What if we all tried to really take a minute and put ourselves in the shoes of someone less fortunate? Not to beat ourselves up, but to build each other up. Imagine how different things would be.
Nothing kills the buzz in a room like the chronically ill. And, like any subgroup of people, there are the self-absorbed attention seekers among us. But, most of us, when we go through the difficult times, are able to offer the world desperately needed kindness.
Some days the fact that compassion fatigue has become normal hurts my heart.
What if it we normalized our own struggles while also acknowledging the struggles of others?
What if we held each other up instead of cutting each other down?
What if we showed compassion and human decency without any expectation of what we would get in return?
What if we all decided to “pay it forward” and speak and act with kindness?
What if the “golden rule” my Grandma referred to over and over was common practice?
I’m guessing the world would be better, softer, and more comfortable for all of us.
I’m getting older. My circle is getting smaller, and my heart is getting softer. I am grateful for all of those things.
Rare disease has beaten this body for over 5 decades. The storms have been relentless. And I am still here. My heart has been broken, and I have cried rivers of tears, but I am still here. Through those dark days I was never abandoned and never truly alone.
What if we focused more on giving others that sense of peace and love?
Maybe we should take lessons from these three? They are all different breeds, with different strengths, adopted and brought together in love. They treat each other like siblings in every way.
They never go away. Your experiences, that is. Our lives are literally made of them. And in all of our lives, some are happy, some are sad, others are joyful, or sometimes traumatic. We can’t change them. The glue that holds us together is how we deal with them.
After I crested 50 I became more introspective. I guess the decades between 2003 and 2023 saw most of my existence in survival mode. I would look at my friends with multiple children and think, “that must be so hard.” And I am sure it was. In a moment I can be full of empathy for anyone in any situation. What I never realized, or thought about, or spent too much time on was that our life was a daily challenge to survive as well.
Comparison is a devil’s tool in my opinion. So, I try my best to leave it alone. And in reality it doesn’t matter how you see someone else’s life or how they see yours. Social media is an illusion, and even this blog is often carefully worded to step over the darkest parts.
I only know my own life. And as my girl has grown, I have more time to reflect, and make changes as I need to. I am learning to give myself grace, to focus on my strengths and to set limits. I get tired. And allowing myself to feel that sometimes is a big step.
However, life is about balance. And negative speak drives me wild. I’m not one who likes to say things that are untrue, but I push to find the best in anything. Sometimes I fail. Mostly I succeed. Always, I try.
I spent decades holding myself together with superglue. And it gave me perspective and gratitude that allow me to be alone with myself a great deal, and still have peace.
We only get one go round on this earth, we might as well make the best of it. This earth is far from all I have, and I live with joyful anticipation of heaven, whenever God sees fit to take me from here. But, while I am here…
I am full of gratitude for my husband of 25 years. He is often the unspoken hero in our Cowden Syndrome tale. He has done more behind the scenes work to keep us afloat than anyone besides me knows, and he prefers it that way. The fact that we not only love each other after this many years, but we also still LIKE each other, well, that is everything. We share goals and hopes and dreams. And we share our love and respect for our feisty young woman.
I am grateful for survival. I am not sure why I was fortunate enough that my breast cancer was caught so early that I required no treatment beyond my surgery. But, in this pink washed month I am reminded of those who were not so fortunate. I am reminded of the wonders of modern medicine. I never forget the doctor who diagnosed our PTEN mutation, and the urgency with which he spoke to me, telling me of the cancer risks that “peak right around 40.” I am thankful that my daughter’s breast changes were found at such an early age, and that her screenings began when they did. I am amazed at her strength as she chose to get in front of her virtually inevitable breast cancer risk.
I have a hard time fitting in in groups. It’s not because I don’t like people. It is because a lifetime of a complex medical history, a daughter with a complex medical history and a rare disease diagnosis left little time for hobbies. I cannot relate to people too easily. My girl’s youth was definitely not “typical” of today’s world, and truthfully I don’t fully understand a lot of this world. It’s not necessarily a better/ worse situation as much as it is a very different existence.
Medical trauma is real. That I know for sure. I am exhausted. I am forever changed. But, I’m not mad about it. It just is. Like I said before, you get one go round on this earth. You get one body to work with. You do the best you can with the one you have. If you know you know, but if you don’t that’s actually better for you. It makes me happy, albeit confused, when I have to remember that there are people my own age that have never had, a single surgery, an MRI, a CT scan, etc. It doesn’t mean their life was easy. But, it does mean perhaps that we use a different brand of superglue to keep ourselves together.
