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…

 

 

The Days are Long, but the Years are Short…

 

A wise person once told me this.  I think Meghan was young, and in that two-year span where most of her time was spent screaming.  I admit to wanting those days to end when I was in the middle of them.  And, while I miss some of the cuddling, truth be told, I’m not sorry I wished THOSE days away.

It’s the rest of them.

From the time she stopped screaming, she’s been pretty cool to be around.  And now I look at her eye to eye.  While she’ll always be my baby, the years seem to be flying by.

This week I had to explain to her middle school that she would NOT be taking 9th grade math in 8th grade.  For some people this makes a lot of sense.  For us, not so much.  I’m all about the foundation of math, and building without the 8th floor seems silly to me.  Plus, really, there is nothing wrong with taking 8th grade math in 8th grade.  What’s all the rush?

When Meghan was born she had seven great-grandparents.  Two of them she never met in Puerto Rico, but still seven great-grandparents.  Insane.

She also had 5 grandparents.  That’s a lot of love.

But, I also remember clearly a colleague at work commenting, “That’s a lot of loss she’ll have to endure.”

Three of the most important men in my life.
Three of the most important men in my life.

I was indignant.  Annoyed when she said it, because even though my conscious mind knew it to be true, I was not one to sit around and think about it.

We had Cowden’s Syndrome to digest.  We had major league health and emotional issues to manage, and I couldn’t allow fear to envelop us.

I surrounded her with the grandparents and great-grandparents as often as I could.  And every year that ticked by was a blessing, because she built her own memories and relationships with each one.

The fathers and grandfathers...
The fathers and grandfathers…

Then, in June 4 years ago, in 2012, we lost GGPa, Grandpa Al – Ken’s Dad.  He was so much a part of our lives and our family.  Ken embraced us as his own when he married Mom, and his family was no different.  And Meghan and GGPa… well, she was his “Sapphire,” and they could certainly light up each other’s eyes.

In the fall of 2013, Grandpa Tom got sick.  He was never ever sick.  But, this time it looked very wrong.  And it was.  In about 3 months time, he was gone.  Snatched away at 65.  He had made such an effort to be around Meghan.  He was so deliberately making up for lost time and I loved him for it. They had their own set of memories…

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A few months later, in October of 2014 Great Grandma Gen headed up to meet the angels she missed for so many years…

And then in March of this year our beloved “Pop” was gone.  Pop was larger than life.  And even at 96, seemed almost invincible.  Until he wasn’t.  The ache is deep, and raw.

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Five years ago I bought so many Father’s Day cards, people would laugh at me.  Five years ago I remember telling Meghan how thankful I was to need to buy that many cards.  Five years ago, I couldn’t have predicted…

So much has gone on in our lives on a medical front.  If I count loosely I would say it’s been about 10 surgeries between us since that Cowden’s diagnosis in 2011.  So often we feel like we are bouncing from one hospital or appointment to another.  So often we are scheduling appointments instead of relaxation, surgeries instead of vacations.

But, we make a point to stop.  To try.  To focus.  Yesterday was a tough day.  The pain was a bit overwhelming at times.  But, the gratitude runs deep, for the family we have.  For Felix, the best husband and father we could have ever asked for.

Felix took some of Pop's tools from his car, and brought them back to their glory.  Those two had their own special bond.
Felix took some of Pop’s tools from his car, and brought them back to their glory. Those two had their own special bond.

Tonight there was wonder in Meghan’s eyes.  She saw the first fireflies of summer after swim practice.  They went out to get a closer look.

And I peeked out onto the back deck to catch a glimpse of my 5’8″ daughter on her father’s shoulders – to get a better picture of the sunset.

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A better view on Daddy’s shoulders – no matter how tall! 🙂

I smiled, in spite of myself.  Tonight it’s not about the weeks ahead.  Tonight it’s not about the next surgeries and appointments.  Tonight, it’s about tonight.  It’s about going to bed a little later so as not to miss the little things.

Tonight is about making memories.  The little ones.  The ones that matter.  The ones you carry in your heart forever.

