Birthday – 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.

Happy Birthday Dad

Published on April 17, 2014April 17, 2014 by beatingcowdens8 Comments

** I rarely go off the topic of Cowden’s Syndrome, but this is just so necessary. Tomorrow April 18, 2014 my Dad would have been 66.**

Dear Dad,

It’s hard to imagine a year has gone by since you sat at my dining room table. We shared pizza, and red wine, and ice cream cake. And you, who had eaten in some of the most gourmet restaurants around, were so gracious, and thrilled to enjoy a simple dinner with Meghan and Felix and I in honor of your birthday.

You even tolerated coffee from my Keurig with a warm smile.

I still remember that night as if it was yesterday.

"Don't take out the knife!" — “Don’t take out the knife!”

And here I sit a year later… in awe of all that has gone on. Stunned that you aren’t here to celebrate.

Thinking back your year is proof positive that we need to live each moment with the knowledge there is no guarantee of tomorrow.

But, you knew that. You learned that lesson many years ago as a young Marine in the jungles of Vietnam. Then, you lived it. And you learned, and you grew, and you learned some more. But, you lived each day without malice in your heart, and with the never ending desire to do the best you could with what you had where you were.

We didn’t always have it quite right, Dad. There were years where you weren’t around too much, and I missed you. And I’ll admit to even spending some of those years a bit angry. But, I grew up.

And Mom, she did the right thing. I got to work through it all, and come out better and closer to you in the end. Heck. I made out like a bandit, because when Mom married Ken, I got to enjoy all the benefits of two Dads. Not a replacement – either one, but two! What a lucky girl…

When you came back to Staten Island a few years ago I was thrilled. Now, a mile away from my house, I got to see you more than I even had before. You got to see Meghan. And I watched a relationship blossom between you.

You were there for her dance recitals, and some swim meets. You watched her on days off from school. You taught her chess.

You got some time to get to know her during years when life had kept us apart. I felt so much closure. So much love.

You smiled all the time when you were with her, and that smile is what she carries with her each day even now.

Even when we didn’t see each other, we spoke. A lot. I loved bouncing ideas off of you, and even when we didn’t agree, I loved hearing your point of view. You always HEARD me. You never JUDGED me. You listened intently to mine and Meghan’s medical issues, and I valued your perspective. I looked forward to talking to you. Especially on the cell phone (hands free of course!) on my way home from Whole Foods. Your voice always gave me energy after a long night.

Except for that one night. When I called you on a Friday from the road back from Whole Foods, and you told me you were in ICU. Stunned, I told you I’d see you in the morning. You said I didn’t “have” to come.

We spent a lot of time together those days as they ran test after test. You were getting edgy. A caged bird.

I took you home after the answers stayed sketchy. But I was worried.

You who could walk miles. You who could work countless hours. You who was always busy. You were tired.

Your skin told the tale of jaundice. Your eyes were tired.

Meghan asked and asked to see you. You put her off. You wanted to feel better.

Then on Halloween we got a 5 minute visit…

And even though she was worried about you, that hug carried her for quite some time.

There were appointments. Back and forth. I was so grateful to be able to take you. And I was so thankful for the time we had – to talk about everything and anything.

We had some easy conversations, and we had some of the hardest conversations I will ever have in my life. But I am grateful for every one of them.

You see I always loved you – but not until those last months did I really get to know you.

“I always wanted to exclude you from my pain, never my love. But the two became one in the same.”

And in that moment there was peace. You spoke what I knew. In very few words you elaborated on the Marine who returned from Vietnam, forever changed. You told me about the hurt, and the heartache, and the fear. I learned later the scope of the losses you suffered through, and the horrors you experienced. No wonder. No wonder at all.

The months got all garbled up. There was Shane, in to stay for a while, at exactly the right time. There was Lisa, at the ready to drive anywhere we needed to be. your “team” converged, got our acts together, discovered our skill sets and became unstoppable.

Road Trips to Columbia Presbyterian. Gut wrenching diagnostic testing. Your strength – surreal. Your focus – laser sharp.

You were back to survival mode. A Marine in the jungle. We were in awe.

That last week at the VA was torture, and therapy all at the same time. You had made your wishes clear. We knew the mission. We just didn’t like it one bit.

And when the angels grabbed hold of you on December 4th, and we knew that you were finally able to rest, there was a painful peace among us.

The days of your funeral were surreal.

The days after it just as intense. So many people had to be notified. Somewhere in your 6,000 contacts we found the strength to reach out to those who loved you so.

