Onward…

“Onward Christian Soldiers, marching as to war, with the cross of Jesus going on before…”  That was one of Pop’s favorite hymns growing up in our Lutheran Church.  He sang it loud.  He lived it softly, but meaningfully…

It’s been a long time since I have written and I am sorry.

Writing is my therapy.  It’s free and easy.  When there is a few minutes to do it.

writing

And that, well that has been the problem these last few weeks.

I know it’s hard to imagine life getting so crazy that I wouldn’t have an hour or two a week to get my thoughts together, but it’s true.

Time to catch you all up –

On Sunday, February 21, 2016 the Second Annual “Genes for Rare Genes” fundraiser took place at the Hilton Garden Inn on Staten Island.  We had www.yeehahbob.com  Bob Jackson from Walt Disney World at the piano entertaining the masses.  We had generously donated raffles galore.  We had 178 friends and family with us, raising money and awareness for Rare Diseases.  We had Meghan, hosting, and giving her speech and showing her video.  https://beatingcowdens.com/2016/02/21/meghans-rare-disease-day-video-and-speech-2016/  We had Borough President Oddo stop by to continue to support Meghan in her desire to raise awareness and funds.  We had Charlie Balloons entertaining the children and the adults too.

My Everything
My Everything

 

Bob Jackson - Our Disney Friend
Bob Jackson – Our Disney Friend

It was a perfect day, and a month later I can tell you the total funds raised were $13,045.40 to be exact!  A large portion of that money has been sent to the PTEN Foundation and will have a significant impact on helping people like us with PTEN Mutations.  The balance of the money is soon to be on it’s way to the Global Genes Project They will always be near and dear to Meghan.  We identified first with the denim ribbon, and the logo “Hope, It’s in our Genes.”  And that is the site we learned first about Rare Diseases, and that we in fact are among the lucky ones.  These are lessons we will never forget.

Meghan addressing a crowded room
Meghan addressing a crowded room

 

Just a handful of our many raffles
Just a handful of our many raffles

Finally, I THINK, (and I apologize if we forgot anyone) all the thank you notes have been written or Emailed.  When I finally settled down to do it, there were over 80.  Meg helped, but I just flat out write faster.  Now, we rest on that a bit, while we consider what changes and what remains the same for next year.

But, life did not even pause while we planned this event.  My grandfather, my 96 year old grandfather, who was still living on the second floor of the two family home my mother grew up in, caring for my grandma, his bride of 70 years, fell on January 13th.  This set of a tirade of events of the next few weeks that brought us all through an emotional roller coaster.  My grandparents were the center of my world for much of my life, and even though I am blessed to have had them for 42 years, it is hard to imagine navigating life without them.   Pop visited two hospitals, had mutliple strokes, and ultimately ended up in the nursing home for rehabilitation.  The rehab was not meant to be, and on March 3rd he passed away peacefully, after some tumultuous days.

Pop - So much to so many
Pop – So much to so many

Grandma, now resides in that same nursing home.  Alzheimer’s has robbed her of much of her memory, but she is well cared for by kind, patient people.  She is safe.  She is calmer.  This is a good thing.  And, in one of many ironies, perhaps her disease has been a blessing.  There was no need for her to say goodbye to Pop, as he always seems to be just “across the room” when we visit.  They were never meant to be apart any way.

Always together...
Always together…

We celebrated Pop’s life at a beautiful service on March 12th.  My conscious mind, the rational one, is grateful he is at peace, and thrilled to know he is Home in Heaven.  The little girl in me, the one who adores her grandfather is sad.  Just very sad, and not looking forward to the series of “firsts” in front of us as reality sets in.

I planted the seedlings for my garden, just as my Pop showed me.  I am tending to them on the kitchen table with plenty of sunlight.  They have begun to sprout.

image

And those seedlings, and signs of new life remind me of why Pop loved the garden so.  It is refreshing to see growth, new life, and new promise each day.

We celebrated Kathi’s bridal shower, as she and Jon will marry April 15th.  All things new.

