the face.

That. That right there is why this woman is my friend. Best. Response. Evah.

A little while ago, I received a message from my friend Heather:  

I have to tell you that I wish we would have done something sooner.  The thought had crossed my mind 1000 times whenever I and hundreds of other people offered to help you and Peter in any way they could. When Erin invited me to the fundraiser page today I instantly messaged her to make sure you knew what she was doing because I honestly thought you would go "ape shit" all over us.
Me:  It needed to be done. As much as it pains me, absolutely pains me to say that, it needed to. But, I'll be honest, if it had been anyone else, I probably would have gone ape shit. But, Erin kinda scares me so what am I going to do?? :-)

Sometimes, lots of times, it’s really really hard to ask for help. But sometimes, sometimes you don’t even have to ask. Friends just know you need it.

Early this evening, my friend Rebecca launched the “public” Claire Chronicles fundraising page for my family.  Within hours so many friends and family had shared the links and people were donating too -- I was completely overwhelmed.  

I am awed, humbled, embarrassed, and yet so proud to call these people friends. They are helping me take care of my baby - this village of friends and family and strangers are helping me and my baby - I don’t have the words to tell everyone thank you enough, so I will borrow these:

I would maintain that thanks are the highest form of thought, and that gratitude is happiness doubled by wonder.  ~G.K. Chesterton

May 12, 2013

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.

May 10, 2013

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.