What will your verse be?

“…That the powerful play goes on and you might contribute a verse.”

-Walt Whitman (O Me! O Life!)

“What will your verse be?”- Robin Williams (Dead Poet’s Society)

I couldn’t sleep last night. This echoed in my ear over and over again. Dead Poet’s Society has long and forever been my favorite movie, and Robin Williams my all time favorite actor.  But, I must admit neither often keeps me awake unless things are on my mind.

My father-in-law passed away last week.  His funeral was Saturday.  Parkinson’s was ruthless and took its time ravaging his body.  Yet, through the end his spirit never wavered.  During more than one conversation we had over the past few months, he would often say, “God in the front.”  He would tell it to me in English, and in Spanish, but I won’t pretend to be able to even type the Spanish version.   The conversation often led back to the same sentiment.  “Everything went wrong when we stopped putting God in the front.”  He meant in life.  In the world.  In the chaos.  In the anger and the hatred so often around us.  To him it was simple.  It was powerful to hear him explain it.

I realize not everyone shares my faith, and I am ok with that.  What I do wish for everyone is a belief in something that can help you maintain your poise and grace through indescribable agony or just generally difficult times.  Because none of us know what our future holds.  But, as Walt Whitman said, even after we have left this earth, “…the powerful play goes on, and you might contribute a verse.”

What is my father-in-law’s verse?  To me it is everything.  My husband.  My daughter.  Their light.  Their souls.  Their spirits.  Their hearts.  He contributed to this world two of the most spectacular humans.  The powerful play goes on.  He rests now.  But his verse, it has ripple effects.

A very young grandchild of a family friend had a very near miss on a life and death experience this week.  He is recovering.  I spent many hours talking to God about what his verse could be, and how much he could still do here on this earth.  Heaven had enough angels.  It was not the first miracle I have witnessed.

A photo taken by my Dad of a much loved statue. He is forever now one of our guardian angels.

What will your verse be?

I’ve reached a point in my life, where I will not give people the power to affect me negatively.  My older sister has given me this advice countless times, but it is finally starting to register.

Meghan and I have talked a lot about the Nature vs. Nurture debate these last few weeks.  We’ve played what if games with a ton of scenarios.  The thing about this debate is the only truth is, it’s both. Nature and nurture impact who we become.  Sometimes one is more powerful than the other, by no fault or credit of anyone.  But, it’s undeniable that they cross over.  All the time.

Bad things happen.  We can’t always choose those things.

Relationships with both family and friends sometimes sour.  We can’t always fix it.

Health sometimes fails by no fault of our own.

Sometimes there’s a global pandemic, and everything gets turned on its ear.

We often can’t choose what happens to us.

What we can choose is our response to those things.

And often, it is the response you choose that can lead you to peace in the darkest hours.

Life is not easy.  I am not telling you I’m never mad, or sad, or flat out angry.  I’m human.

But, lately I’ve been choosing to spend less and less time in the dark places.  And while I recognize getting to the point where you can make that choice is in and of itself a battle for some, I know that everyone moves at their own pace.  For me I’m at a place where I’m choosing the light.  I’m choosing not to give people power over my happiness.  I’m choosing to put “God in the front.”

I am 4 weeks post op from a major foot surgery, and still non weight bearing.  The other day I went out on my crutches determined to drop a package at the post office and put gas in my car.  Three separate people stopped to offer me help at the post office, and a kind old gentleman insisted on pumping my gas.  I saw so much good.

I choose to think its always there, but it stuck out so much more because I am prepared to seek it.

What will MY verse be?

I’ve been thinking about that a lot.  The truth is, I don’t know.  But, I do know I want to start forming it now.

Having a rare disease, and also just having open eyes and ears has grounded me in the reality that there is no promise of tomorrow on this earth.

What will MY verse be?

I’m not sure yet. But, I’m working on it.  One day at a time.

#beatingcowdens

Here. We. Go. Again.

This will be the year the surgeries outpace the age.  She’s been running a cool average of one a year for quite some time.  Now, at just about 10 and a half, she will get a jump start of her 11th surgery. February 13th. One week.

11-candles

That’s 11 surgeries.  Full on.  Operating room.  General anesthesia. Waiting for pathology.  Sometimes ICU.  Often staying overnight.  Real deal surgeries.

hospital

By my count we have been in 4 hospitals.  We have a system.  Felix goes into the OR.  I stay overnight.  It works for us.

system for surgery

Who has a “system” for surgery?

And that’s not the tests.  The MRIs that early on required general anesthesia, the three thyroid biopsies, the ultrasounds in countless places.  Nope.  Those have their own tally altogether.

My Grandma is 93.  She hasn’t had surgery yet.  Meghan thinks that’s weird.

That’s life with Cowden’s Syndrome.  Healing is “BEATINGCOWDENS.”

Surgery – the new normal.  Organ removal – the necessary means to avoid something worse.

I expected the surgical consult to be on the 6th.  Then my cell phone rang on the afternoon of the 4th.  It was confirming our appointment for the 5th.  The day it was going to snow, and ice and create horrendous road conditions.  And, if I couldn’t make it – it would be another month.

So, I spoke to my super understanding boss.  I rewrote my plans for a Weds. absence instead of Thursday, and after chopping anout 1/4 inch of ice off everything we left home at about 10:30 Weds. morning.

guardian angel

We have created quite an an army of guardian angels, and I called on every single one of them to guide our trip.  They were on point.  Not a hitch.  We were sitting in the waiting room hours before our appointment.

I got to develop the pit in my stomach as the young superheroes and their parents spent the afternoon on chemo pumps.  Pushing time.  The beautiful bald two year old in the blood room was a reminder to mind my blessings.

I had been under the impression I was coming to discuss IF surgery was a good option.  I had already decided I was unsure how I felt about whatever the poor pediatric surgeon at Memorial Sloan Kettering Cancer Center was going to be able to tell me.  But, I was a bit shocked when there really was no “if” in the room.

Her neck was examined.  Her notes reviewed.  I was reminded again of the failure rate of Fine Needle Aspirations for the thyroid.  (Close to 10% in case you wanted to know.)  I asked again what made her a good candidate for a complete thryoidectomy at 10.  The nodules. Consistent growth.  Vascular feed.  The tickle in the throat… It’s time they said.  It’s time.

nodule

I lost my thryoid at 20 in 1993 to a condition called “multinodular goiter” and “Hashimoto’s thyroiditis.”  They both stink.  But now I find myself wishing for such benign conditions to be the final result of the pathology we will receive 5 to 7 days post op.

Everything is moving faster here.  I don’t like it.  Not one bit.  I am a numbers person and these stats make me ill.

But, onward we go… because what choice do we have?

There will be work.  Follow ups.  Thyroid hormones to balance.  But we will figure it out.

She laughed today.  A lot.  Maybe she is relieved without the uncertainty.  She knew.  We all knew.

Saturday I will sign her up for her second year of CYO swimming.  The surgeon says only a week out of the pool.  And her scar should be half the size of mine.

never never give up

refuse to sink

Two days off of school   Then a vacation.  Kind of.  A “Stay-cation.”  Daddy will be home too.  Some movies, and maybe even some resting.  Maybe some healing for all of us.

She’ll be back in full effect.  Ready to rock “RARE DISEASE DAY 2014.”  Denim ribbons.  T-Shirts.  Movie night.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

A girl has to have SOMETHING to focus on.