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The Days are Long, but the Years are Short…

And we remain forever

#beatingcowdens

The Changing of the Calendar

Every year, this same week, I sit down with my calendar, and one for the following year.  I carefully transfer all the important dates I need to remember.  I write the birthdays, anniversaries, and other important “days to remember.”  There is probably some much more high tech efficient way to do this on my iPhone, but this is a job I am not looking to simplify, or give up.  I enjoy the time spent reflecting on the year that passed, and wondering what the next year will bring.


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During the course of the year, around all the birthday and  anniversary reminders, the basic events of life fill in the blanks.  I can look back on some weeks, and months – where there doesn’t seem to be an empty box, and wonder how we got through.   There are the basics, PT, swimming, dance class, music class.  There are some parties, and celebrations.   Around them are peppered annual exams, like the cardiologist and the eye doctor.  There are some “sick” visits with the  pediatrician in there too.

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But last year was a “special” year.  Between us there were three surgeries.  Tonight as I reviewed the calendar I saw a higher than normal number of pre and post op visits.  I saw consultation appointments with surgeons, and each month seemed to remind me of a surgery that was, well life changing in its own way.  There were certainly a lot of firsts in 2012.

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And, sadly there were some lasts too.  I couldn’t bring myself not to write GGPa’s birthday on the calendar.  It would have been in just a few weeks.  Instead I wrote it with a heart around it.  This year he will have his cake among the angels.  Nor could I stop myself from remembering his and GGMa’s anniversary the same way.  It didn’t feel right to leave it off.  I am sure she will appreciate a call or an Email anyway.

GGPa, GGMa, Grandma, and Pop (left to right)
GGPa, GGMa, Grandma, and Pop (left to right)

I remember lots of birthdays on my calendar.  Some for the very young, and others for those quite senior folks I love so much.  But, even as I ink those special days into 2013, I know there are no guarantees.  I know that my writing their special date doesn’t ensure that we will all celebrate together.  It is reality.  It is sometimes tough to swallow, but we are not in control.

In Newton Connecticut many young lives were tragically altered.  “Calendars” forever changed.  No rhyme or reason.  No notice.  Gone way too soon.

I attended the wake of a colleague tonight.  A 45 year old, happily married father of three.  He died suddenly Christmas Day.  I can not say we were “friends” outside of work, but I can tell you not a person that met this man easily forgot him.  His every breath was consumed wither with song, or words of his love for his family.  And tonight as I paid my respects I carried a heavy heart, and the reality again, that there are no guarantees.

Meghan was sick this morning.  Sicker than I have seen her in quite some time.  I was home alone, as Felix works this whole week before New Year‘s.  As she lay screaming on the bathroom floor, begging me to make the pain stop, I was terrified.  I called my sister to bring me Pedialyte and some essentials.  We lay there for quite a long time, at points her eyes were rolling – reacting to the pain in her stomach.  I held her as best I could and I prayed, hard.  I needed guidance.  I needed answers, and I needed that pain to be relieved.  He heard me, as He always does.  She vomited several times over the next hour or so, eventually ridding herself of whatever she had eaten that was bothering her.  I hadn’t seen that agony since the days of the gall bladder attacks when she was three.

We had had plans today, to celebrate my grandparents 67th wedding anniversary with them.  Even as the color came back into her cheeks, and the spring back into her step. we stayed home.  The lunch date that was on the calendar – unattended.  Our warm wishes sent with a phone call instead.

Grandma and Pop in December 1945
Grandma and Pop in December 1945

The calendar is a nice guide.  A road map of sorts.  It tells us where we hope to head.  But, as every day reassures me – it, like life, offers no guarantees.

This week the phone will ring.  Appointments will be set.  A thyroid biopsy will be scheduled.  A surgeon for my spleen may even get written in to the calendar as “consultation.”  2012 for us will end as it began.

Although as I tossed the calendar into the trash tonight, I couldn’t help but feel… somehow older, wiser, and even more appreciative of those who somehow come across my calendar each year.

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Thankful for… that first piece of pie!

I was going to avoid boring everyone with the same drivel that has been written over and over today, but I couldn’t resist.

It’s hard not to think about what you are thankful for on a day earmarked for reflection.

So, here it goes…

I am thankful for my husband.  He stays behind the scenes all the time.  He never looks for the credit in anything we do, yet he is the driving force behind our marriage and our family.  He knows when to make me laugh, and when to hold my hand.  I am not sure how I could have gotten through this year (or the 12 before it) without him.

