Grandma – The Long Goodbye

Real life continues around you whether you want it to or not.  And over the last few years as we have juggled Cowden’s Syndrome, my dear Grandma has battled Alzheimer’s Disease.  This disease is far too common and not for the faint of heart.  When it was named “The Long Goodbye”  it was appropriately so.  That goodbye came to its end for my Grandma last week, and her “Celebration of Life” was today.  Her influence on my life can not be understated. 

While I am acutely aware how lucky I am to have had my grandparents for so long, there is a special kind of loss when you’ve been fortunate enough to have grandparents into adulthood.  Below is a transcript of the eulogy I delivered today.  Pictures were just added for good fun.

It has been so hard to gather my thoughts.  I love to write, but it is a formidable task to speak to the end of an era, while teasing apart the pair that was “Grandma and Pop,” in order to spend a few moments remembering Grandma.

Grandma was small and strong, faithful, feisty, loyal, fierce, firm, and dedicated.

Besides being “small,” which is a ship that sailed for me decades ago, I aspire to be like my grandmother.  Sometimes she said very little, but what she said was always full of meaning.  And it was not the fluffy philosophical stuff.  It was straight to the point.  You always knew where you stood with Grandma.

I grew up on the first floor of the two family house they resided in for over 50 years.  I spent some formative years there, from 5 to 15, where I was loved unconditionally and held to a high standard all the time.  Those years shaped my character, and I will be forever grateful.

I can remember learning to keep myself busy, sorting buttons from a glass jar, while I sat on the kitchen floor.  I remember watching Grandma cook, and iron – two things I DEFINITELY did NOT pick up from her.  I remember tasting cookies, and waffles, and the best lemon meringue pie I’ll ever eat.

She was active her whole life.  She took walks all around the neighborhood for many years.  I watched her climb up and down the two flights of stairs to the basement to do laundry, and up again into the attic to get whatever was stored in their “pantry”.  That attic had a pantry that could have helped the block survive a natural disaster.  They were always prepared.

I remember fighting with my sister Lisa, back when it was just the two of us.  I remember being scolded, firmly (and we’ll leave that there..) and being told we needed to look out for each other.  Now we are more grandchildren, and great-grandchildren too.  I remember.  And we will.  We all will.

I remember the times I disappointed.  Thankfully, there weren’t too many, but there is one that I remember like it was yesterday.  Goodness, it must have been almost 40 years ago when I was touching the nativity scene that I had been told to keep my hands off.  I knocked over the donkey and his ear fell off.  Grandma was mad.  And, even after Pop glued the ear back on I saw that ear for the rest of the years that the nativity went up.  Grandma never said another word about it after that day.  No doubt she forgave me.  But, that feeling of disappointing her was not one I ever desired to relive again.

I remember playing card games with Grandma.  I can remember Parcheesi a little, but it must not have been my favorite.  What sticks out in my mind are “King’s Corners” and “500 Rummy”.  I learned so much more than the rules of the games.  I learned that Grandma was not about giving away easy wins.  I learned that if you wanted to win, you had to work for it.  I also learned that sometimes you lose.  And, being a gracious loser is probably more important than winning.  Life lessons.  Thanks Grandma.

I learned how to be frugal after learning all about the Great Depression and the stories of truly having nothing at all.  She didn’t share those stories to garner pity.  She shared them as an explanation.  She shared them as a motivation as well, although she may not have realized it.  You see, I learned that sometimes people have absolutely nothing, and it’s just not their fault.  I learned to work hard, establish a reputation, and to give with a giving heart, with no expectation of return.  I was given gifts.  Through the years I received many material gifts, but the ones forever etched in my heart are the emotional gifts, of love, support, and encouragement.

For years I learned the value of being able to kiss my grandparents goodnight.  Our family was not super-affectionate, but still, there was a lot of love.  And, so much love came from those goodnight kisses, that I still remember today to ALWAYS kiss my family goodnight.  I learned that there is no promise of tomorrow on this earth, and I watched for years as Pop stopped to kiss Grandma goodbye before he left the house for any reason.  It was in those moments I promised myself I would settle for nothing less than a man who loved me the way Pop loved Grandma.  I did not settle Grandma.  And I understand the beauty of loving and being loved.

The days are sometimes long, but the years are short, and our family grew.  And as each generation brought more love into her heart, I understood the value of what we had.  I understood it, and tried to soak it up every chance I had.  Most people are not as fortunate as we have been.

