Reflections

learning

Reflections.

One of those multiple meaning words that seems to get tossed around a lot this time of year.

Reflections for me are necessary as a part of who I am.

As the new year approaches, I find that I hear the same sentiment over and over.  “2015 Will be a (great, better, good, fabulous…) year.”  Often I hear people say, they are “due,” and it’s their “time,” or their “turn.”

And that’s not to say I don’t know countless people who have suffered gross misfortune.  And it’s certainly not to say I don’t wish them all a break.  It’s just I’m not sure what difference a minute makes, really.

I am reminded of the conversation I have with my youngest students several times a week.  December to January is a matter of a minute.  One to the next, and the calendar changes.

calendar

I guess it’s none of my business this notion that the new year will make things better or different.  But, I just don’t really buy it.

I like the idea that the year starts over again.  I have always liked that about teaching – the ability to start fresh every September.  But to me that is a more authentic change than New Year’s Day.  At least in school it IS a new year, new schedule, new students…

Maybe it’s the fact that the last few years feel all drawn together in my mind.  And they haven’t been all bad.  Just quick.  Fast-paced.  And maybe a little tiring.

Truth be told, though, there is no real indication that 2015 will be any different from 2014, or 2013, or one of the rockiest of them -2012.  The change of month and year will not alter many of the things currently set in place.  There is Cowden’s Syndrome to fight.  There are relatives and friends struggling with health issues.  There are things that just are.

But, what will remain the case in 2015, is currently the case right this moment.  I will wake each morning, put my feet on the floor and find something good to focus on.  I will shake off the pain.  I will be a role model for my girl.  I will eat the most nutritious food I can find, and share my passion with whomever will listen.

question

I will question doctors.  I will question everything and get the best care I can for my girl.  I will adore my husband, and love him the way he loves me.  I will follow the lead of my daughter and strive actively to help as many people as we can.  I will work on staying calm, and not sweating the small stuff.  Because that is how I get through every day.  All year.  And some days when we are very tired, we will just be.  And that’s ok too.

Although, I’m not beyond reflecting on the last 12 months, in the year we often dubbed “The year that everything broke…”

reflection

I spent January sorting through my father’s apartment after his death in December 2013.  It was a whirlwind that ended December 4, 2013, when he passed from a battle with pancreatic cancer, and the carry over was evident in my dining room for the early part of 2014.  I made phone calls, wrote letters, and did what I could to address inquiries and settle affairs. And still a year later there are pictures to be sorted and water marked… soon.

dad and meg halloween 2013

In February Meghan’s thyroid finally gave out.  And was taken out.  In the middle of a huge snowstorm that led us into the Ronald McDonald House in Manhattan the night before.  And we spent a few weeks with the largest part of the recovery, which included a medication reaction and another overnight hospital stay.  Almost a year later her Synthroid dose fluctuates every 6 weeks and doesn’t seem close to being regulated.

Trying to distract the pain away.
Trying to distract the pain away.

There was the identity theft that targeted me in March and got right into my bank account.  There were headaches, and police reports to follow, but they had nothing on the fraudulent tax return we learned had been filed in April.  Hours and hours, and months of waiting.  We have it all fixed.  Almost.

identity

The spring was a constant juggle of pain.  An indicator that the thyroid removal had altered the balance in the body as far as I am concerned.  That theory was further confirmed when Meghan spent a week in the hospital in May with severe gastritis.  It was the culmination of a spring where things just seemed to be getting worse.  We met a gem of a gastroenterologist who was able to settle a few things, but after an endoscopy we left with news of severe esophageal damage.  Her medication was blamed.  The same one that had been helping us manage her constant pain, and had been diffusing the activity of the AVM in the knee.  We also left with a diet exponentially more restrictive than the one she was already on.  Ironic maybe that the fryer we had, had broken the night before we went to the hospital.  We certainly didn’t need THAT anymore.

And then we said goodbye to the Saturn.  The 1996 Saturn that was the “extra” car that was so handy to have, was towed away in the spring after a few failed attempts to fix what surely was the start of a failing transmission.  We are a one car family for now.

saturn 1996

Even in the “happiest place on earth” Meghan’s stomach “broke” again.  Scaring the heart out of us, causing a visit from a Disney doctor for which I am still trying to coordinate payment from the trip insurance company.  Fortunately it didn’t derail our trip.  But, it reminded us that everywhere we need to have our guard up.  Everywhere.

TheHappiestPlaceonEarth_thumb

And our Allie Girl in July had 5 teeth pulled in quite the procedure of a surgery.  It didn’t take her long to start eating again, but my nerves, and my visa were permanently affected.

