My cousin Kim stood, graveside, holding 2 flowers over the 7 month baby bump under her black dress. Two roses. One was red and the other was pink. One was for her, and the other for baby Mackenzie. It was time to lay to rest her husband, and the father Mackenzie will only know through the stories and photos a strong community will share with her forever.
Exactly a week earlier we gathered together in joyful celebration to shower Kim and Nando with love for Baby Mackenzie, due in November. Little pink clothes, laughter, anticipation and love for a baby they waited so long to have.
The next day he was gone. That fast.
He was one of five children, and part of a large family.
My family, Kim’s family is large as well. Our fathers were brothers, in a family of 9 children, and although mine passed away in 2013, the love shared by all runs deep. We are close to 30 first cousins thick. The second cousins are starting to increase in number.
I sat in the funeral home in stunned silence most of the time. But, the room was crowded, the lines were long, and the hugs and tears were all genuine.
I didn’t know Nando as well as many others. As a matter of fact, I wish I had known him better. Clearly, judging by community response and turnout, he carried the same heart as my cousin Kim in his larger than life body.
I can’t make a bit of sense out of any of it. So I have to lean on my faith, and do whatever I can to offer support. Sometimes tragedy just is…
Kim is strong, almost stoic. She is a mother already, carefully shielding my newest little cousin from the anguish in her heart. This beautiful baby will bring joy to so many.
We do not know the hour…
Tomorrow is not promised on this earth…
When we talk about #beatingcowdens, we talk about vigilance. We talk about a warning system. We already know what we are up against. So often I can’t help but wonder how many people would give anything to have had warning.
It’s all perspective. Sometimes I have to pause here and tell a story that is not about us. That is not about Cowden’s Syndrome.
There is a generosity of spirit that lives in so many. I witnessed it last week in a community outpouring of love.
My Uncle put it into words about his son-in-law.
Although I am not surprised.
I have received that generosity of spirit from Kim and Nando, and the family so many times.
Pay it forward. The idea that you do good things with no expectation of repayment. That’s how they live. This week we got to witness a little bit of the good that comes from living life for others.
More than one person my cousin works with, sat with me at the funeral parlor to ask about Meghan and I. I didn’t know them. They knew of our story through Kim.
Currently our fundraiser for the PTEN Foundation is scheduled for 10/28. I contacted my Aunt, and asked if we should cancel. I needed to know if it was too close. I would never ever want to be disrespectful.
The response?
Don’t cancel. Kim plans to be there.
I guess that’s just what family does for each other. And there is always plenty of room at our table.
Pull up a chair. We’re in it for the long haul- together.
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.
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.
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
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.
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
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.
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.
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?
I’m not one for Valentine’s Day. Never was. It didn’t matter to me if I was dating or single, it just never made sense. The “Hallmark Holiday” seemed determined to bleed money out of people who shouldn’t have to work so hard to prove themselves one day a year.
If you love someone, prove it every day. It’s not about the big things. It’s about the things that matter.
Picking up someone else’s mess, doing someone’s laundry, a random hug, an “I love you” that’s real and spontaneous, treating each other respectfully all the time… and so on…
My husband and I decided years ago to exchange only cards on Valentine’s Day. I already know how much he loves me. We do what we can to get a little something for our girl, well, just because. And we, we try to get organized and celebrate our anniversary. The day we stood before God and our families and friends and pledged our “for better or for worse,” and “in sickness and in health.” Because those vows – they matter so much.
Tomorrow I will head to Manhattan for three of my annual appointments, carefully timed to cost me exactly one day off of work. I will see the oncologist, the breast surgeon, and the endocrine surgeon, with some blood work thrown in for good measure, and the results of a sonogram from Saturday checking on that bumpy spleen of mine.
I will return in time to have parent conferences at my daughter’s school.
Not a “romantic” day by any means.
I will wear a red shirt that says “Strong” and I will make it work with a smile.
Because, I will be thinking of this heart.
