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…

Freedom IS NOT Free!

When I taught Social Studies I most enjoyed the curriculum that allowed me to teach about the United States.  It made me sad on Friday to overhear conversations about this upcoming weekend, and never once feel there was an understanding of Veteran’s Day.  When I was a fifth grade teacher the children wrote about their “Rights and Responsibilities” as American citizens.  That was a long time ago.

I was raised to answer the question, “Where are you from?”  with, “The United States.”  Growing up, that aggravated more than one person who was looking to learn where my ancestors had traveled from to arrive in America.

Precise language.  They learned to ask the question they wanted to know the answer to, or not to ask.

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I am the proud daughter of a Vietnam Veteran, and the grateful granddaughter to 3 WWII veterans.  Although 2 of my grandfathers are no longer here with us in body – their spirits remain strong in my soul.

All of the men I mentioned served in war.  All of them returned home to us.  All of them shaped my life and helped me become the woman I am today.

veterans day pop thompson

Pop T. came home after serving in Iwo Jima, to raise a family of 9 – 8 boys and a girl.  Visiting their house as a child was certainly wildly fun.  My father is the oldest child, and my sister and I were the first grandchildren.  We enjoyed time with Pop who had left behind a promising athletic future before his service in the war.  He had time to impart much of his wisdom before he passed in 1993.  My only sadness is for my many cousins that never got to know him the way I did.  There is no denying his legacy.

veterans day ggpa

GGPa came into our lives later when Mom married Ken.  I was 15 years old, and my sister was 18.  Ken wrapped his arms and his heart around both of us, and truly made my world a better place.  At the time his parents, who came to be known to us as GGPa and GGMa had no grandchildren of their own.  I was so flattered that they accepted us and enveloped us with such love.  GGPa is gone over a year now, but in our years together I got to know the definition of “gentleman” through him.  He was a positive influence, a pleasure to be around and a treat to talk to.  He is missed and loved and appreciated.

veterans day pop and gigi

Pop G. is one of the most amazing men I have ever had the pleasure of knowing.  The fact that I will turn 40 next week, and I can recount my day by saying “I spent some time with my grandparents,” in and of itself is amazing.  Not to mention  that they are 93 and 94 – living in the second floor of their own home.  I grew up during my most formative years, in the first floor of that home.  I had the daily love and support of my grandparents.  When I speak of Pop, and the influence he has had, even I am at a loss for words.  His faith dictates how he lives.  He loves God, his family, and all others before himself.  I am so blessed to listen to his stories, and to revel in years of beautiful memories, while still making more!

veterans day dad

And then there is my father.  The free spirit whose love of adventure has guided him down many paths in his life.  We have conversations that always leave me deep in thought.  He has experiences that are broad, from far and wide.  Most recently in the last few years that road led him right back closer to home, and I have been so grateful to have him just around the corner.  My girl has gotten to know him, and always remarks about his smile.  He tells her he smiles because of her.   His genuine heart, and the depth of his love have made him the person he is today – one I am truly glad to have in my life.

There are children who seek desperately one male influence in their lives.  The amount of time I have been afforded with each of these men is a gift.  I will not squander the knowledge, and life lessons I desperately try to soak up like a sponge.

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Each of them saw things I do not dare imagine.  Each of them lived experiences I will never understand.  Each of them sacrificed, time, love, health, and so much more.

I can only imagine that at some point they have all wondered why they got to come home when some of their comrades did not.  And, while I can not ever know the plan – I can, on my knees thank God for returning each of them safely so they could live their lives.

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Not everyone is as fortunate.

I have received a gift too great to squander, too valuable to toss aside, and too personal not to wear it close to my heart each day.  For it is because of them that I am.  It is because of them that I have learned poise, strength, and grace under pressure.  It is because of them that I know to love so deeply.  It is because of them I have been blessed with my daughter, unique, RARE, and determined to change the world.

Stand for the Pledge of Allegiance and the “Star Spangled Banner.”  Think about the words.  Feel them in your heart.  Educate yourself.  Learn about the sacrifices made to make this country.

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You may want to complain that life isn’t perfect.  You may want to complain about the country.  And while I can agree that many things are not as they should be, remember what my grandfather said to me, “The Constitution is an extremely well-written document, the flaws are in its execution.”

And regardless of your political stance on any war ever – support the soldiers.  Those men and women are there out of a selfless love of country.  They are making sacrifices far beyond what we see and what we know.

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Precise language.

I am PROUD to be an AMERICAN, and even prouder to be related to so many who loved this country enough to fight to defend the principles it was founded upon.