Time keeps passing.

time passes

In the interim there have been regular Mommy things to do, like swim practice, and doctor’s appointments, and household stuff.  Thankfully in this house we have a very, very helpful Daddy, and we do a lot of team work.  Thanks to him, all those weeks I was out of commission cherishing every moment with Pop, he was here, keeping it all going.

Last week we went dress shopping for some of the events coming quickly.

This week it was shoe shopping.  Shopping for shoes is never as much fun, because it is hard to find a shoe that is 12 years old, and supports those feet, knees and legs.  The right knee, the site of 6 surgeries targeting that AVM, has residual damage.  The muscles are not formed as well, obvious only to Meghan when she puts on a pair of jeans.  The foot is over one full size smaller than the other, and it is skinnier too.  So, we buy two pairs of shoes to make one “pair.”  We are careful.  Frugal when we can be as it’s all x2, but focus is always on fit, style and comfort combined.  No easy task.  But, we did it.

Meghan left the store apologizing for the bill.  I told her how grateful I am that we can pay for shoes, and other things.  We had a long talk about the phrase, “I cried because I had no shoes, then I met a man who had no feet.”  It fits nicely with the perspective talks we have all the time.

image

Tonight I was thrilled to find a website that will allow me to donate her “other” shoes to amputees.  She was excited too.  Something that will make us both feel better.

This week I scheduled some more appointments.  I was waiting.

Friday we head to the gyn for the 3 month follow up.  The hormones are a nightmare, but that’s for another post.  The next biopsy is supposed to be in June…

The dermatologist 6 month will be during spring break.  So will the orthopedist.

Cowden’s wasn’t gone.  Heck, it wasn’t even resting.  I was just using a big stick to hold it at bay for a few weeks.  I’m sure I left some stuff out.  It’ll come up if it was all that important.  Just know-

We are still #BEATINGCOWDENS!

Onward…

 

“Super” Man

 

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

Superheroes are invincible.  No matter what they always find a way to pull through.  They make complicated tasks look easy.  They make the world a better place just by being there.

Thursday night my family said goodbye to our Superhero.  Pop passed away at the age of 96.

Pop3

Now, before you get on about telling me how lucky I am.  I know.  Before you tell me he lived a good life, I know.  Before you tell me, “at least he’s at peace.”  I know that too.  I recognize fully that I am 42 years old and I am saying goodbye to my GRANDFATHER.  I get how epic it is that he got to know and love his great-grandchildren.  I understand all of it.  I am acutely aware of young, tragic stories that pepper this world.  And, my heart breaks for each of them.  But, please don’t think for a moment it will make enduring this loss even the tiniest bit easier.

Pop1

For every moment of my 42 years there has been Pop.  There has been the ability to call him, to chat with him, to follow him around, to hear his stories, to receive his hugs, his humor, and his love.  There was Pop to read to me as a young child.  There was Pop to teach me about the basics of a car, and oil changes when I went to college.  There was Pop to dance with me at my wedding.  There was Pop to take his 80-year-old body to my house every day and place my wood trim, piece by piece.  There has always been Pop.  And now there isn’t.

There was Pop and Grandma living upstairs during the years when Mom had to work a lot.  There was Pop to drive me everywhere.  There was Pop to record important events.  There was Pop who NEVER said,”No,” and NEVER made you feel like you were bothering him.  There was Pop who played in his garden, growing lima beans, string beans, cucumbers and tomatoes.  There was Pop who built his own deck, and sided his own house. There was Pop who made everything look easy.  There was Pop who made rocking horses for grandchildren and great-grandchildren.  There was Pop who picked up Meghan from the school bus until about 4 years ago. I could sit here forever and the list would just extend. There has always been Pop.  And now there isn’t.

Pop2

I’ve been pretty silent on this blog for a few weeks.  Not because Cowden’s up and left us alone.  But, rather because there were other things that needed attention more.  For a little while.

I got the call on January 13th that he was at the hospital.  He had fallen.  They were testing.  He was discharged a few days later, although he was only home a few days.  Before the rehab could start, he was taken to a different hospital.  Strokes were occurring.  There was an attempt at rehab there, and then a move to the telemetry floor, and finally a move to a local nursing home to try some rehab there.  The strokes had taken away the thing he prided himself on, his mobility.  The right leg wasn’t interested in coming around, despite efforts from several good therapists over many weeks.

