I used to be afraid of roller coasters

I used to be afraid of roller coasters, and their short, fast twisting, turning excitement.

Then I realized roller coasters and life have a lot in common.  So I started riding them, cause really -what the heck?

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If there has ever been a lesson in the unpredictable nature of life, I am confident it has played out in the last two or so years.  And I am confident I have studied hard, and that I understand.  I understand that just when you think you might understand – you don’t.

You see, just when you think you may even comprehend the every-changing, unpredictable nature of life around us, there will inevitably be a way to prove to you you don’t have it quite right.

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There have been more funerals this year than I care to count.  Maybe its always like this, and I am just noticing now that 40 is behind me.  Or maybe not.  But there have been funerals for friends, for the brother of  friend, for my own father, for my uncle, the precious father of three beautiful adult children, and for my Grandma, and a well-loved great-uncle, and the grandparents and parents of friends… and…

As I sit here thinking about all of them I try for the umpteenth time to rationalize.  And I get farther with some than others.  Some will just never do.

But the ultimate realization is that it’s not really mine to figure out.  It’s not mine to decide how it fits in the grand plan.  And I’m trying to stop looking to figure it out.  Because, boy it can be exhausting.

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And as I sit here in the wee small hours of the morning, I remember – that painful Thanksgiving week last year, as Dad fought and fought, and I wonder why.  But, as much as I miss him, it’s not in a pitying kind of why.  It’s in a genuine curiosity for something I will likely never be allowed to understand.  Very much the way he used to ask me why he made it home from Vietnam and his friend Tommy didn’t.

It’s the same kind if why when Mom asks, why after being 18 years a breast cancer survivor, why she is “clean,” and so many have lost the fight.

As I listen to the rhythmic snoring of my husband, and watch my fidgety sleeping 11-year-old, I wonder.

I wonder how we ended up here – again, on the second floor of this hospital.  Today.  Now.

12 hours ago I thought I was tired.  HA!  What did I know.

450 miles in about 30 hours to celebrate the life of a great man, my uncle.  Lots of driving, lots of thinking, lots of observing.  Lots of admiration for his children, grown up children, who undoubtedly will make him proud forever with their compassion and good humor.  Lots of respect for his wife – living her marriage vows through all the crappy stuff with poise and dignity.  Lots of awe for my other Dad Ken, and GGMa, his mom, as they stood together, their original immediate family ripped in half in just over 2 years time.

12 hours ago I thought I would go to bed early.

But I ended up picking Meghan up from swim practice on the way home from Vermont.  And she walked out of the locker room and almost fell to the ground with tears.

“I can’t walk.  It’s my knee.”

And I checked off the list – Did you fall?  Did you bang it?  Did you hurt it doing dryland?  One at a time I asked the questions, even though I knew the answers.

This knee.  The one we’ve been waiting for since we stopped the celebrex had finally given way.

We had had hopes of finishing swim season first.  That was before we had to refocus our hopes to making it into urgi care without falling.

We were promptly told to get out, and get to an ER.  Fast.  The swelling was too big.

Still in my funeral clothes I raced home long enough to tell Felix to dress for work, and to get into some sweats.  A quick bag for Meghan and I and we were off.  This time to Lenox Hill ER.  Cause that’s where they do the knee surgeries.  And not that I’m trying to plan.  But just in case… Maybe we should be at the right place.

They contacted her doctor.  He’s sure it’s the AVM, but he’ll confirm in person in another hour or so.  In the mean time nothing to eat or drink for Ms. Meghan after midnight.  Just in case.

AND regardless – we remain BEATINGCOWDENS!

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Life begins… at the edge of your comfort zone…

 

Roller Coasters

Nope, not us.  No way.  No how.  Terrifying.  Not going to happen.

Until last week.

Something clicked inside her head, and she decided that she had come to conquer.

There was a pit in my stomach when she first declared she was going to go on Space Mountain.  Roller Coasters have never been my thing either.

But, she even decided who was going to sit in front of her and behind her.  No getting out of it for me.

She told me that she had been through a lot in her life.  And that she shouldn’t be scared of a ride.  True.  There was that quote by Eleanor Roosevelt we had read, and referred to so many times.