Veteran’s Day. November 11.  FREEDOM ISN’T FREE.

veterans day 6

“Count Your Many Blessings…”

Count your many blessings, count them one by one.  Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon.  I remember as a youth singing the song in church.  I must have sung it plenty of times, because the lyrics are stuck in my subconscious.  And, as things int he subconscious tend to do – they often pop out at just the right time.

rare supermoms

 

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad.  25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

Mom and Ken anniversary

 

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen.  Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband.  I was greeted by my beautiful daughter and lots of hugs and kisses.  Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad.  We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew.  Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again.  How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life?  How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted.  That song started in my head.

“Count your many blessings…”

HappyMothersDay

I thought of the friends I have who are desperate to be mothers.  The friends who had to struggle to have the children they have.  The friends who have miscarried, and friends whose young children live in Heaven.  I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago.  I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired.  How lucky am I to need a list to shop for Mother’s Day Cards?  How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone.  But, I am aware that those years will come all too soon.  For now – let me run, and visit, and hug and chat.  Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight.  I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow.  A rampant virus, and her rotten immune system are not a good match.  She won’t plant with her science class the way she likes to.  She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease.  A day of  differences and disappointments.  A day she will handle with the same graceful smile she uses for every other aspect of her life.

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My daughter is the one who reminds me to count my blessings.

And, oh do I have many!

 

“Keep Swimming!”

There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.

I saw this today and it made me think of some of the people I have met over the last year.  Some of them don’t talk to each other any more, but I talk to them all.   It’s just who I am.

Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.

This has been a tough week for me.  It happens to the best of us.  I know I am usually pretty positive, but this week it has been harder than normal.  So when I shared some of my struggles she said to me…

I thought about it for a while.  And you know what?  It made perfect sense.  She has had plenty of struggles of her own.  Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group.  She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.

I think, to some extent that is what we have to do.  Look it in the face, whatever it is… take  a deep breath and keep on swimming.

Today is my birthday.  I turned 39.  And I am proud to say it.  I have no intention of staying here either.  Next year will be 40, and so on and so on.

But with my birthday comes a flood of emotion.  This is just over a year since my Cowden’s Syndrome diagnosis.  It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.

Keep Swimming…

It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS.  I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed.  Old familiar sweaters need to be replaced.  Nothing is quite where it used to be.

Keep Swimming…

It has been six months since the  complete hysterectomy.  The one Cowden’s Syndrome called for – way before its time.  So as my body celebrates 39 – my hormones clock in somewhere around 55.  And with no hormone replacements in the cards, we are learning to get used to each other.  Not uncommon for me to go from a turtleneck to a t-shirt.  Good thing there aren’t too many clothes to pick from.

Keep Swimming…

My birthday has been charged with emotion for years.  Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day.  Despite my best efforts, at some point emotion overtakes me.  I have always been grateful for our deep connection – so deep that I named my daughter for her.  But, somehow 21 years fade and the feelings are that of yesterday.  Oh, how I miss her.

“Angel Meghan” – 1987

Keep Swimming….

My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable.  Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on.  I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.

Keep Swimming…

GiGi fell during the storm.  Two weeks ago today we were very scared.  Today she walked with help around the dining room table.  Her feet still work, she was excited to discover.  Surely this is a realization worth celebrating.  Happy birthday to me.

Keep Swimming…

We went to Midland beach today with a few small things.  A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning.  Sometimes paying it forward is the best birthday gift you can give yourself.  If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference.  It matters.

These people.  The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy,  they certainly are showing their ability to…

…Keep Swimming…

Such an intense day.  At times I laughed.  At times I cried.  At times I was proud.  At times I was sad.  Life is changing every single day.  The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.

I looked over my blog today.  It has truly been a journey.  And if you got this far you are reading my…

Who knew I had this much to say?
Amazing you people find this interesting! 🙂 But I am grateful to have you.

Tonight I am reflective.  I am enjoying my family and my wine.  I am thankful.  And I am tired.

It has been a long year.  But a productive one.  A year unlike any I had ever imagined.  The journey here is far from over.  I am thankful for my close friends, and my cyber friends.  I am thankful for those of you who read, who I will never know.  I am thankful for reality checks.  I am thankful for celebrations, and laughter and tears –  for they all make me who I am.

This is definitely a marathon, not a sprint.  Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.

I am trying – with a little help from my friends.

“More Birthdays”

I get it.  Sometimes it takes a bit – but I get it now.