There was the pool that kept having a “little” leak.  Until it was consistent enough that we left a hose in the pool.  Until I finally bit the bullet and called for a leak assessment.  And just like that the pool was being emptied for its liner to be replaced.  At least it will be ready for us in the summer.

And the bay window.  The one that developed some dry rot after a call to the window company 2 years ago led to a ton of red tape.  By the time they came to see if the damage was covered it was too late.  And just like that we were replacing the bay window we had put in 14 years ago.  And once you cut a hole into the wall… It was like a bad version of the book “If You Give a Moose a Muffin…”  Almost the whole house got painted as Meghan moved her room upstairs, and we cleaned and sorted and purged…

bay window

The very end of August my Grandma, Dad’s mom, had a stroke.  And we hoped and hoped that it would get better.  We visited, and chatted, and spent as much time with her as we could.  And she went from the hospital to rehab, to the nursing home, and declined every step of the way.  She remained pleasant and agreeable until she passed away October 22nd – less than a year after we lost my Dad.

The first "great grandchild"
The first “great-grandchild”

Early in September Meghan fell and there was a stress fracture in her foot just in time to start 6th grade and a brand new school.

meghan boot 1

And in the fall the washing machine gave up, and a new one found its way into the basement.

In November Uncle Jerry, my Dad Ken’s brother passed away.  Just shy of 60, he was taken way too soon by cruel cancer.  GGPa, his Dad, was taken from us in June of 2012.  Too close.  Too much.  Too sad.  Just wrong.

And as I traveled home from the funeral in Vermont I went to pick Meghan up at swim practice.  And as she walked out of the locker room she collapsed.  The pain in her knee was too much.  Emergency surgery the next day at Lenox Hill revealed a pea size hole in the artery of her right leg at the AVM.  And what we saw coming 6 months prior when she stopped the medication because of the gastritis had happened.  The AVM was back in a foul mood.  50ccs of blood drained from her knee joint.  After 5 procedures in there, at only 11 the knee will never be what it should be.

This is about 50ccs of water - roughly the same amount of blood that filled her knee joint.
This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.

We spent Thanksgiving at home, just the 5 of us.  Felix, Meghan and I, and Allie and Lucky.  We decorated for Christmas, while Felix made a fantastic dinner.  And it was ok to be housebound.  Together.

There had been too many funerals this year.  Too much loss.  In my immediate and extended families, and the families of friends.  We needed some time to enjoy our innermost circle of 5.

By that time memories of my Dad’s passing a year earlier were taunting me.  Maybe I looked the other way at the earliest signs that Allie didn’t feel right.  Maybe it wouldn’t have mattered.  But, we got home from celebrating cousin Kim’s wedding, and it was evident that my Mom was even worried about Allie.  A walk the next morning with Felix where she gave up mid way prompted a vet visit that Sunday.  After x-rays of her belly that were inconclusive, and some medication for pancreatitis that we were pretty sure she didn’t have, we took her home.  We diligently gave her medication and prepared chicken and rice as directed, but by Tuesday she wasn’t eating.  And THAT was NOT like her.  So I took her back on Wednesday hoping for a new medicine and grossly unprepared for the vet to tell me it was time for her to be put down.  So in between tears I gathered my family and waited.  I held Allie for hours while I waited for them to arrive so we could all say goodbye together.  December 10th we lost a good friend, and a key player in our family of “5.”

allie13

 

I ended the year breaking the vacuum the day before Christmas Eve.

And as I sat to reflect I remembered that still in the chaos that sometimes ensued, never were we to be defined by Cowden’s Syndrome.  We are to be defined by other things.  The ability to;   persevere, love, lose, cry, laugh, sing, smile, appreciate, endure.

Because you see Cowden’s Syndrome is with us every day.  Of every year.  For the rest of our lives.  But it can not BE our lives.

However, it has taught us some good lessons.  Life changes quickly.  If you aren’t paying attention you might miss it.  Don’t be complacent.  Ever.  And be as prepared as you can while never making firm plans.  Cause life is not designed for “firm” plans, but better suited for goals.

And don’t wait to make those goals.  Or to carry them out.  You don’t need a new calendar, or a special occasion.  Just do it.

Treat each day as a gift.  Be the best YOU that YOU can be, all the time.

Be honest.  Don’t be afraid to love deeply.  The pain of loss is horrendous, but without that ability to love deeply there would be a good deal of much needed compassion missing from a world that is already struggling.