Last year in January, my Grandfather fell. It was after a trip to the grocery store. We later found there was stroke activity, and that January day began a slippery slope that ended with his passing on March 3rd. If you know me personally at all, you know my grandparents were larger than life to me. That’s it. They were 70 years married, and even though Alzheimer’s had largely robbed Grandma of much of her memory, my Pop loved her with his whole heart.
Last year, coincidentally, my grandparents spent Valentine’s Day in the nursing home at the same time. And, although I’m not totally sure either was aware of the date at the time, we were.
A few days after Pop passed, my uncle sent the picture above. He was cleaning out the linen closet and tucked in between some things was this heart. By every rational account it must have been purchased by Pop, for his love, on that day in January when he made his last shopping trip alone.
My Pop was a man that planned ahead. He was a man who always thought of his wife, and lived every day loving her with his whole heart. And my Grandma, well, she’s pretty special herself, and she’s always been quite fond of chocolate.
Nothing flashy, nothing fancy. But he saw the hearts early, and thought of her. That’s how he rolled. Always kissing her hello and goodbye, clipping roses from their rosebush, and doing what he could, even when there was nothing more he could do.
My newsfeed, and my heart have been full lately, of people struggling and suffering. The prayer list is long. There is pain and sadness and worry. But within, there is also love, and gratitude and compassion.
Life is about balance.
I’d rather spread out the love to last all year. I’ve got plenty to share.
For it is with love alone that we hold each other up.
Love for those around us, and those who’ve gone before, motivates us.
Grandma is still “here” but many of you understand when I say I miss my grandparents. The love though, the love and the example they set is imprinted forever in my soul.
It is with Love and Gratitude that we find the strength to remain
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.
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.
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.
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.
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.
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
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
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.
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…”
There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day. He doesn’t get much attention, and he prefers it that way. Yet, I shudder to think where we would be in this war without our strongest soldier.
He never could have known almost 16 years ago what he was getting himself into. Yet, somehow every day I feel the strength and power of his love.
We stood in front of God, and our family and friends on that chilly April day in 2000, and he promised to love me, “for better or for worse, in sickness and in health…” And he surely has been true to his word.
I am not to sit here and say, “life is perfect,” or “we never disagree.” Because I would be lying, and frankly that would be boring.
But, we work together. We swallow pride when it’s necessary. We say I’m sorry. We forgive.
And, what I can say, is there is not a chance Meghan and I could spend our days “beatingcowdens” without him.
Most often he is not physically with us. He works later than I do. I pick up the afternoon appointments, local or in NYC. I drive to swim practice. I wait there and drive home. I am gone hours and hours every day.
We communicate via text a lot. I type a paragraph, he answers in a word or two.
Yet there is this sense of companionship we share from afar. While he can not be with us at all the appointments, or the practices, or the general running around the days take us on, he is home, with us in mind.
I can not tell you how often we walk into a house full of the smell of a freshly cooked meal. It’s not unusual for me to find a bed full of clean and folded laundry. The dogs are cared for. The candles burn all winter when the house is closed and stale. The floor is clean. Little is left out and around because he knows my compulsions and respects them enough to help me when I’m not home enough to help myself.
None of these tasks are trite. They are what provides me with the momentary glimpses of sanity I so desperately need.
He is patient when we talk about fundraising. When the whole month of January, and part of February will be consumed with “Jeans for Rare Genes 2” because Meghan wanted to DO something. He works, behind the scenes, ever-so-quietly to spread the word, raise awareness and get things started.
He backs up technology and sits through software updates.
He updates, paints, and fixes just about everything. And he really HATES painting.
He is a father above and beyond all things. He loves our girl so completely she still holds his heart in her hands. He is her way to unwind from her tightly wound Mom. He is her chef. He knows how to tease her until she laughs, and how to hold her most precious needs close to his heart.
And when the night rolls around, and the weight of the day presses heavy on my heart, he has the right balance of knowing when to hug me, and when to make me laugh. My worries transcend even Cowden’s Syndrome, and the list of prayers grows deeper every day for those we love who fight more than their share of battles. He knows just what I need. All the time.