Family Christmas 2015

Grandma’s mind started to give her trouble many years ago.  No one talked about it much.  We just quietly noticed.  Although, I suspect none of us noticed as much, or as soon as Pop surely did.  Maybe it was the depth of his love that motivated him to care for her alone for so long as she slipped away.  I don’t think we’ll ever fully understand, but it was remarkable.  A love story like theirs is almost unheard of in this generation.  It spanned time and space and well over 70 years.

And when the day came that Pop was no longer to be with us, Grandma gained residence in Clove Lakes Nursing Home.

For almost two years the staff of 6A got to know her.  They don’t have an easy job.  You have to have a special heart.  But, they do it with compassion and integrity.  They took the days she lashed out in stride, and sat and talked to her on the other days.  They learned of a woman, who even with a “broken filter” loved God, her husband, and her family.

Some time around Thanksgiving, Grandma stopped eating solid foods.  And although she would, at the start of it, take some Ensure, slowly she transitioned to an all Ginger Ale diet.  And, if you ever bad mouthed Ginger Ale, I’d like to tell you to consider it’s life sustaining properties.  Grandma lived well over a month on Ginger Ale!

For only the last two weeks or so, Grandma spent most of the day in her bed.  It was more comfortable for her thin, weakening frame.  And it was during those visits, Ginger Ale in hand, that we had some of the most remarkable conversations.

Long had passed the day when Grandma knew who I was.  I asked her one day if she knew me, and she gave me a crooked smile and shook her head.  She said simply, “but I know that I love you”.  And, that was quite enough.  I asked if it was OK if I called her Grandma, and she said, “yes”.  So, that was how we rolled.  It didn’t matter if she knew my name.  It mattered that her face brightened when I walked into a room.  The love was deep in her heart.

I started jotting down some of the things she was saying, so I’d have them to look back on, and I have to tell you, I had some good laughs these last few weeks.

Grandma was in her clearest voice saying the Lord’s Prayer one day very recently.  And as she said, “Lead us not into temptation,” she paused, opened her eyes, looked at me, and said, “That’s a bad one…” and proceeded to finish the prayer.  Right to the point.  I got it Grandma… don’t worry.

She prayed a lot those last few days.

She also asked for a bat one day.  Trust me, she had no interest in playing ball.  She wanted a bat to get after one of the most gentle aides on the floor.  Marlene laughed and never even paused while she carefully and lovingly repositioned Grandma.  I was in the room a few days later when Grandma told Marlene she loved her.  That was Grandma, right telling exactly what was on her mind – to the end.

She talked about Pop too.  One day she said during her prayers, “And my darling Ed, don’t forget him.  I bless him and I pray for him.  He’s my best friend.  He’s been my best friend a lot of years…”

She told me she “had a nice time”.  She talked about a trip that she initially didn’t want to take.  But, she came around.  She said, “I have to go with my husband and my chocolate”.  She said, “I have to trust”.  And she told me Jesus died so heaven was “guaranteed”.

The day she left us we played music for her.  With the help of the internet we pulled out her favorite hymns.  She couldn’t talk much, so we played, “My Jesus I Love Thee,” “Amazing Grace,” “What a Friend We Have in Jesus,” “I The Lord of Sea and Sky,” “Beautiful Savior,” “How Great Thou Art…” The list went on.  And, with each passing song she seemed to settle.  She fell into a peaceful sleep.  She was finally almost ready.

Grandma and Pop are back together again now.  I remember after Pop died, and Grandma could not really process his passing, the decision was made not to tell her.  We were told that there really was only a door between them, and the amount of time they’d be on opposite sides of the door was short, especially relative to the time they were together.

Truer words could not have been spoken.  And, as much as we will all miss them terribly, there are people who are just better together.  Grandma and Pop were two of those people.

 

Grandma’s passing marks the end of an era. In addition to being our matriarch, she was the last surviving of the 6 children in her own immediate family.

Grandma and Pop may no longer be here with us, but they leave behind children, and grandchildren, and great-grandchildren, and friends, each with personal, specific, life altering memories.

I have no doubt all the angel choirs are singing today.

I’ll leave you with the prayer Grandma said at the end of almost every Lord’s Prayer this week- “Lord, bless us and make us a blessing to others.  AMEN!”

December 30, 1945
                                     A love story that knows no end…

 

 

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