memories – beatingcowdens

The Calendar …

Published on November 11, 2021November 11, 2021 by beatingcowdens4 Comments

My birthday is a tricky time of year. This week is emotionally charged always. Emotions are right at the top. I simultaneously love and abhor my connection to dates. It is a blessing and a curse that I constantly strive to strike balance with.

I never thought much about my birthday growing up. There were often sleepovers and cake with family, but I never thought too much about it. Not about the day, or about the blessings of family, friends, and gifts galore. Somewhere in my youth, I thought it would last foever. I was always taught gratitude, and have penned my own thank you notes from a young age. But, I meant the matter-of-fact way things just happened. My mom worked 2 jobs. She worked hard all the time. But, she made time for those things as if it was effortless. I am pretty sure I might have missed some thank yous to her along the way. She never skipped a beat.

As a teen things changed a little. Our immediate in house family grew with the additions of Ken and little sister Kathi. Older sister Lisa was at college. But, still, I never gave the day much thought.

My cousin Meghan was born in May of 1985 when I was in 6th Grade. She was the absolute apple of my eye. She was the first child in my large extended family that I was ever old enough to babysit for. We spent a good deal of time together.

Meghan’s leukemia diagnosis came when I was a freshman in High School. The next 4 years for her were a perpetual whirlwind of remission and relapse, treatments, bone marrow transplants, and smart, silly kid time. She was wise beyond her years and loved on her little sister with everything she had. She loved our Grandma’s dog, and so many people loved her.

As a growing teen, I wanted nothing more than to be tested as a possible bone marrow match for Meghan. I was turned away, even as a first cousin, and told to revisit the possibility when I was 18.

The summer before Meghan died she gave me this picture after an afternoon at the local Children’s Museum. It hangs in my house still.

I left for college in August of 1991. I called and spoke with her as often as I could in the “pre-cell phone” era. And then our stories above became forever intertwined on 11/12/1991. A call to my dorm, on the morning of my 18th birthday, brought the news that Meghan had gained her angel wings. I was never going to know if my bones held the marrow that could have saved her life. That was a bitter pill to swallow. I was broken-hearted as I headed home for formal goodbyes, but I was buoyed by the fact that no matter how many years went by, her passing, and the celebration of my birth would be remembered the same day.

I never lost the feeling of connection to this spectacular, tenacious 6 year old whose ability to converse with those well beyond her years, to express her thoughts, and to bring joy to those around her was utterly epic. I never ever forgot New Year’s Eve together, setting all her dolls out on the couch, or the MILLION times we watched Lady and the Tramp.

Meghan was still in my heart in the summer of 2003 when I asked my aunt and uncle if I could name my child after theirs. That is Meghan’s name story. She was named after a warrior whose spirit she possesses. Their struggles differ but their giant hearts and no-nonsense speech sometimes are intertwined in my memories.

Our Guardian Angel wears a gold ribbon. The power of this has also not been lost on me. Childhood cancer is it’s own kind of hell, for the parents and the children. We, as Cowden’s Syndrome patients have astronomically high cancer risks. Ones that can get into your head if you’re not careful. But we have what is not given to most. We have a warning system. And through that warning system our cancers, if they occur, can be easily managed most often. We have a gift others were not given, even in this messy road.

The story of our Meghan has had so many twists and turns these last 18 years that many blend together.

Through those years we said goodbye to many grandparents. Among them, my father, Ken’s father, my mom’s father, and my dad’s father. That group of veterans were life-shaping as well. And, with Veteran’s Day being this week too… sometimes the proud, and the grateful, and the sad get mashed together.

And November 10th, the birthday of the US Marine Corps fits right in here as well. I do not profess to fully understand, but watching my Dad reach out to every Marine he was still in contact with on 11/10/2014, a month before cancer stole him, it imprinted on my heart.

I’ve never been a big fan of fall. Or, maybe I was when I was a kid. I don’t remember. But, somehow the darkness and the dreariness and all the memories seem to feel heavy this week.

So I try to think of the joys that have intertwined with the sorrow. I think of 11/12/2014 when Meghan received “Kid of Achievement” award at a very special ceremony.

I think of my little second cousin Mackenzie, my birthday twin, just a TON of years later, brought into this world no doubt with some careful guidance by Angel Meghan and some others, whose memory Mackenzie’s mom and I both hold dear. That precious girl, born after tragedy had already touched her life, has the most magical smile. Oh, I wish I saw her more.

And last year, we took the day as a family of three and had a delightful senior photoshoot for our one and only, also on 11/12.

All of these memories are somehow connected to this week. And as I think about my birthday I am grateful for another journey around the sun. The numbers don’t flip me out. I will scream loudly and proudly that I am 48. I am a mother, a wife, a sister, an aunt, a cousin, and a cancer survivor. I am grateful.

This year though, on the 30th anniversary of the passing of Angel Meghan, I pause a little extra.

Some people come into your life only for a season, yet they leave an imprint on your heart that lasts a lifetime.

As I head into my 49th year, I am grateful for those I have loved and lost, and for all I have learned. I look forward to more adventures. I hold my dearest close. I shed the nonsense. I avoid the drama as best I can.