Cowden’s Syndrome permeates every day of our lives. It’s reality. It is 5 surgeries for Meghan in a little over a year. It is 70 minutes on the ultrasound table for me this weekend, hoping, praying that I had the most thorough tech ever, and she didn’t actually FIND anything. It is next steps, and strategies, and switching doctors, and making decisions, tough decisions.
The saying goes that if we all tossed our problems into a pile, we’d take our own right back. I would… if and only if I could continue to run through life with my husband and my daughter by my side.
Here’s to the unsung heroes in all of our lives… for the STRENGTH and COURAGE they provide. Give them a call, or a text, or a hug.
Although there is some debate on that, I stand with Billy Graham.
We lost our Allie Girl today. And just when I thought there couldn’t be anymore sadness, our hearts are broken in half.
Allie found us. Rather, she found Felix, in August of 2007, when PLUTO Rescue did their events at Petsmart. It was August 4th, Felix’s birthday, and we stopped in just to grab a bag of food for Lucky. Meghan and I walked through the aisles enjoying some of the puppies around for adoption. Ready to leave, I asked, “Where’s Daddy?” And there he was, knee to knee – eye to eye- with Allie. “This is the dog I was meant to have,” he told me very matter-of factly.
Just a week or so after they met.
I came up with a litany of reasons why a second dog was a bad idea. ( We already had Lucky)
“What if they don’t get along?” (Solved in 2 seconds flat when they met outside Petsmart. They were fast friends.)
“We are having company for Meghan’s birthday next week.” (They offered to delay the adoption 2 weeks.)
“Our yard may not be big enough.” (We passed the home visit with flying colors.)
“We don’t have the money right now _” (I was grasping. The fee was so reasonable. And they offered to postdate the check a month.)
I lost.
But I won.
Big time.
Allie joined us on August 12, 2007. The guesstimate for her age was three. I suspect that was conservative. She stepped into our home with none of the puppy nonsense new dogs cause. She was trained, didn’t bite the furniture, or pee on the rug. She needed a little tiny training to settle down with her food. Easily done. And she really was the perfect dog.
Allie waiting until Felix wakes up
She was Felix’s dog from the get go. No matter where he went she followed. She slept on his feet at the TV at night. She waited for him on the weekends if he slept in. She sat at his feet when he whistled. She greeted him at the door. She knew it was he who had freed her from the cycle of adoption and fosters, and found her her forever home.
Her “tough” side – much like Felix’s, was put into check with the right love.
I took a bit longer to catch on. It took a few baths, and some nail cutting, and adjusting to calls from the groomers that they couldn’t service her. I had to understand her, her abandonment, and her need to trust again. Once I “got it,” we did just fine.
Mostly I fell in love with Allie because she loved my Meghan. I can remember nights, and there were so many sleep deprived nights, that Meghan would wake crying, and if we didn’t hear fast enough, Allie would come and get Felix and I and make sure we took care of her. She became so protective of Meghan – from “hide and seek” to watching her in the pool, to not resting until Daddy dug her out of the snow bank, Allie knew Felix was her master, and protecting Meghan was her purpose.
And how could I not love the dog that loved my two favorites?
Meghan, being without siblings, took to the dogs as her “furry sisters.” She always used the number 5 to represent her family.
And when she was sick, or hurt, or recovering, as she so often was, Allie was loyal and attentive always.
Being sick is the pits. Having Cowden’s Syndrome is horrendous. Having a dog or two to love you through it – definitely a bright spot.
There were so many nights. More than can be named. So many nights of tears and frustration and sadness and anger. Soothed by the love of a dog.
We love Lucky. Very much. But we always said Allie made Lucky a dog. Allie turned her in the right direction. Made her less neurotic and more normal. They were sisters. A good pair.
Cowden’s Syndrome just got a little harder to swallow.
Life just got lonelier.
Allie got sick fast. Maybe a few weeks of not being quite right. And a few days of really being laid up.
We took her to the vet Sunday. It looked bad. I took her back today. It was over. Her belly was full of fluid. Even without eating – 2 pounds heavier than Sunday. They didn’t offer to do blood. Or treat.
“This is it,” the vet said.
