The Calendar …

My birthday is a tricky time of year. This week is emotionally charged always. Emotions are right at the top. I simultaneously love and abhor my connection to dates. It is a blessing and a curse that I constantly strive to strike balance with.

I never thought much about my birthday growing up. There were often sleepovers and cake with family, but I never thought too much about it. Not about the day, or about the blessings of family, friends, and gifts galore. Somewhere in my youth, I thought it would last foever. I was always taught gratitude, and have penned my own thank you notes from a young age. But, I meant the matter-of-fact way things just happened. My mom worked 2 jobs. She worked hard all the time. But, she made time for those things as if it was effortless. I am pretty sure I might have missed some thank yous to her along the way. She never skipped a beat.

As a teen things changed a little. Our immediate in house family grew with the additions of Ken and little sister Kathi. Older sister Lisa was at college. But, still, I never gave the day much thought.

My cousin Meghan was born in May of 1985 when I was in 6th Grade. She was the absolute apple of my eye. She was the first child in my large extended family that I was ever old enough to babysit for. We spent a good deal of time together.

Meghan’s leukemia diagnosis came when I was a freshman in High School. The next 4 years for her were a perpetual whirlwind of remission and relapse, treatments, bone marrow transplants, and smart, silly kid time. She was wise beyond her years and loved on her little sister with everything she had. She loved our Grandma’s dog, and so many people loved her.

As a growing teen, I wanted nothing more than to be tested as a possible bone marrow match for Meghan. I was turned away, even as a first cousin, and told to revisit the possibility when I was 18.

The summer before Meghan died she gave me this picture after an afternoon at the local Children’s Museum. It hangs in my house still.

I left for college in August of 1991. I called and spoke with her as often as I could in the “pre-cell phone” era. And then our stories above became forever intertwined on 11/12/1991. A call to my dorm, on the morning of my 18th birthday, brought the news that Meghan had gained her angel wings. I was never going to know if my bones held the marrow that could have saved her life. That was a bitter pill to swallow. I was broken-hearted as I headed home for formal goodbyes, but I was buoyed by the fact that no matter how many years went by, her passing, and the celebration of my birth would be remembered the same day.

I never lost the feeling of connection to this spectacular, tenacious 6 year old whose ability to converse with those well beyond her years, to express her thoughts, and to bring joy to those around her was utterly epic. I never ever forgot New Year’s Eve together, setting all her dolls out on the couch, or the MILLION times we watched Lady and the Tramp.

Meghan was still in my heart in the summer of 2003 when I asked my aunt and uncle if I could name my child after theirs. That is Meghan’s name story. She was named after a warrior whose spirit she possesses. Their struggles differ but their giant hearts and no-nonsense speech sometimes are intertwined in my memories.

Our Guardian Angel wears a gold ribbon. The power of this has also not been lost on me. Childhood cancer is it’s own kind of hell, for the parents and the children. We, as Cowden’s Syndrome patients have astronomically high cancer risks. Ones that can get into your head if you’re not careful. But we have what is not given to most. We have a warning system. And through that warning system our cancers, if they occur, can be easily managed most often. We have a gift others were not given, even in this messy road.

The story of our Meghan has had so many twists and turns these last 18 years that many blend together.

Through those years we said goodbye to many grandparents. Among them, my father, Ken’s father, my mom’s father, and my dad’s father. That group of veterans were life-shaping as well. And, with Veteran’s Day being this week too… sometimes the proud, and the grateful, and the sad get mashed together.

And November 10th, the birthday of the US Marine Corps fits right in here as well. I do not profess to fully understand, but watching my Dad reach out to every Marine he was still in contact with on 11/10/2014, a month before cancer stole him, it imprinted on my heart.

I’ve never been a big fan of fall. Or, maybe I was when I was a kid. I don’t remember. But, somehow the darkness and the dreariness and all the memories seem to feel heavy this week.

So I try to think of the joys that have intertwined with the sorrow. I think of 11/12/2014 when Meghan received “Kid of Achievement” award at a very special ceremony.

I think of my little second cousin Mackenzie, my birthday twin, just a TON of years later, brought into this world no doubt with some careful guidance by Angel Meghan and some others, whose memory Mackenzie’s mom and I both hold dear. That precious girl, born after tragedy had already touched her life, has the most magical smile. Oh, I wish I saw her more.

Angel Meghan and Cousin Kim

And last year, we took the day as a family of three and had a delightful senior photoshoot for our one and only, also on 11/12.

Photo Credit Natalie Licini @Jrevele
Photo Credit Natalie Licini @Jrevele
Photo Credit Natalie Licini @JRevele

All of these memories are somehow connected to this week. And as I think about my birthday I am grateful for another journey around the sun. The numbers don’t flip me out. I will scream loudly and proudly that I am 48. I am a mother, a wife, a sister, an aunt, a cousin, and a cancer survivor. I am grateful.

This year though, on the 30th anniversary of the passing of Angel Meghan, I pause a little extra.

Some people come into your life only for a season, yet they leave an imprint on your heart that lasts a lifetime.

As I head into my 49th year, I am grateful for those I have loved and lost, and for all I have learned. I look forward to more adventures. I hold my dearest close. I shed the nonsense. I avoid the drama as best I can.

I am far from perfect. Perhaps my biggest life lessons come from basking in that imperfection, embracing those I have loved and lost, and those I still love today. Taking the lessons learned from all and carrying them forward.

Time waits for no one. Semester one at college is almost in the books. My girl is where I was the year my Guardian Angel left this earth. 30 years since I started college. Life keeps moving.

Honor the lost. Embrace those that are near. Live in gratitude and be full of grace as our God is to us. Lead with compassion and a kind heart.

May the fall be full of blessings for you.

We remain #beatingcowdens.

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.