The best thing about reflections, is they encourage you to continue onward…

We are still now and forever Beatingcowdens…

one-ste-at-a-time

 

 

 

 

 

Pain is temporary….

At least I hope so.

I vaguely remember a shirt my older sister used to wear when she was swimming.  The message was something like this.

pain is temporary

It was motivational, meant I am sure to remind the young swimmers that their fatigue from grueling practice would translate into race times that would forever keep them proud of their accomplishments.

And in that case, I hope the pain, the pain of lap after lap, translated into successful meet times that led to a gratifying feeling of pride.

But what about when it’s not that neat?  What about when you can’t sort it out in a package, or tie a bow on it?

There is emotional pain.  The empty pain of loss.

As I type, I have two lit candles on my desk, celebrating the 60th birthday of my uncle in heaven.  The pain of his wife, his children, his mother, my dad, (his brother,) can not be explained.  The loss is raw.  The pain is an open wound.

I think of my college roommate, and her nephews and sister-in-law preparing for Christmas without their 36 year-old father.

I think of the loss of my Dad, just over a year ago, and the flood of memories and seasonal connections complicating my every thought.

I think of the loss of our beloved Allie Girl last week.

I think… and I think.  And I know how badly it hurts.  And I know we are so far from alone.  I am grateful not to be able to imagine the depth of the pain some feel.

pain is real

Pain is temporary…

There is the pain of anxiety.  Very real.  Depression.   Equally crippling.  I’d be lying if I said I haven’t battled with both my whole life, amped up by this Cowden’s Syndrome torment under which my girl and I will live forever.

Try as I might, the worry is stifling.  The sense of urgency all the time is exhausting.  There is little room for error.   Screenings, medications, lab work, surgery.  All scheduled with precision to conserve sick days and minimize missed school.  Except when I can’t.  Like when it’s an emergency.  Then we just roll with it.

The anxiety weighs on my girl as well.  11 years old, trying so hard to be normal, and to fit in.  But, the reality is there is no “normal.”  So she fakes it as best she can, blessed to be surrounded by some spectacular kids.

But, she gets mad.  Mad at the doctor, mad at her knee, mad that she takes two steps forward and three steps back, in this poorly choreographed dance she is forced to participate in.  Mad that she can’t be “the best,” because her own best is unacceptable to her.  And some days when she is extra mad, I wonder about the thyroid.  Cause its absence affects all things.  And this week came the phone call that the numbers have increased 400% over the last 3 months again.  So we continue to raise the dose of a medication that I don’t think does a damned thing for her.  We play the game while I search, frantically for someone to “get it.”

Pain-can-change-you

Pain is temporary…

Except when it’s chronic.  And it involves every single minute of every day.  And the one medication that does work is off-limits.  And the surgery to plug the hole in the artery that was likely provoked by the absence of THAT medicine, causes and abundance of scar tissue and this feeling of a lump the size of a cashew or two exactly where the knee should be able to bend.  And you have no way of knowing if its going to get better, or happen again.  Any minute.

And the pain, well if it was only in your knee it would be better.  But it’s in the shoulder, and the neck, and maybe it’s caused by the feet over a 1/2 size off, or that slight curve in the lower spine, or something else no one cares to figure out.

So, you gather your spoons.  And you borrow a few.

keep-calm-and-save-spoons-2

And you press on.  Through sixth grade and onto the principal’s honor roll, and through student council, and drama club, and fundraising activities, and swimming your butt off.  Cause what choice do you have?

hopeful-spoon

Pain is temporary…

We talk about injury pain, vs healing pain.  Tonight’s pain counts as the healing type cause it was generated largely by exercise.  This pain is movement in the right direction.  Swimming heals the soul.

You have to find what heals the soul, or you will lose your mind.  There is no other way.

Pain is temporary… cause it needs to be.

You have to find what brings you peace.

Two weeks ago on December 4th, I chose this.  The butterfly breaking out of the cocoon.  Free forever.

photo (6)

I miss my Dad.

My heart is full.

But we press on.  Because pain is temporary.  Even for all of us in the middle of the worst pain of our lives.  The sun will shine again.

Channeling that energy into raising awareness, fundraising, and helping those whose sun hasn’t come back up.

hero

Jeans for Rare Genes Fundraiser  (Click here to support our fundraiser for the Global Genes Project and the PTEN foundation)

We are living real life, AND

WE ARE BEATING COWDEN’S TOO!

