“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!

Thought for the day…

A friend of mine posted this on her Facebook page today.  She is the kind of person who every day finds something to be grateful for.  I love that about her.  Those are the people worth surrounding yourself with!

Today was the kind of day that could have gone either way.  Three doctors appointments back to back in ManhattanMeghan and Felix home together.  I was a bit bitter about wasting a day.

But I got a spot in my favorite lot, and got in a nice walk.  Then I met a new dermatologist who studied me very closely.  She KNEW what Cowden’s Syndrome was!  And, as she took my medical history about the breast cancer, and the hysterectomy, she said “you look awfully good for the year you’ve had!”  I had to smile.  She understood the rarity of Cowden’s well enough to call the resident in to look at my gums, and what I have come to learn are “classic” Cowden’s marks on my palms and feet.  The resident is studying melanoma specifically, so she let her “double check” and ask me all sorts of questions.  What a treat to not feel like a freak and be in a room with people trying to learn.  Even more of a treat to hear that all is well, and I don’t have to come back for 6 months. 

I made it to doctor number 2 – the endocrinologist with time to spare.  So, she took me early.  An exam, some conversation about the past few months, (through NYUs new system where all the doctors are linked,) some talk about a bone density test in the next few month, a script for blood, and an invitation to return in 6 months.  Wooohoo!  2 for 2!

Early for doctor number 3, the breast surgeon, I had to endure a bit of a wait.  She however, is THRILLED with my healing, and said I don’t need to see her for a year!  (We will do 6 months just so I stagger her with the plastic surgeon, one every February, and one every August – but still! :-))  She asked about my new oncologist, also an NYU doctor, who had contacted her to discuss my case.

Am I starting to feel like there is a competent team of doctors out there?

So, I made exactly the same appointment, same three doctors, February 19th.  How nice to come into the city once and park once, and get three done at once.  Maybe… just maybe… we can start to get our lives back, little by little.

I was home by 2.  Enough time to spend the rest of the day with my family.  Who cares that the black car doesn’t start.  We will take care of that another day…

When I saw that picture tonight I had to smile.  I could have had a really crappy day – but I didn’t.

Because I decided not to!