Meghan calls me from her Physician Associate program in PA often. We talk several times a day and text throughout. Maybe that’s a mother/ daughter thing, but I don’t think so. I think it’s a friendship that has been forged by a similar life philosophy and work ethic. I think it is a product of our shared experiences, and the desire to make the best out of the lives we have. I know she makes me better. A better mom, a better teacher, and a generally better human. I think I do the same for her.
For a while I wondered if it wasn’t good for her to be this close to me. Now I know that’s nonsense. I think we all seek people who “get” us, and situations where we can be real. It’s not a place where any of us can live 24/7. We have to survive in the real world, meeting people from a vast variety of experiences where they are. But, I like being her landing spot, a place she always knows is ready for her, and a place where she is secure enough to be herself.
I am unapologetically proud of my daughter. My heart bursts when she explains how she works to do better, and to be better. She fully understands that we all are a work in progress, and she actively focuses on understanding her own strengths and weaknesses. She is a realist. She is honest. She is driven. She is tenacious. She never quits. She tucks and rolls through adversity like it is her job. (And, well, maybe it has been.) She is compassionate in a way that blows my mind.
She is so compassionate that at one of the most vulnerable junctures in her life, she parted with her own superglue, her service dog Ella, so that Ella could have a better life. Ella and she grew up together in college. Ella sat through classes, and exams, and up and down moments in Meghan’s day to day life. And, when things weren’t quite right with Ella and her overall well-being, my girl put HER girl first. Ella is retired now, living comfortably with us and her two furry brothers. Meghan soldiers on without her bestie by her side. She is forming her own superglue from within the cells of her rare and spectacular self.
The three furry siblings on the way home from visiting Meghan.
Recently we took Ella for a “Retirement” photo shoot. Natalie https://natalielicinicreative.com captured the love these two have for each other in a most magical way.
If you’ve read this far, thank you. I started this blog over 10 years ago to chronicle our journey. And I have not reread a single post. I have worked so hard pressing forward, and sharing our story in the event it could help someone else, that there has been no time to look back. In truth, there’s not point. We’re not going that way anyway. So from wherever the 285K plus hits on this blog have come, thank you.
In fact, as I reflect, blogging has kept me sane. Putting my thoughts together helps cleanse my crowded head and focus myself on the important things. And I think, being able to focus on what matters, is in fact my own superglue.
It’s really a dizzying vacillation between the two. So much time is spent at the red flag, laser focused, all hands on deck stage, that when there is a pause to give some time to breathe, and maybe look for the butterflies, I am the most lost. Sometimes the pause is hours, sometimes days. Occasionally it is weeks to months but rarely longer. And just about the time I start to notice the butterflies, we are tripping over red flags again.
This is life with Cowden Syndrome. This is probably life with many chronic and/ or rare diseases.
Meghan went back to college 8 days ago. She is adjusting, despite some need to still heal physically, and emotionally, she is pressing on as she always does, now mere weeks from her Bachelor’s Degree and the start of her Physician Assistant program.
We talk every day. And I love that. It doesn’t matter who calls who, or who texts who. It just feels natural to be in contact. I am here to listen when her anxiety is high, and when she is celebrating her successes. And she does a lot of the same for me.
We are interconnected in a way many can’t (or won’t try to) understand, at this time in life where we are both hoping to find and establish ourselves in the next phases of our lives. I am a few years out from retirement and she is ready to prepare for career of promise as a Physician Assistant.
I laugh with her on the good days, and I cry with her on the not so good days.
Many years ago when she was months old and slept poorly, our pediatrician once told me I should leave her to “cry it out.” I fired him. For us, this is the better way.
Anxiety is my biggest burden to carry these days. I try to tame it, but I often fail. I label it. I call it out for the useless freeloader that it is, but it is not ready to leave me. Not yet. I think that comes along with this rare disease thing too.
Fight or flight. Lather. Rinse. Repeat.
If I do not stay diligent we miss something. If I do not listen to my daughter, we miss something. If I do not stay up on the screenings we miss something. If I do not stay attentive to my own PTEN body as it ages, I miss something. Anxiety is my constant companion these days.
I cry. I laugh. I scream and yell. I feel all the feelings. And there are SO MANY.
I think that is how I survive, and how I remain helpful. I don’t think I have the luxury of keeping my head in the sand or ignoring the realities. We have a lot of work to do to stay at least reasonably healthy.
Being a PTEN patient can feel scary. This world can feel even scarier.
One day I will figure out what I will do with my the time in between the red flags. As I get to spend more time with the butterflies, I will figure it out… and I am looking forward to it.
Today though, I will check in on my college girl one more time, forever grateful for her strength and fortitude. I will pray for peace, and guidance for how best to live as a patient, as an advocate, and as a Christian in this crazy world.
Paying attention is exhausting, then again, so is…
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 2009
Grandma’s 90th birthday on 2010
At 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.
beatingcowdens 