And Meghan and Felix came, and we sat as a family. And we said goodbye together. We hugged, and held, and loved and cried. Then we left.
Our world, and our lives forever changed. Richer for our experiences, more painful for our losses. For only those who love deeply, can hurt.
Thank you Allie.
Hopefully Grandpa Tom finds you. You two always got along. Cause I firmly believe I’ll see you both again.
It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years.
The life changing diagnoses of Meghan and I and the correlating surgeries and appointments. just about took control there for a while.
And Felix studied for and ultimately obtained his electrical license through the drama, and extensive, ridiculous hiccups in the process.
It all just blurred in and we never properly celebrated that accomplishment.
Meg changed schools. Well, twice now.
We changed churches.
And the car accident, and the back trauma.
The rotted bay window, and the pool with the hole in the liner.
The loss of my father after a brief, battle with pancreatic cancer that had life changing ripple effects everywhere.
I actually sat down to write a list at one point. Maybe I felt, albeit temporarily, the need to justify the un-returned phone calls, the missed dates with friends, the chaos shoved behind closet doors, and the overarching feeling of disorder in my life. I wanted a way to explain why I felt like I was existing, not living. Why every weekend was faced with catching up, and why we were missing each other. I wanted to explain to the world how I was nutritionally healthier and stronger than ever before, and excited about my new products, but I was/am struggling to get out of my own way.
But this year has served up some intense wake up calls and I am trying to give them my full attention. Because if any reality resonates clear it is the one that there is no guarantee of tomorrow on this earth.
I am not trying to be morbid. Quite the contrary actually.
It is that very realization that caused me to shred that list I was making. It’s counterproductive to dwell. We must press forward anyway. So why stay stuck in the past?
There is a point in your life where you have to stop. And look around. And focus on the blessings around you. This paradigm shift, while far from perfected, is a work in progress.
We have taken steps to transform the house, even if that stands in the way of clearing off the credit card bills. Because, we are not extravagant, and never will be, but living in a neat, clean, organized house, when done well, is easier to maintain, and therefore an investment in our time together
We have family. And lots of it. At 40 years old, I can boast 3 grandmothers and a grandfather. I am becoming more aware each day of the depth of the value of those relationships. In addition to those 4 great -grandparents, Meghan has 4 grandparents of her own. I am beyond thrilled that Meghan, now 11, has had the opportunity to have created life long memories with all of them.
And sometimes it is within thoughts of those closest to us, that we remember what is the most important.
And if I really remember who I am, I have to speak of my grandparents, most especially today Mom’s parents.
Early in my life, when things were jostled around and life was uncertain, they were there. We lived in the first floor of their 2 family for the most formative years. They fed us breakfast and met us after school. They took us to sporting events and school activities while Mom worked 2 jobs. They were just always THERE.
And Pop was there to fix things, and Grandma to play cards and cook with.
There were summers in Ocean City, New Jersey – the best summers of my life.
There was a whirlwind trip to Disney, and so many more adventures.
I remember them as a young child, watching them. They never separated, even for a few minutes, without a kiss goodbye and an, “I love you.” This practice, perhaps formed after a lengthy service in WWII, and a full career in the FDNY seemed rooted in their deep understanding that we need to appreciate each other here. Now.
And when we moved into Mom and Ken’s house there was the summer Pop and Grandpa Al sided the house.
And in my own house the woodwork. The beautiful labor of love that is each piece of trim, each windowsill, each doorframe. In his 80s when I bought my house Pop trimmed each piece, and even helped Felix put in the front door. He shared his craft with my husband, and did so with patience and ease.
So much of the last 40 years of my life revolve around Grandma and Pop.
Never a task too difficult. Never say no. Always giving. Always sharing. Always loving.
When I think about my list that I had started to write, and then I think about them, I get a bit embarrassed.
Born in 1919 and 1920 they have seen more changes in their lifetime than any other generation. They lived through the Great Depression, and participated in World War II. They spent years apart, in touch by letter, only to marry a few weeks after Pop’s return in December 1945.
They built a family, my Mom and my Uncle, and the family branched out.