I am thankful for my daughter.  She reminds me every day what is important in life.  She inspires me to push through adversity, and to keep on going – even when the going gets rough.  We share a lot (maybe more than I would like… darn Cowden’s Syndrome) and I could not ever ask for a kinder, more compassionate, loving daughter.  Even on the days we go head to head – I am the proudest Mom.

I am thankful for my “furry children,” my Allie and Lucky.  Their unceasing loyalty, their love and companionship bring such joy to all of us.  Plus – there is nothing like rubbing a belly on a stressed out day to make you feel better!

I am thankful for my parents, and their “being there.”  Sometimes that’s all you need is for someone to be there.

I am thankful for my siblings… all of them so very different, yet all so incredibly important to me.  I am thankful that even on the days we don’t see eye to eye – our love is strong,

I am thankful for my nephews, and the joy they bring, just by being themselves.

I am thankful beyond words for my grandparents.  Their support through these last 39 years, has been pivotal in my development as a person.  I am certainly a better, wiser, stronger woman – having learned from their example.  I continue to learn from them each day; lessons of love and compassion.  Not many people my age are so fortunate. 

I am thankful for my home – more this year.  I celebrate the fact that we passed through “Superstorm Sandy” virtually unscathed.  I am prayerful for those who have lost so much, and I am trying so hard -to recognize the “small things.”

I am thankful for my friends – near and far.  I am thankful for my local friends, my college friends, my friends from work.  I am thankful for the friends I see often, and the ones I hardly see at all.  I am thankful for my “cyber” friends, that I have “met” through support groups, and this blog.  The joy of knowing you are not alone can never be understated.

I am thankful for my health.  I know that may sound strange, considering the whole premise of this blog is about a genetic disorder that compromises the health of myself and my daughter – but hear me out.  I have this year alone undergone 2 major operations, and recovered.  I survived breast cancer without ever needing treatment.  I am able to walk, to run, to care for my child, to exercise, and move freely about my world.  While I have health concerns, and Meghan and I will always have them – I recognize how much health we do have, and I am thankful.

Finally, and the one thing that brought the biggest smile to my face all day – I am thankful for my daughter’s first piece of pie.

Meghan has always had food allergies – gluten, dairy and soy.  This year we made her a pie by rolling out her cookie dough as the crust.  We filled the middle with coconut milk ice cream, and topped it with her syrup.  She was so excited.  It wasn’t until I cut her a piece and she asked me how she was supposed to eat it, that I realized she had never had pie.  Sometimes the little things – are the big things!

Happy Thanksgiving one and all.

Random Reflections – nothing profound today!

We tried another church today.  This time all three of us went.  A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless.  Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.

Førde Church, a typical Protestant church in N...

God has a plan.  And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.”  I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me.  So we will see.  At least we worshipped together as a family – for the first time in months!

It was gray and overcast a lot of the day.  Glad we got in a swim yesterday.  It may have been the last one.  We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner.  Hoping its nothing too serious. 

We got to spend the afternoon with my grandparents and my parents.  Last minute plans are always a treat when we get to be with family.  Pop was 93 last week.  Grandma will be 92 in 2 weeks.  GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.

The oncologist’s nurse called me Friday.  She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things.  I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend.  She told me I could get it Tuesday.  I chuckled.

No matter how hard I try…  “I plan, God laughs.”

I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday.  I will not physically be able to have the CD burned until Friday.  They will get it in about a week and a half.  At which point she nicely reminded me that it could be serious.  To which I replied quite simply, “No it can’t, because I don’t have time.”

She was appalled I think.  But, what I meant was, I have undergone 2 major surgeries in the last 6 months.  I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one.  Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!

I am about done with all these doctors!

So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.

I will at some point get that CD.  I will get the results of Meghan’s blood test and MRI.  I will call Meghan’s school and sort out the busing mess that is developing for the first day of school.  I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed.  I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.

I will get back to work.  We will get back to homework, and a schedule that hopefully involves more kids and less doctors.

There will be stress, and tears, and nervous stomachs, and excitement.

And for Mommy – there will also be wine.  LOTS of wine!

Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!