Blessings, Irony and Tears… March 3rd

Tomorrow marks exactly one year since my Pop moved on to Heaven.  I say that with confidence, because while my Pop was larger than life here, he was forever a humble, faithful servant of God and His people.

They say the first year is the hardest.  I’ll say I’m not so sure.  The first year is, by it’s nature full of “firsts” and figuring out how to do things for the “first” time.  It’s about their first birthday in heaven, the first holiday, or family tradition they are not there to participate in.  And, while this year was tougher than I imagined it would be, I’m not so sure it will be the hardest.

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I should be embarrassed at 43 years old to be lamenting the loss of my 96 year old grandfather.  I should simply be full of gratitude for the years we had, and for the time we shared.  But, that’s not exactly how it works.  You see for 42 years I knew NOTHING other than having him there.  All the time.

All loss is tragic, to different people, in different ways, and at different times.

We lived in the first floor of their house for 15 years.  I kissed them goodnight.  They fed me breakfast.  They came to our school shows and plays.  He drove us to practice.  Watching him love my Grandma showed me so much about how a relationship needs to be nurtured.

At the back door in the hallway was this brick door stopper- a reminder in philosophy and style.
At the back door in the hallway was this brick door stopper- a reminder in philosophy and style.

We vacationed together for about the same span.  Ocean City, New Jersey.  Still to this date some of the best summers of my life.

We moved when Mom married, but that changed little.  We didn’t move far.  At first it was walking distance, then driving.  Pop taught me how to check the fluids in my first car, and how to measure the pressure in my tires.  He told me never to let anyone think I didn’t know what I was doing.  He meant under the hood of the car, and everywhere else too.

He and Grandma drove to college to visit.  We talked on the phone regularly.

SUNY New Paltz circa 1992
SUNY New Paltz circa 1992

And when I was back home, there were trips to their living room.  I usually chose a spot on the floor where I could get a clear view of Pop in his chair.  Come to think of it, I almost always sat on the floor.  I think it was because even when I became an adult, he was larger than life in my mind.  The view seemed more fitting.

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There were stories, about the war, about the firehouse, about church and the bank.  There were stories, and memories and laughs.  There was, “Oh, boy!,” and “Come on!”

There was “Susie,” from a man who spent most of his life in a house with too many women.  We even had numbers… “Susie 1, Susie 2…”  And to the rest of the women, young and old, “Susie” was a term of endearment.

There were stories I heard dozens of times, and ones I only heard once.  Yet, they all blur together now.  How I wish I had recorded them.  Or written them down.

What I would give to hear, “Who threw the overalls in Mrs. Murphy’s chowder?” just once more…

He was always there.  Always.  No matter what was needed, the answer was always yes.  Always.

For a while I thought Pop was the tough one.  I later learned that my larger than life Grandfather was not tough at all next to my little Grandma.  Although, I was an adult the first time I saw Pop cry.  And it didn’t happen often.  Once was when Mom was diagnosed with breast cancer.  The second was during a Memorial Service at church on September 12, 2001.  There were a handful… but, those two I can picture as if they were yesterday.

When we bought the house in 2000 I wanted wood trim.  He was 81.  Every day for months I would come home from work elated as a new piece of trim was placed, around a door, window, or floor.  There is no room in my home he hasn’t touched.  And for that I am so grateful.

He took my husband in as his own.  Immediately.  He took my husband under his wing and let him extract years of knowledge from his brain.  He taught Felix carpentry and wood working tricks, and helped him find confidence in his own abilities.

Felix looked after some of Pop's hand tools
Felix looked after some of Pop’s hand tools

 

My daughter loved Pop.  I loved the way his great-grandchildren rejuvenated him.  It’s hard for me to imagine that just 5 years ago Pop and Grandma were getting Meghan from half days at school.

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Pop brought a smile, love and humor to our lives. Pop brought a smile, love and humor to our lives.

 

There are no words for Pop.  Even as I try and images flood my mind – there are no words to do justice for the influence he had in shaping me into the woman I am today.

I always knew there would come a day when his  body would no longer be with us.  I always knew.  Yet, I could never really have been prepared.

I wish I had listened a little more closely.  I wish I had hugged a little tighter.  I wish I had taken just a few minutes to record his stories.  But, I watched.  And I observed.  And I felt the love.  And I witnessed the compassion.  And I watched a true Christian man support his family to the best of his ability, at all times, and in all places.

I will never forget the lessons he taught.  His influence is etched in my heart.

Maybe that’s why I’m not sure the first year is going to be the hardest.  I’m certain that not a day will go by without thoughts, words of wisdom, advice, or a smile from him.

I will treasure every single moment, even as the years will surely blur them together.