Pop worked in the Fire Department, and at Zion. Grandma took care of everything else so that there was never a thing out of place.
During their life transformations like – no phone to cell phones, and no TV to HD flat screens, and so many more have happened and they persevere. Pop Emails and surfs the internet, and even carries a cell phone – though it’s rarely on!
Times have changed and things slow down a bit. But it’s still a huge highlight to stop in for a visit and chat.
And when he can, Felix still picks Pop’s brain for suggestions of things he’s about to try.
All my life I remember them doing. For everyone. All the time. They are the ultimate lesson in “pay it forward.” They are for me the ultimate reminder of those vows we make before God and family and friends on the day we marry. Regardless of the wording used, the sentiment is the same. They promised to love each other, in good times and bad, in times when there was a lot, and in times there wasn’t, in times of sickness and in health, and to stand by each other for as long as God gives them life together.
Love my Grandparents!Christmas 2009Grandma’s 90th birthday on 2010At Pop’s 90th birthday in 2009
And even in the toughest hours, they make it look easy.
That is almost 69 years of marriage as God intended it.
There are so many things I share. And there are some that just aren’t to be shared. But make no mistake about this.
I’ve learned how to be a better person, and a better Christian from my grandparents. I learned how to be a better wife, from my grandparents.
This doesn’t detract in any way from the love of all the other influential adults in my life, including my own parents. We learn different things from different people at every place in our lives.
But today, it’s about Grandma and Pop. And how their selflessness and pure love never cease to amaze me.
I pray that though all adversity, my husband and I may set the same example for our daughter.
We are deeply, thoroughly, and completely blessed.
And when making lists its far best to make lists of your blessings than your struggles.
At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.
That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.
Because sometimes you need to sleep, and think carefully before you type.
The surgery went smoothly. The surgeon did a fine job, and so did his team. It was not their fault we were delayed by hours. Someone else’s baby needed their attention. And I can respect that. He followed up personally, listened to Meghan, was cautious but not paranoid. His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.
Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together. Things on her skin – even band-aids annoy her. This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.
But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.” By the early afternoon she looked better. The surgeon said to watch her till 5. A fair number considering she didn’t hit recovery until 7 PM the night before. If she was still good at 5 PM he would clear her to go.
And then there was endocrinology. Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.
When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function. That being said, even when they aren’t damaged, they are often traumatized for a bit. Low blood calcium is OK for a few hours, but not a few days. Like everything else, the body needs all things working together for smooth operation. Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover. They had to just see if it tanked out. The decisions for her post op supplementation would be made based on these blood results.
So, she had blood drawn at midnight after surgery. Then there was the draw at 1 AM for blood sugar. Then there was a draw at noon. Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw. I insisted that was not the case. Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.
Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw. I waited until 8PM and started hunting down results. I was told that the ionized calcium had dropped from 4.8 to 4.3. I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3, Apparently the 6PM draw held at 4.3 There were two other tests, and I wanted the numbers.
Run around. Run around. Run around. Finally after much work and some heated conversations we got the numbers from the other 6:45 tests. The calcium held their own, indicating a drop off to be unlikely.
Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw. Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week. NOTHING overnight.
Now it was after 10.
The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium. At least I was able to respect that she apologized right to my daughter for muddying up the entire process and raising her anxiety.
The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.
The passing of the buck that took place around the endocrinology department – disgusting.
And this is the clean version.
Facilities. Doctors. People. Can rest on reputations previously earned. And then one feeds into another and that reputation carries them – sometimes too far.
We have been there, and done that. And we are far from done. So loyalty lies in individual treatment and care by individual doctors and nurses. There is no one perfect facility. There is no one perfect place. Not even in Manhattan.
We gathered our things quickly.
We were in the car at 10:45PM.
My wise daughter asked what the lesson learned.
I said,”Trust your Mom.”
My husband said, “Educate yourself. Advocate for yourself.”
I guess we are both right.
The ride home was tough. Painful. You use your neck for an awful lot of things.
But we got home in time to give her a well deserved Valentine’s Day Gift
She certainly is our Hero. And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night. Especially the one to “Trust your Mother.” For now I can be the advocate. She has to find some time to be the kid.