Grandma Gen

My friend in Australia reached out this week.  My “blogging buddy” sensed the silence meant things had gone awry.  Continents away; she knew.  She was right.
Writing is my release, my sanity, my way of keeping Cowden’s Syndrome and the fast paced, quick changing world around us in check.  Writing keeps me “honest” as they say.
And over the last two weeks there have been things to write about.  There have been CT scans and fears, and mishaps. and pain, and hunting down doctors and bickering over erroneous bills. But, for the last few weeks most of those things have taken place hastily, in transit.   I had some place else to be.

On Wednesday I got the call that Grandma Gen had died.

And as I sit here more than 48 hours later, I am sure it hasn’t sunken in.  Not really.

Even as I look out the windows at the changing leaves, and I am brought back to last October, as Dad was getting sicker, quickly, I can not really process.

DSC_1026
Gone too soon…

I sometimes feel like so much goes on so fast that sometimes the brain just has to protect the heart for a while.

I have an odd connection to numbers, so it struck me that Dad had died on a Wednesday too.  46 weeks ago.  And as we approach what was sure to be some challenging anniversaries, my family will gather this weekend to remember again, a life well-lived.

Wednesday was my cousin Christie’s birthday.  23 years old.  I so hope that she found her cake.  Because Grandma would have never let a party pass without some cake.

Mom Bday 04b

Wednesday was my cousin Kim’s birthday too.  30 years old.  One to be filled with joy.

I know girls.  I really do know.  A piece of my heart died forever on that November day, my 18th birthday when we lost Angel Meghan.  And last year, on my 40th, Dad and I went to the VA for a really tough appointment.  And then to get the legal papers signed.  And as he signed he said, “It’s your birthday!”  And I said, “There’s no one I’d rather spend it with Dad.” And there wasn’t.  And I don’t regret any of it one bit.  And in the end, that is what matters.  No regrets.

So to my cousins whose birthdays will never quite feel the same I can tell you to focus on the connection.  We all got a really strong angel in Grandma – but you girls… well you have something no one else has.  I’d love to tell you “Happy Birthday” doesn’t still flip my stomach a bit, but I don’t much like to lie.  What I can tell you is focus on the “happy” that was Grandma.  Eat your cake.  Always.

And Kim.  The wedding will be December 6th.  The shower is tomorrow.  So compassionate. Not just to Grandma, but to everyone.  Something unfair about the timing of it all.  But, I can tell you I have a good feeling heaven will be tossing SHOWERS OF BLESSINGS your way.

It’s almost impossible to sum up my Grandma Gen to someone who has never met her.

DSC_0995

Grandma was beautiful.  Not only in a physical sense, but inside as well.  One of the stories I never tired of hearing was the one of her and Pop’s first date.  And because there is no way I could do it justice here, I will simply tell you she told it often, and rarely did a detail change.  Decades after Pop’s passing, and 60 or so years since that date, her eyes showed the love in her heart.  And even in her last weeks whenever we talked about Pop she would say, “God gave me such a GIFT when He gave me your grandfather.”

They were parents.  Busy parents.  Grandma was the Mom to nine children – 8 boys, and a girl.  Most of us shudder at the thought of trying to raise 1, or 2, or 3 children.  For Grandma there were never enough babies.  Each one was a true gift from God.  So for 20 years she had her own, from my Dad to my Uncle Gerry, and everyone in between.  And then, just about three years after Gerry, my older sister Lisa was born.  There was never a break.  The house was always busy, and happy.

siblings

 

DSC_0670

 

All nine (1 of 1)
They took this shot as often as they could…

 

As a young child, the cousins just kept coming.  There was always a baby to play with, and Grandma ALWAYS had a smile on her face.  I believe between 1980 and 1990 – the core of the cousins, 13 if I have the numbers right- were born.  Some just a few weeks apart.  When all was said and done she boasted 27 grandchildren.  There were busy Christmas Eves on Kingsley Avenue for a long time.  There were swims in the pool, and dogs to guard the door instead of keys for the lock.  There were trips to “Bud’s” for milk, and always a sweet treat.  There were green mashed potatoes on St. Patrick’s Day that at the time just amazed me.  The little things.  So many, really, are the big things.

Older Grandkids (1 of 1)

 

When I got to call Grandma and tell her that she was going to be a Great Grandma, she let out tears of joy.  She was thrilled beyond words. 2003 was a good year – 2 grandchildren and 2 great-grandchildren.  9 more great-grandchildren have followed Meghan and Luke.  And she never resisted an urge to tell friend and stranger alike about how proud she was, of all of us.