Pop was many things to many people, but he was undeniably stubborn.  That tenacity undoubtedly is what had carried him through the months preceding the series of strokes.  He had Grandma, and he was set on taking care of his bride of 70 years, at all costs.  He knew we were losing her to alzheimer’s.  He was aware in so many ways.  Yet, he was unrelenting in his forceful desire to care for her at home, “as long as God gives me breath.”  He took only help from my Mom, and in the very short time preceding his hospitalization there was an aide for a few hours each day.  But he, cooked, cleaned up, did laundry, shopped.  And they lived on the SECOND floor of their home.

DSCN0260

He modeled “in sickness and in health,” and “for better or for worse,” in ways that people do not even comprehend anymore.  He took his vows and his promises so seriously.  I learned what it meant to be married watching them through the years.  They modeled love and respect, and he never ever walked away without kissing her goodbye.

That’s why he pushed so hard.  Just as he had for all of us through the years, he was propelled by love of God and love of family.  He drove his own car, albeit short distances.  He handled the bills, the paperwork, and navigated Email and the internet.  In the weeks before he passed we watched our 96-year-old Pop go from behaving like he was 70, to being 96.  And it was not easy to watch over 25 years catch up with him in those weeks.  It was not easy to watch the frustration, the desire to move, and the pounds slipping away as even eating became a challenge.

 

Grandma now resides in the nursing home Pop passed away in.  And she is incredibly well cared for.  I do think he would approve.  But, her memories are leaving her.  And maybe at this point, maybe that’s just better.  Because to process the loss of Pop is incomprehensible to those of us who have a tight grasp on a lifetime of memories.  Maybe that’s one of the blessings I can find here.  Because I know when it’s time, they will be together.  And I know the time they will spend apart will equate to a small fraction of the life they spent together.

_DSC0155

When Pop first was hospitalized I was quite upset, and I apologized to a friend who had lost her mother at a young age.  She spoke to me so kindly, I will never forget.  “It’s hard for you because you’ve never lived life without him.”  So gracious when she could have chosen to go in so many other directions.

Those are the words that give me comfort.  Those are the words that tell me it’s ok to grieve.  It’s ok to feel like I’ve got a 600 pound boulder on my chest, suffocating me.  Those are the words that tell me that 42 years is a long time to have someone in your life and then lose them.

December 2015
                                                        December 2015

 

Pop was sharp.  He was up on all of us, and all of our lives.  He knew specifics, and questioned and followed along.  Meghan always said she was in awe of how he defied his calendar age.  She, like the rest of us, was enamored.  And as he was at the second hospital having a scan, and he educated the lab technician on Cowden’s Syndrome, I had to laugh in spite of myself.  He was always learning, and he wanted to make sure others were too.

 

I walked through their house yesterday, as I have done so many times before, but this time I stopped and looked at the Bible, held together by tape from constant use.  I looked at the devotional set to January 12th, the day before he fell, and I smiled.  He was, above all things, devoted to God.

The first great grandchildren - Luke and Meghan
                           The first great-grandchildren – Luke and Meghan

His memorial service will take place next Saturday, at the church I grew up in, at the church he helped build and maintain for so many years.  I have some time to get my thoughts together before I speak that day.  Pray that I may find a way to honor my grandfather, where words just don’t seem significant enough.

DSC_0077

Right now we look for the promises of Spring, and new life.  We look forward to my sister’s wedding.  We press on, not because we are not broken, but because there is no choice.

Our hearts are torn, because there is never ever enough time.  That’s what I tried to get at on my Facebook page.

I am convinced there is never enough time with those who love us so deeply, and those we love beyond measure or words. We are so devastated at the loss of Pop, who was the anchor of our family through every storm, the wind to our sails, and the bridge under our feet. He was so much to all of us, and through our different relationships he somehow made us all feel like we were incredibly important. He lived through deeds, not words. His actions spoke volumes of his character, and were so telling of who he was. He lived his life in service to God and his country, while loving his family immensely. Rest easy and celebrate with the angels Pop. We will miss you every day. Until we meet again…”

Popimg126