Valentine’s Day 2004 – our first hospital stay.Valentine’s Day 10 years later…
She walked away today. She broke the rules. She updated the plan. On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses. The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.
That didn’t last long… You only get a moment or two to pull it together. Then there was some really rotten cafeteria food, and WAITING.
They took her in at 3. Three and a half hours after she was scheduled. She was tired, and hungry. And more grown up than I am at 3 PM when I haven’t eaten.
What a whirlwind! Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed. Stupid Cowden’s Syndrome. Makes people quick to pull out whatever seems to be misbehaving. And (SIGH) they are usually right.
So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while. I thought there was no way it could stand in the way. The surgery was scheduled. She was ready. The throat clearing has reached epic levels.
Faith.
Faith that it was going to be fine. Initially faith that the storm would pass. Faith that we would arrive on time to an early surgery Thursday morning.
Then, as happens so often I was reminded that FAITH, is not about me. It’s not about my terms, or my time, or my way. FAITH is knowing, trusting, believing. that God will provide what we need. Whether it fits my plan or not.
So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.
HOPE
So much talk about HOPE this month. Rare Disease Day, and “HOPE – It’s in our genes.” Hope became necessary. The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in. (HEY, I never claimed to be perfect!)
Back and forth to the surgical team, to the social worker, the secretaries. Pleading. Help us. Hotel rooms that were available running several hundred dollars. Offers from loving people to pay the bill. But in the end money wouldn’t have stopped us. We would have paid whatever we needed. Because we had to be here. Right here. Right now.
So finally around 2 O’Clock on Weds. the call came. “We can put you up at the Ronald McDonald House for the night.” The fee – incredibly reasonable. The location- perfect. The reality – it was time to pack us up and be out of the house by 8.
Packing to take Meghan away is an adventure. It’s not the electronics, or the “stuff” but rather the food. Not even a major hospital can safely prepare Gluten, Dairy, Soy free food. So there has to be a cooler. Dad made fried chicken and plantains. I picked up a pound of a Boar’s Head staple. Cookies, granola, ginger ale, and other necessities. Showers for all. And Grandpa picked us up at 8.
We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time. I have to admit I was worried. Really worried about what I would find through the doors. But what I found was… love.
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I had heard of “The Ronald McDonald House- The house that love built.” But I never gave it any thought.
I have a new charity on my favorite list.
We were welcomed – almost embraced by love and kindness. There was a nonjudgmental compassion the radiated out of every staff member. We were given keys to our rooms, and a tour with the rules of the “house.” We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room. And, after she was given a backpack – with a special monkey, and a monkey blanket.
And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket. Her grateful smile. My heart – full of love in this house.
Our room was on the 11th floor. Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic. And there was the most beautiful view.
LobbyLobbyOur RoomView out the window
And as we each found our way last night into our own level of sleep, there was LOVE. Everywhere in the room.
We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.
View out the window on this “Beautiful Day”Waiting for surgery with the new monkey from the bag last night!
By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.
A beautiful chaplain met us this morning, and clearly spoke Meghan’s language. She compared God to a loyal dog… always there – forever understanding of our needs.
The doctors took extra time with someone else’s baby this morning. I am glad they have that level of compassion. I am glad they take their time.
Now they need to take their time with mine.
The last status update came 15 minutes ago. They only began around 3:40. Prep took a while. She is stable, but its slow going. What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules? Why make it easy.
Thankfully – she has some very special guardian angels on the case today. And the prayers of countless others.
In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”
Friends creep into your life at the strangest times, and under the most peculiar circumstances, but sometimes the people we are happiest to know are the ones who became friends when we weren’t paying attention.
My neighbor has a heart bigger than almost anyone I know – except maybe my daughter. She has looked out for all three (five with Allie and Lucky) in this house more times than I can count. She loves my little girl like she is her own blood.
Today she showed up with this ornament.
Apparently she made them, sold them. and brought the profits over for Meghan to donate to the charity of her choice.
She fills our lives with JOY – and is definitely an angel on earth.
beatingcowdens 