I mean, I understood in theory what the American Cancer Society meant when they came out with this slogan, but today it really hit me.

 

Today was it – the “take two” for my little girl who was shut out of the Susan G. Komen Race for the Cure in September because of a fever.  This was her chance to walk with Mom and Grandma.  She even got the added bonus of having Dad with us this morning.

My Inspirations!
My HEART and SOUL!

 

Living where we do, an event like this seems to bring out just about everyone, and it was hard to take two steps without bumping into someone we knew.  It was also almost impossible to look anywhere and NOT see one of those pink survivor sashes.  I saw them on women of ALL ages – from the frighteningly young, to the admirably old, and it got me thinking.

More birthdays…

Before my mom had her cancer, she could have sometimes been caught cringing at the sound of “50.”  After a double mastectomy, 6 months of chemo, and in the middle of 5 years of tamoxifen – she embraced 50 with a smile, and slid gracefully past 60.  “Beats the alternative,” she often says.

More birthdays…

We waited with a group from Meghan’s school for a while, and it was hard not to read some of the “team” T-shirts.  A large group gathered right next to us was commemorating a young lady who apparently died of breast cancer in 1994.  Her birthdate was listed as 1971.  What her family probably would have done for more birthdays.  I can’t even imagine…

More birthdays…

As I stood there, I thought about the “previvors” I have “met” on the internet and from this blog.  They have courage of a type no other can quite get.  The courage to undergo a prophylactic bilateral mastectomy is not to be understated.  I am impressed at the maturity of  the very young, and the wisdom of those closer to my own age.  But, I was struck, somewhere in between the quick math that left me knowing the young lady on the T-shirt had been 23 when she died of breast cancer in 1994, and that my own girl will be 23 in 14 years.  Suddenly it didn’t seem that long, and I was afraid.

More birthdays…

My little girl will grow to be 95 I reassured myself.  With the power and knowledge we have – she will know lots more birthdays.  But the reality that my mom had cancer at 48, and I had it at 38, and the current screening recommendations are to screen 10 years before your closest relative had the disease, well – it made it hard to breathe for a few minutes.  Then my husband reminded me that she has ALREADY been screened – twice.  We will be vigilant.

More birthdays…

And then I thought about my own.  I will turn 39 next month.  That is the age some people like to stay at forever.  NOT ME!  I want MORE BIRTHDAYS!

My beautiful cousin Meghan died of Leukemia in 1991, on my 18th birthday.

 

More birthdays….

My cousin Meghan was a brave soul.  She was diagnosed with Leukemia when she was 2.  She fought for 4 years before the disease took her from us.  She got her wings the day I turned 18, and every birthday since then has been bittersweet.  We had a connection that I still find it difficult to describe.  My love for her was deep enough, that I needed to name my daughter for our “Angel Meghan.”  Meghan did not have enough birthdays.  This may be the year that I look at mine a little differently.  Maybe its time to use my birthday as a time to celebrate BOTH of our lives.

More birthdays…

We left the walk a little early this morning.  We had to head out to Long Island.  My nephew Luke was celebrating his 9th birthday today.  And as the kids played, and the candles got blown out on the cake, I found myself really sure that I understood.  As my sister said just an hour or so ago… It’s not about the gifts.  It’s about the people you celebrate with.  We celebrated Luke’s birthday with 3 GREAT grandparents, and 4 of his grandparents.  It’s easy to fight for more birthdays when you are this blessed.

I get it…

It’s not all about us

And this is how the day started.  With thoughts of Friday.  Never a good way to start the week.  I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time. 

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street.  As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else.  I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus.  UGH!

Pretty much that sums up how the day continued.  There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time.  And I don’t claim to be free of frustration.  Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view.  I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes.  And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it.  Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true.  I look at my grandparents, still married  – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out.  I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often.  So many people could learn life lessons from my grandparents.  They are role models to be emulated in so many ways.

Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease.  Cowden’s Syndrome or any other are not prerequisites for compassion.  You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here.  No major new doctor news.  The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her.  The joint pain is returning, slowly, one spot at a time.  It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week.  Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain.  We go to the eye doctor in 2 weeks.  The cardiologist is the beginning of December.  He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart.  Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules.  That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..)  But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think.  While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure.  I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th.  And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out.  We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child.  She sees a lull in doctors as an opportunity to spend time helping others.  There has to be a bunch of lessons there.

Take a minute to breathe.  Time passes so quickly.  Hug a loved one.  Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

“I plan, God laughs.”