I am far from perfect. Perhaps my biggest life lessons come from basking in that imperfection, embracing those I have loved and lost, and those I still love today. Taking the lessons learned from all and carrying them forward.

Time waits for no one. Semester one at college is almost in the books. My girl is where I was the year my Guardian Angel left this earth. 30 years since I started college. Life keeps moving.

Honor the lost. Embrace those that are near. Live in gratitude and be full of grace as our God is to us. Lead with compassion and a kind heart.

May the fall be full of blessings for you.

We remain #beatingcowdens.

Blessings, Irony and Tears… March 3rd

Published on March 2, 2017March 3, 2017 by beatingcowdens2 Comments

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.

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 — 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?

Love you always…

“What are you celebrating?”

Published on January 20, 2013January 20, 2013 by beatingcowdens3 Comments

I am awake earlier than the rest of my family. My big dog took a container of Meghan’s gluten, dairy, soy free chocolate chip cookies off the counter last night while we were out. I think she will be fine. She just had her second dose of activated charcoal, and she seems to be resting comfortably. But. EVERYONE knows who the Mom is when they are sick – so she and I BOTH had a long night. (and I am sending her Daddy out to clean the yard! :-))

Allie - The Cookie Monster — Allie – The Cookie Monster

Last night we headed to Manhattan where we celebrated Felix’s sister’s 50th birthday. It was a crowded room, and although the food was quite good, I had a tough time being so cramped in. My little girl, as usual amazed me with her calm, patience, and poise. I asked her before we left of she wanted me to ask the restaurant to cook for her. She said she wanted me to pack her dinner. She doesn’t trust very many places to “get it right,” and she did not want a belly ache.

So. she put on her fancy dress. The one she is so EXCITED to wear to the Father/Daughter dance hosted by her school Monday night. I put her hair up and stepped back. This child has always been mature beyond her years, but when did her body start to catch up?

We sat, for a few hours. There was minimal time to walk around, but when she did get to talk she vibrantly retold the story of how she lost her last baby tooth, and the Tooth Fairy left her $20 and a Tigger pin! Way to clean up on the last tooth, None of the others were worth that much!

Magic. She brings it back into our lives. She rounds out her father and I. She is a princess. Yes, she has just about everything she has ever asked us for, but she has a whole lot more. She has compassion, patience, maturity, and wisdom. She has kindness and generosity. She takes pleasure out of making people happy.

My mother always said, “Children should be spoiled, just not spoiled rotten.” Doing our best Mom. It seems to be working out ok.

Before I started writing this, I was searching the Disney website. I was playing around with prices for a summer trip. We have taken Meghan to Disney in August (usually for her birthday) every year since she turned 5. My house has photos in every room that remind us of our adventures. We have had the happiest of times at Disney. We enjoy each other. And, I have to say, the year my parents joined us, was one of the best vacations.

We started going to Disney because of their accommodations for allergies. It is almost impossible to maintain a gluten, dairy, and soy free diet for a week without staff trained to take every allergy very seriously. And while we struggled a bit last year to find “quick service” food for her, on the whole we have had only positive things to say about our Disney dining experiences. When you have a child with allergies, you plan your trips a little differently. Everything else falls into place, AFTER you know they will be well fed.

Disney also accommodates her chronic joint pain. Even with the Celebrex she could not endure the miles of walking we do each day. She travels Disney – walking some, but spending the majority of her day in a portable wheelchair. We always get a room on the first floor to avoid extra steps, and in the event those knees give out, every park has everything from Advil to heating pads to help with the pain.

Not to mention the Magic. I believe in the wonders of Disney. I believe in the smiles of hugging Chip and Dale, and Mickey and Minnie, and all their friends. I believe in the smiles on my girl’s face. I believe in the memories we are making – that no one can ever take from us.

So, this morning when I ran the prices of the trip through the computer I choked a little. It, like everything else, has gone up a good deal since last year. And, for a brief second the thought of not going crossed my mind.

I mean, the deck needs major work, we still haven’t finished the upstairs. There are plans for the basement to be redone, and the backyard needs help. What about that awning for the blistering sun in our back yard. Plus, this year forced us into a new car, braces….

Then I saw the question in the corner of their website. It said, quite simply, “What are you celebrating?”

Well, that did it. We are celebrating all right. We are celebrating Meghan’s negative biopsy. We are celebrating the knowledge we have gained from our Cowden’s Syndrome diagnoses, and the ability to “strike first.” We are celebrating that after a long stretch of studying, they offered the Electrical licensing Exam, and Felix passed part one on his first try. We are celebrating the love of friends, the kindness of stangers, and the compassionate heart of my little girl. We are celebrating the power of God and the Holy Spirit to lead us to a place we worship together as a family each Sunday. We are celebrating “more birthdays” as Meghan will turn 10 and Felix 40 during that hot August vacation. And I could go on and on with the thoughts that flooded my head in reply to that simple question.

So today I will finalize our trip. I will be sure to get “trip insurance” in case life tosses us any more curve balls between now and then. We may not finish all the projects around the house this year either. But we have lived here for 12 years now, and its a pretty nice place to be. The projects, the bills – they will get paid for and finished.

The magic may not last forever. We have learned as a family to stop and enjoy the ride. We are celebrating our countless blessings. God is good. Life is good. Family vacations are worth celebrating.