It’s a blessing to be 42 when you lose your grandparent, but it’s a blessing riddled with irony.  If you’ve been lucky enough to be in my position – you know exactly what I mean.

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Oh, and Pop, I could use some extra angel power tomorrow at noon.  I could never do your memory justice without my voice, so lets keep that surgeon’s hand firm?

Love you always…

Ramblings and Random Thoughts

thankful for the difficult

I am not who I was before.

Before there was Felix.

Before there was Meghan.

Before there was Cowden’s Syndrome.

Before there was breast cancer.

I am just not who I was before.

But every change has been part of a process, a transformation that is still taking place.

Perhaps the biggest change has been in my attitude towards others.

I try to surround myself with positive people.

Knowing full well that we all have our moments.

I deliberately seek out tolerant people.

Tolerant of changes.  Tolerant of others.

Life is short.

Judgement brings anger, hatred, contempt.

I have no time.

let go of the toxic

So one by one I have worked to let them go – the toxic ones.

And I cling tightly to the others.

But such transformations affect your whole self – your core.

When I was much younger I had ideas.  I was sure I was right – all the time.

Not so much anymore.

Now, I am sure that I make mistakes.

I am sure that everyone I truly love does the best they can with what they have where they are.

I am sure that everyone hurts.

I am sure that everyone struggles.

I look with a softer heart.

I see things from the other point of view.

Once I might have said that I found others beliefs to be “wrong” or “immoral.”

Now, I respect that others have beliefs and feelings that deserve to be respected – just like mine.

Maybe its the Cowden’s.

Maybe its the stress, or the fatigue.

Maybe its just me – growing up.

I tend to stay out of politics, and I don’t really comment on religions other than my own.

But I know I was raised to love my neighbor.

I know I was raised not to judge.

Really in the end – I just think if we all loved each other as sisters and brothers…

… well maybe more things would make sense.

I am not who I was before-

I am a work in progress.

I am surviving.

I am beating cowdens one day at a time.

I am embracing lessons learned.

I am wiser and more tolerant than I ever hoped to be.

Crying is OKAY here

crying is ok

I cried today.  Yep.  That was it.  Couldn’t hold it in one second longer so I pulled the car into a lot.  Thankfully I was alone.  And I rolled up all the windows, locked the doors – and sobbed.

It only lasted about 10 minutes, but I caught a wicked headache, and a bit of stress release from that good old-fashioned hissy fit. 

I generally make a habit of not allowing them.  I am a look at the bright side of life kind of girl.  I like to remind myself about others who have it worse, and try to put myself in other people’s shoes.  It usually works.

Today the emotion got the better of me. And its OK.

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Work was stressful.

Supporting my dear husband while he works his tail off three nights a week at school is well worth it, but stressful for all of us.

Homework.  Constant.  Ever changing.  Tests that need to be studied for.  Worry about things not yet complete.  Yep, its only 4th grade.  The teachers are lovely.  The stress is really almost unreal.

Today we went to the Urgi center for X-rays of a foot and ankle that has been bothering Meghan since dance class Monday.  She limped for 2 days before I thought – negligent mother should have a doctor take a look.  Sprained.  Takes time.  (Besides the 2 hours out of the afternoon.)

In addition to Cowden’s Syndrome, Meghan has a few other neat things.  One of her diagnoses is “Benign Hypermobile Joint Syndrome.”  Great – if you can manage your flexibility.  If you can’t it leads to all sorts of random injuries.  We keep a really good PT around… just because.

But, if I am really really honest – I don’t think any of these things pushed me over into that screaming sobbing cry I so desperately needed.  I think it was sadness.  Sadness, mixed with raw fear.

Last night I sat with a friend and her 7th grade son at the wake for the little boy who died last week.  I couldn’t for a minute imagine that any more sadness could fit in that one room.  I had a lot of time to think while we sat.  Maybe too much.

I looked first at his family.  Mom and Dad poised, and carefully greeting each on the never-ending line.  Big Brother and Little Sister, beautiful, supportive, composed.  I told you.  They could have been any of us.  And I am sure they never in their worst nightmare imagined they would be standing there.

And I looked at the police officers, standing in honor.  Each one with red eyes as they tried so hard to remain stoic.  Undoubtedly they had kids of their own, or they knew the young man well – or both.

Children.  Everywhere.  Out of order for a wake.  Except this time it was theirs.  It was their friend.  The kid they sat in class with.  Young preteens – so many of them former students.  Faces raw with emotion.  A night they will never forget.