I really should listen to my Mom…

My Mom says this… a lot.  And she is usually right.  I am a planner by nature.  Mom, although sometimes reluctant to admit it, is a planner too.  The difference is that the wisdom of her years have helped her tone down the level of planning so it is a bit less obvious, and she has also – wisely- learned to keep many of the plans she does make – to herself.

I like to organize everything, and quite simply put – Cowden’s Syndrome is chaos.  At least right now.

I mean eventually maybe it will fall into a neat little schedule of screenings, and routine visits, but right now – not so much.  If you saw the legal size yellow pad on my desk you would chuckle.  I have appointments planned until February of 2013.  And, at first glance to list doesn’t look too bad.  I was proud.  I got to these appointments early.  They are all routine.  They will all happen after school or on vacation days.  My terms.  But then we get to the unscheduled ones… and the follow ups… and the new visits.  That’s when things start getting hairy.

I called the oncologist‘s office today to get the results of my MRI.  The oncologist is away until Tuesday, but a very kind nurse called me back in about an hour.  She said, “Everything is benign.”  I wasn’t sure to be relived, or panicked.  What “everything?”  So she started with telling me my liver is just fine.  (Well thank goodness, because I hadn’t even THOUGHT to worry about my liver.)  She then proceeded to tell me there was a “small cyst” on my kidney, but that was probably no big deal. (And probably not a worry unless you live in a subgroup of people that have a 33% lifetime incidence of renal cell carcinoma.) She continued by telling me my spleen was “a bit more involved.” Hmmm… never have those words started a positive conversation.

The last two times I have had abdominal sonograms, both have very matter of factly stated that there is one 3.5 cm harmatoma on my spleen.  Ok, I had decided all by myself… if it stays 3.5 cm and behaves, we will just leave it there.

Well, apparently there is a “vascular lesion” that is a “significant” size, and “several” small harmatomas on the spleen.

So I said, “what does this all mean?”  That is when she said we would have to wait until the oncologist returned to determine the necessary next steps.

“Can I have a copy of the report?”

“I would rather not send it to you until you speak to the doctor.  I just wanted to reassure you there were no malignancies.  She may want you to come in.”

Which is where I did laugh out loud.  Come in – to hear a summary of what I was just told?  No thanks.  Just tell me what I need to do next and I will get it done.

I looked at my nice yellow pad, where September  previously had no appointments, and I see the colonoscopy written in for the 18th.

I have to say I was pretty sure 2 major surgeries for me, meant I was done for the year.  There goes that planning again.  Maybe I will keep my spleen and its harmatomas forever.  Maybe they will make me have it out.  Truth is I have no idea.  And I can’t plan for it at all.

School starts in a week or so.  My life apparently doesn’t always jive with the school calendar.  I will have to roll with it.

More importantly, Pop’s birthday is tomorrow.  He is 93, and a true inspiration.  My family will gather at my house to celebrate him.  I couldn’t be more excited.

I really think I am OK with this concept, but we all need a reminder sometimes!

I will get my results Tuesday, and life will go on.  It will all work itself out, as it has for… well forever.  I will try to keep the planning in check.  I really do try.

The only thing I am planning tonight is how many chairs I need for Pop’s birthday celebration!

EVERYONE has SOMETHING!

Disney World 2011

Meghan and I have a lot of “deep” conversations.  More than you might expect an 8 (almost 9) year old to be capable of.

Today she was wondering why we have to have Cowden’s Syndrome.  Why is our PTEN gene broken?

Well, I said to her, everyone has something to deal with – and this is what we’ve got.

She thought for a minute, trying to figure it out herself, and then said, “What do you mean?”

“No matter where you go in the world, in every city and town, in every street, in every country, on every continent – EVERYONE is dealing with SOMETHING.”

I told her there is a saying that goes around “If everyone could toss all their troubles into a circle, and choose which ones we wanted, we would likely take our own back.”

Almost indignant she said,, “Why would I take back Cowden’s Syndrome? It stinks.”

Yep, but would you trade it for the family that doesn’t have enough money to buy food, the family that lost their house to a fire, the family where the parents have lost their jobs, the family where the parents aren’t in love, or are divorced, the child who can’t have any pets because her sisters are allergic, the family whose Mom or Dad died, fighting for the freedoms we celebrate today?”

It doesn’t take much for her to “get it.”  That’s why I love her so much.

Christmas 2011

“There are kids without dogs,” she said.  “Lots of them.  And I really love Allie and Lucky.

There are kids without their own room, or even their own house.

