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.

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.