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Tomorrow my friend and I, we will go to the funeral mass.  We will represent our school.  We will try to keep ourselves composed.  But, her thoughts will wander to her boys, and mine to my little girl.  I will think of the “close calls” we have endured, and the many the Cowden’s Syndrome has on the horizon for us.  I shudder at the horror… at the potential.

And yet, if I let it consume me, what life will that be for my girl;  my beautiful, generous, compassionate young lady? 
If I let the tragedy overwhelm me with the reality that at any moment, any of us could be this family, I will lose track of what I have.

If I lose track, if I stop cherishing the blessings I have, I do not give any honor to the memory of this little  boy. 

Instead, I hug tighter.  Try to strengthen the duration of my patience.  Smell the flowers.  Say I love you. Believe in angels.  Remember what really matters.

I can not comfort this family.  My words are useless.  They have to find their way. 

But, I am quite sure now why I cried, and why I had to cry, and why I continue to cry.  I can weep and mourn, with them and for them.

I can hug my little girl, and then hug her again.  I can make memories that matter.

Maybe if we all take some time to show some extra love.  Maybe then we can find a way to keep his memory alive forever.

neverending road

God, hold them in the palm of Your hand – tomorrow, and forevermore.  Amen.

Still waiting…

WARNING – This post may be uncharacteristically whiny and cranky.  It is boring, and lacks any pictures or “fun stuff.”  Maybe its the heat.  Maybe its the start of menopause, or maybe, just MAYBE it’s the WAITING!

So, last year when we were first diagnosed with the Cowden’s Syndrome, the geneticist suggested my daughter and I each be followed regularly by an oncologist who would act as a ‘case manager’ of sorts.  Seemed logical.  We got Meghan set up with a doctor in NYC.  She actually has experience treating “patients like us.”  We thought we were golden.  She ordered the initial scans for Meghan (and even for me) of the brain.  She ordered Meghan’s thyroid sonogram, and her biopsy last November. 

Well, that biopsy was a traumatic train wreck to say the least.  To make it worse, when we spoke to the oncologist about it she was defensive of the doctor she had sent us to.  We moved the biopsy slides to another hospital and she was obviously annoyed.  She is still Meghan’s oncologist of record, but we haven’t seen her in months.

I tried an oncologist here at home.  He listened, the first visit, and the second.  On the second visit he suggested I look into having the remainder of my thyroid removed prophylactically.  He gave me the name of a surgeon and told me to go ASAP.  So, when I called to make an appointment with the surgeon and he wouldn’t see me, I called my oncologist back.  He would not get on the phone with me, and would not call the doctor on my behalf.  I was livid, but found myself an endocrine surgeon who (at least for now) advised against removing the rest of my thyroid.

When I called my oncologist back in late January to schedule my breast MRI.  I was told it was too early.  I reminded them that February marked 6 months since my last, and in fact it was right on time.  They refused to authorize the MRI until late March.  Well, we know how that turned out.  When they called me with the authorization number I laughed at the irony of the whole thing, and told them I didn’t need another appointment.

So, there was the mastectomy in March.  Great surgeons, great catch, great job.

There was the hysterectomy in May.  Again, great surgeon.  Job well done.

The surgeon in May recommended an oncologist in her practice for me.  I called to make an appointment.  I was told to fax my paperwork.  I asked if they could just look in my chart.  It is all shared between the doctors.  No, please fax it.  Ok – 39 pages later – and a huge fight with my fax machine… I got it. 

They called today to tell me the oncologist thinks I should see a geneticist instead.  Gee isn’t that ingenious?  That is how I got diagnosed to begin with.   Dope.  They will look into it and call me back.

I am starting to feel like PTEN mutation is some sort of plague.  What is WRONG with these people?

Which brings me back to my girl.  In February the surgeon(who people travel the world to see) for her AVM said that her next surgery would need to be at Boston Children’s Hospital.  They were not sure exactly when, but July was floated as a possibility.  So we went last Thursday, the 28th of June for her MRI.  After a grueling 2 hours, we left with a CD in hand, and the promise that the results would be at the NY surgeon’s office Monday.

I took the copy of the disk I had, put a cover letter on it, and sent it to the Boston surgeon we met in April, promising him a report would soon follow.

Monday I called the NY surgeon for the results.  I was told the disk hadn’t arrived.  They would call me.  I called again this morning.  I reminded the receptionist that I really was anxious about the results.  It’s on his desk she told me.  She also told me he leaves today for vacation till Monday.  I asked her to be sure someone calls me today.  I carried my cell phone ALL day. 

It’s 10:04.  I guess I will be waiting till Monday.  Really?  I know it could be worse.  It could always be worse, but enough with the lack of compassion, the inability, and lack of desire to follow through.  Enough with being scared of treating us because you don’t quite understand what we have.  Enough WAITING!