Race for the Cure (minus 1)

It won’t be nearly as much fun without my biggest fan!

Tomorrow morning I will gather in Central Park with some 25,000 other runners and walkers, survivors, and friends and family to support the Susan G. Komen Race for the Cure.  This will be my first race in a pink “survivor”  T shirt, insisted upon by Meghan, my biggest fan.

This was our year.  I registered Meghan as a “real” walker.  She got an official race day T shirt, and a number too.  She was so proud to be walking with her Mom, and Grandma – two “survivors.”  She was thrilled to be registered, and wear a number.  She was looking forward to waking up super early. 

Except, she won’t be coming.

At 6:30 tomorrow morning my Mom will pick me up.  We will each wear a special banner designed by Meghan.  We will pick up our friend, another survivor, and we will head to Central Park.  The car will hold one less this year, and if I might say so myself,

I thought it all day.  I thought it to myself.  I even hid in my room and cried a little, ok a lot.  I had quite the pity party going for my girl.  Asking over and over WHEN she is going to get a break, and WHEN is something going to go her way, and WHY can’t she seem to just have some fun when her HEART and SOUL are ALWAYS looking out for other people.  And, not to be surprised, she never said once all day that it wasn’t fair.

She encouraged me to go, even without her.  She said she was sad, and disappointed, but we made a date for the American Cancer Society walk on Staten Island in October.

She is asleep on the couch right now with 102 fever.  She woke up great this morning.  By noon she was developing a fever.  She was complaining of a headache.  By 2 PM she had cleared 102 and we headed out to the urgi center.  After an OBNOXIOUS 3 hour wait, we left with the diagnosis of  (“It’s probably”) strep, and (maybe) and ear infection.  I sometimes wonder if they train to be meteorologists, and end up as doctors – probably…maybe… UGH!

He second dose of Clindamycin will be at 11PM.  By noon tomorrow we will know if it was bacterial or viral because she should feel much better, and the headache – that always scares the CRAP out of me, should be gone.

By noon tomorrow I will be home.  Back from my race.  Full of conflicted emotions.  I have been to this race almost every year since 1998, but Meghan kept calling it my “first” race.  I will be glad to be with my mom and my friend, but really, what good is any race or celebration without your biggest fan?

Race for the Cure Logo

“It’s not fair!”

“It’s NOT fair Daddy!”  Came the screech from the basement.  I held my breath. 

“You can’t do that Daddy!  It’s NOT fair!”

When I heard my husband return the challenge with an “Oh yeah? Watch this!”  I knew all was well.  The giggling that followed sealed the deal.

I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”

She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms.  She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”

She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me.  She simply wiggled in the play time when there was room.

This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!”  And I would have understood.  I know very few people who have given up more blood than she has.  And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!”  But she didn’t.

This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell.  Nope.  “Won’t it be great to have them off before most of my friends even get theirs on?”

So as I scheduled one more MRI this week.  This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!”  Nothing.  Just the typical, “Can you stay, and will I need a needle?”  Followed by, “I hope I can watch a movie this time because I don’t like having my head done.”  How disturbing that this will be her third brain MRI.

This has been one hell of a summer, following one seriously wild spring.  I have lost count of the appointments, and it is probably better.  They aren’t going anywhere and we will continue to have to roll with it.  As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”

But then I look at my 9 year old.  Wise beyond her years.  Content to live in this house where she is so loved and appreciated.  We have had many talks about the suffering of others through the years, and especially this year.  She knows she is not alone in having a tough path to travel.  She also knows it could be worse.

Maybe that contributes to the poise and grace under pressure.  Maybe that is why she is so insanely mature.  Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.

But God is good – all the time!