Perhaps if I had one wish, one regret- it would be that you didn’t know how much you were loved. By your family, and by those whose lives you touched on a daily basis.

You changed people. Your impact was intense.

You suffered too much Dad, with the physical, and emotional traumas of a war fought as a young man. For 45 years you bore burdens too intense for the strongest to process. You were tired.

You told me once about Cowden’s Syndrome to never let it define Meghan and I. You told me to listen to my heart and my gut, just as much, if not more than I listened to the doctors. No worries Dad. I haven’t forgotten.

I am sad that the cancer reached up and snatched you away – with no warning. I am at least in that way grateful for the warning system that is Cowden’s Syndrome. But, don’t worry Dad… I will never forget.

You know in the months after you died I reached out to your Marines. The few you spoke a little about, and the ones I had never heard of before. There were photos, and then names, and then long conversations. They, each of them a gentleman, called me upon hearing of your death. With some I laughed. With some I cried. With all I felt a bond. They were also your brothers, each one. I learned the meaning of “Semper Fi” in those conversations. More than 45 years later they wanted to know what they could do. And they meant it.

You would be so proud to know. You are remembered. Not as a saint, but as a good man. A man who made mistakes, and owned up to them. A man who loved, deeply. A man who desired to make the world better. A man who taught by living. A man who saw beauty through his camera lens.

You made a difference; to your Marine Brothers, to your parents, to your children, to your grandchildren, to your siblings, to your nieces and nephews, to the friends form all walks of life who loved you so, to the people you worked for, to the people you worked with, and to the people who worked for you.

We played music the day before you died. You smiled. We laughed. That is the spirit I hold close in my heart – even through my tears.

Happy Birthday in Heaven. Give Angel Meghan a kiss for me.

Semper Fi Daddy. Always faithful. Until we meet again.

All my love,

Lori

My Guardian Angel wears a Gold Ribbon

Published on November 11, 2013November 11, 2013 by beatingcowdens4 Comments

My Guardian Angel is 6 in my heart. That’s the age she was the day in 1991 when she got her angel wings.

My Guardian Angel was tenacious. She was fun and feisty. She was strong, and wise beyond her years.

My Guardian Angel battled leukemia for four and a half years. She endured chemotherapy, spinal taps, bone marrow transplants, remission and relapse.

She loved watching “Lady and the Tramp” and she loved her baby sister. She loved stuffed animals, and my grandparents dog “Bo.”

My Guardian Angel was the first kid I ever got to really babysit for. We had some fun times.

My Guardian Angel is my cousin Meghan. She changed my life when she was born in 1985- and I lost a piece of me when she passed away in 1991.

My cousin Meghan went dancing with the angels the year I started college. It was snowing. It was my 18th birthday.

My love for Meghan and the deep loss permeated the next few years of my life. The pain never ever goes away- it changes you. But I decided that I would strive to be more like her. I would take her example of grace under pressure and model my life off of it.

"Angel Meghan" - 1987 — “Angel Meghan” – 1987

We were already forever intertwined and then she met Jesus on my birthday. The bond- the link- is unbreakable.

My Meghan was born a decade ago. She makes her namesake proud. She shares her strength, grace and wit. She endures medical challenges beyond measure. My Meghan has an angel on her shoulder too.

And over the last few years as the reality of Cowden’s Syndrome and it’s lifelong implications set in- Angel Meghan keeps me grounded. Whenever I want to be frustrated about the cancer risks we face- I am reminded that we are afforded a warning system. I am reminded that these sometimes grueling routine screenings have already proven life-saving for us. I can only imagine how desperately my aunt and uncle would have loved the warning system- and the prevention opportunities we have.

I wonder sometimes- what my cousin would have grown to be. I wonder what the 28 year old would be doing with her life. And then I stop.

Mine is not to figure out the plan. Mine is not to understand the hows and whys. My role is to take the lessons learned, and the people who have taught them and make them part of who I am today. Mine is to keep the memory of a special young girl alive- in my heart, in my life, in my actions, and in my daughter.

So as I brace to celebrate my 40th, on a day when emotions promise to run high, I remember.

Sweet Guardian Angel Meghan, flying with your gold ribbon friends.
Forever young.
Forever loved.
Forever remembered.
May 16, 1985- November 12, 1991

“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.

The Changing of the Calendar

Published on December 31, 2012December 31, 2012 by beatingcowdens2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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