The first "great grandchild"
The first “great grandchild”

Maybe one of the most special things about Grandma was that everyone had their own “one of a kind” relationship with her.  When you spoke to her you were the most important person in the world.  And we were all perfect.  In case the rest of the world missed the memo, or noticed a few faults along the way, you must have been mistaken.  Each of her children, her grandchildren, and her great-grandchildren could do no wrong.  And while in reality, we know we are all far from perfect, there is no denying that that kind of unconditional love felt awfully good.

DSC_0511
Uncle Paul and Aunt Rita’s 25th Anniversary

Grandma had a firm, strong belief in God, Jesus, and she adored The Blessed Mother.  She would often tell me, if you REALLY needed to get a prayer answered to pray to The Blessed Mother.  She’s get word to Jesus, and He’d never deny His Mother.

Motherhood was her core.  From her days playing with her baby dolls she prayed to be a mother.  And boy were those prayers answered.

And through the years as the family grew, and changed, Grandma could be found smiling somewhere.

Mom & Gerry O Johnny & Barbara (1 of 1)
Grandma with Poppy Hollywood and Barbara and Gerry O
Grandma and Aunt Shirley
Grandma and Aunt Shirley

I can say with confidence, that for all the years I knew my Grandma she never acted with malice in her heart, and always had the best of all intentions in all she said and did.  Somewhere along the line I became a middle aged grown up, and I’ve picked up a few things.  That pure heart, that is what defines people.  At the end of the day it is the knowledge that they did the best they could with what they had where they were at all times that really separates the pure in heart.

And as sure as Jesus said, “Blessed are the pure in heart, for they shall see God…”  I have no doubt my Grandma was welcomed into Heaven-warmly.

Because even after the stroke that was to be the beginning of the end, she was the most polite, well-mannered patient you ever could have imagined.  In the hospital, in the nursing home, to anyone who did anything for her, “Thank you.”  “They’re so good to me.”

Even as she waited for visitors, she stared at the picture of her children on the steps at Dave and Margie’s wedding, and she spoke with pride about each of them, and how their hugs warmed her soul.

DSC_0141

Sometimes when I was visiting her alone she would tell me about the places she had been.  Of course these were voyages of the mind, but I listened, as we all did, with intent excitement. These last few weeks were interesting, because you truly never knew who had been in before you, or who came after you, but we all had our times to listen and chat.

She and my brother used “FaceTime” so he could chat with her from Texas, and she sure knew it was him, somehow coming through my phone.  Shane may very well be the first Thompson male to have his facial hair approved of by Grandma.  He booked the first dance with Grandma at Kim’s wedding.  And without fail as the call would disconnect, she’d say, “Shane, I love that kid!”

And there were days my Dad must have visited with her when she was lonely, and her brothers, and some others who gave her comfort, because we heard all about them too.

Even as her mind took her farther from reality, she smiled.  She regaled us with tales of how we were all going to gather for family dinner.  She told me one day she was buying 2 houses to there would be enough space for all of us.  She would talk about the family being close, and how my cousins from Washington were coming with their families too! (We can dream!)

So this weekend we will gather together again.  This time for the first gathering without our matriarch.

And we will spend Saturday showering Kim and Nando with blessings for their upcoming wedding.  Because Grandma, who believed so much in weddings, and marriage, and love would have had it no other way.

Then Sunday we will get together in Harmon Funeral Home again.  And in Irish fashion we will have a loud celebratory wake for a woman who lived a full, happy life.  And we will look at pictures and tell stories, and we will laugh and smile.  Together.

On Monday we will travel, and bring her back to Pop.  21 years later they will be reunited again, a love story never ended, simply interrupted.

Together again - together forever
Together again – together forever

 

Then the real work begins. It’s our job now.  We need to stay focused.  We need to stay connected.  We need to stay together.

For so many of my cousins Grandma Gen was their last grandparent.  I have a guilty amount of good-fortune, and celebrate three grandparents still.  But. the significance and the importance is not lost on me.

In the end it is really only about one thing.

In our loss, we must remember their freedom.  In our loss, we must remember the gifts they left behind.  In our loss, we must remember they are never truly gone if we keep them alive in our words, thoughts and actions.

I miss my Dad.  I miss my Grandma.

Their physical bodies are gone.  Their energy, their spirit, their love remain.

Grandma Gen we’ll do our best to stay “on the right path,” as you so often said.  And at every dessert table there will be an extra piece of cake or a “dollie” shared for you.

Enjoy Pop, and Daddy, and Angel Meghan, and Bo, and all the rest of those you love so much.  No worries.  When the time is right we’ll all be together again.

Until then, it’s remembering – the Irish way.

Rest in Peace Grandma Gen!

May-the-Road-Rise-to-Meet-You