There are kids whose Moms and Dads don’t love each other.

Some kids have other diseases where they have to go to the hospital even more than me.

Ist Holy Communion 2011, with GiGi and Pop

Some kids don’t get to know their grandparents or their great- grandparents, like I do.

I get it Mom, I think I do.  But, still it seems like some people have no worries, no problems at all.”

“Those are the people I worry most about Meghan.  Those are usually the people whose hearts hurt.  They are often alone, or insecure, or feeling unloved.  Trust me, EVERYONE has something.”

Fireworks!

“I guess you were right Mom.  I don’t like having Cowden’s Syndrome… but I wouldn’t trade our life for anyone’s.”

I am glad – me either.  Our “thing” to handle is medical, and we will get through it – together. Tonight we celebrate our country, and the freedoms it was founded on.  We celebrate the soldiers who fought for our freedoms, and the ones that continue to fight. It is those freedoms that allow us the ability to battle whatever “thing” plagues our own life. 

 We are all struggling, and we are all lucky.”

“Sapphire”

Grandpa, …, passed away on Monday, June 18, 2012. . Born in …Grandpa lived in … for many years before moving to …7 years ago. He worked as a lineman and foreman for PSE&G for many years prior to his retirement. He was a proud veteran of the U.S. Army during WWII and the Korean War and lifetime member of the American Legion. Beloved husband of 60 years to Grandma. Devoted father to…and his wife … and … and his wife …. Cherished grandfather to 6 grandchildren and 3 great-grandchildren. He was also survived by many loving nieces,nephews and friends.

***************************************************************************

The above is a snapshot of my Grandfather’s obituary.  I removed the names and locations, because really – they don’t matter.  He was a kind and gentle man, loved by everyone.  Classy, and wise – funny, and easy to talk to.

My daughter proved to me again this week, that although we have Cowden’s Syndrome, it does not have us.  It does not define who we are.

She is 8, turning 9 in a few short months.  This was her first funeral.  She went to the funeral parlor with me, alone.  And then to the funeral with our family.  She acted as one of the honorary pallbearers.  She cried, she smiled, she focused, she hugged all the right people at all the right times.  She got through the service, and hours into lunch before we handed over her Itouch – she never even asked.

My Grandfather called her “Sapphire.”  He knew she was special.  He made sure she had a sapphire necklace.  Her eyes lit up whenever they were together.  He will be sorely missed by all of us.

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De :fr:Image:SaphirSynthetique.jpg Categoría:Minería (imagen) (Photo credit: Wikipedia)

Once again – I am reminded of how precious life is.  And once again, I am humbled and proud to be her mother.

 

 

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Father’s Day

Some days it’s not about Cowden’s Syndrome, or tumors, or doctor’s appointments.  Some days life just is about life.

Father’s Day.  A day to celebrate the fathers in our lives.

My husband is the best dad in the world.  I mean it.  And he is a pretty amazing husband too.  There aren’t enough words to describe how lucky I am.

My Dad, tries his best.  He and my mom divorced when I was 5.  He has struggled with his own life through the years, but we have stayed in contact.  He does the best he can.

My stepdad, married my mom 24 years ago.  He inherited 2 bratty teenagers and has loved us as his own from the beginning.  He has put us through college, paid for 2 weddings, fixed houses, and been there through it all.

My Pop, my mom’s Dad is 92.  A WWII veteran, and a retired firefighter, he is amazing.  He and Grandma still live on the second floor of their own house.  We lived in their house for 15 years, and they became a second set of parents for us. Now they are Great Grandparents.  They pick up my daughter on half days, and love spending time with her.

Today my heart is heavy though. My stepdad’s father is suffering.  When his son married my mom 24 years ago, they had no grandchildren.  They didn’t expect to start out inheriting two teenagers, but they did.  And they handled it gracefully.  Over time Grandpa came to love us in a very special way.  He is especially attached to my daughter, who he calls “Sapphire.”  He even made sure she had a special sapphire necklace to always remember her name.  He has been brave his whole life and has fought cancer in more places than I can count.  He has been in the hospital for a month now, and this is it.  He is ready.  He has had last rites.  He has asked his boys to take care of their mom.  He has told God he is ready to go.  So we wait.

Today we remember the fathers, grandfathers, and great grandfathers that have touched our lives.  We hug some, and we miss some.  We acknowledge their impact on us.

And today in my house, we whisper constantly a prayer to God.  Today it’s not about test results or surgeries.  Today we ask that He be merciful.  Grandpa is ready to rest…