No not the other quote, “The only thing we have to fear is fear itself.” – FDR

This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt

The first time we were both a little scared.  Then there was the second time.  And by the third time she owned it.

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_DSC2818“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago.  Twice.  I went too.  And I really didn’t mind.

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“Life begins at the edge of your comfort zone…”  Words I am learning to be truer each day.

And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together.  I did Star Tours too, but virtual reality isn’t really agreeing with me anymore.  Maybe too much reality?

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So she went on Mission Space with her Dad – twice.  Once on the beginner level, then on the advanced.  And they rode Splash Mountain too – just because.

It makes me happy to see her conquering fears.  There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.

And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…

“Never settle for the path of least resistance… I hope you dance…”

“I Hope You Dance” – Lee Ann Womack

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.

The Cowden’s Syndrome Roller Coaster

Maybe if I could attach my cell phone right here…

I can not tell you for the life of me why Spiderman was on my mind today, but I was thinking I could use one of those web shooting things.  It could be modified to hold the cell phone that is constantly in my hand!  I remember when Meghan was so colicky, and I used to carry her all day in that Baby Bjorn carrier.  I LOVED having my hands free again.  I hated that she just kept crying, but at least I could move around a bit. I am starting to feel painfully tethered to my phone.  I waited forever for the vascular surgeon to call.  Now Dr. K from Boston called Saturday, and we still haven’t connected.   

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Paranoid to miss his call, I carry my phone EVERYWHERE I go. I am not kidding, that is my cell phone in the plastic bag at the beach today.

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Today was a banner day. 

It was the FIRST time we have been to the beach since before her first birthday.

  This child was so sensory sensitive that we were both deeply traumatized by the first trip.  It took us almost 8 years to work up the nerve to do it again, and boy has she come a LONG WAY!

 We only stayed a few hours. 

Long enough to get into the sand and build a castle.  Long enough to find a few shells.  Long enough to jump a few waves.  Long enough for her to say, “Mom my knee is clicking every time I step and it hurts.” 

Clutching my old scratched up cell phone like it holds the answers to all life’s problems I silently, desperately, wish it would ring. 

But then what? 

Will Dr. K have a single answer? 

Will he want us to drive 5 hours just so he can say, “I don’t know?” 

Yesterday we saw Dr. P – the geneticist at NYU who started all this about a year ago.  

It was a friendly visit, catching up on all we have done.  I had a chance to thank him for “catching” the Cowden’s Syndrome a year ago.  It was his desire to dig deeper, and to solve the puzzle, that undoubtedly changed the course of our lives, and likely already saved mine.

 He asked a lot of questions again.  He looked closely at Meghan, especially her legs.  He pointed out again the 1/2 cm discrepancy.  He pointed out the swelling in her LEFT knee, likely the result of her favoring her right knee. (The AWESOME PT Dr. Jill, already called that one!) 

He listened to my concerns about her avoidance of activities.  He said the fact that the Celebrex is working means to him she likely has arthritis due to deterioration from small amounts of blood circulating the knee joint.  Not JRA, but degenerative arthritis.  He said she can’t stay on Celebrex forever. And although I knew that I was busy shuddering at the alternatives. 

He will nose around, and see if he can get a closer orthopedist to take a look.  Then he will look for an oncologist for me.  In the mean time he said, let’s just get a screening sonogram of her kidneys, to be safe.  Just a baseline. 

3 hours later we had word that her kidneys are “beautiful” and untouched by Cowden’s. We left NYU exhausted, and relieved, but still waiting.  Always waiting, and wondering, and worrying.  What next?  Can we fix it?  Wait… nothing new please!  We haven’t fixed the last thing yet… and so on and so on. 

 Tomorrow we will go back to the pediatrician to recheck for the recurrent strep.  Then, a much anticipated play date for Meghan.

Then Friday, its to the plastic surgeon for my recheck, with another playdate for Meghan. 

All the while my cell phone will be close at hand. Last year at Disney they finally got me on Big Thunder Mountain Railroad.  Good thing.  I think it’s a case of life imitating amusement park here. 

Cowden’s Syndrome is a great big roller coaster, so I better get a stronger stomach!