“Super” Man

Published on March 6, 2016March 6, 2016 by beatingcowdensLeave a comment

**Pop brought a smile, love and humor to our lives.**

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.

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 — **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…”

Meghan’s Rare Disease Day Video and Speech 2016

Published on February 21, 2016 by beatingcowdens3 Comments

This is the text of the speech Meghan delivered at this year’s “Jean’s for Rare Genes 2” Fundraiser. Regardless of the monetary totals, which will come in the next days to weeks, I can assure you it was a success.

I want to start by thanking you for attending this fundraiser here today. This is the second “Jeans for Rare Genes, a tradition I hope continues to grow each year.

I knew nothing at all about Rare Diseases until the fall of 2011. I was in 3^rd grade. I went to a geneticist because I was having all sorts of medical trouble. He diagnosed me with Cowden’s Syndrome. A few weeks later he diagnosed my mom with the same thing.

Cowden’s Syndrome is a mutation (a break or a mistake) on the PTEN gene which is a gene that is supposed to keep the body from making tumors. Basically, when you have Cowden’s Syndrome, which is pretty rare (only 1 in 200,000 people) your body makes tumors. Sometimes they are benign, and sometimes they are cancer. It also causes my body to make vascular malformations, like the one in my right knee, that has caused me 6 surgeries all by itself. That is why with Cowden’s Syndrome we have to be watched all the time. There are so many doctors, so many things that need to be checked, and scanned and looked at, it can be really overwhelming.

You can’t catch Cowden’s Syndrome, it has to be inherited, like I got it from my Mom. You also can’t get rid of it. Once you have it, the only thing you can do is get checked, a lot.

I have had 16 surgeries so far, and I only turned 12 in August. That doesn’t even count for the doctor’s appointments, Emergency Room visits, scans, and never-ending blood tests.

When I first learned I had Cowden’s Syndrome, I went to a website called the Global Genes Project to learn of facts about rare diseases. I learned all sorts of interesting, and sometimes upsetting facts.

There are approximately7,000 different types of rare diseases and disorders, with more being discovered each day
30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the S. population
80% of rare diseases are genetic in origin
Approximately 50% of the people affected by rare diseases are children
30% of children with rare disease will not live to see their 5th birthday
95% of rare diseases have not one single FDA approved drug treatment
Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

I started out feeling like I didn’t fit in anywhere. I couldn’t understand why all these diseases existed and no one seemed to know or care. I found the “Global Genes Project” motto, “Hope it’s in our Genes” to be a comforting play on words. I identified myself with the denim ribbon, a powerful symbol of Rare Genetic Disorders. My Mom’s friend made me a denim ribbon necklace, and I felt like I had an identity piece, something that represented me.

At first I organized an assembly at my school, and in 4^th grade we gave out denim ribbons to raise awareness. In 5^th grade we had a fundraiser. We sold some T-shirts, and had a small event at the school. The money went to the Global Genes Project.

Last year, a charity was created called the PTEN Foundation. It is the first charity that looks to help people with our specific disease. They want to create a patient database, so people with our Syndrome can be studied and learned about. Then, maybe there will be a way to help us.

As happy as I was about the PTEN Foundation, by this time, I had learned about a lot of other Rare Diseases, and kids, who didn’t have a chance to live and do as much as I can. I promised myself I would always remember those kids when I did any fundraisers.

Last February, “Jeans for Rare Genes” happened at the Hilton Garden Inn. I wasn’t sure I could pull off anything that big, but with a vote of confidence from Borough President Oddo, and my Mom supporting my vision, it happened. 150 people showed up, and we raised over $12,000. True to my word, half of the money went to the Global Genes Project, and the other half went to the PTEN Foundation.

This year, I invited Bob Jackson, my favorite entertainer from Walt Disney World, to come and play piano at “Jeans for Rare Genes 2.” He is here with us today and I am so excited! We also have “Charlie Balloons,” back to help us again, and lots of great raffles from generous donors. This year, I think and hope we can raise a lot of money to send to the PTEN Foundation and the Global Genes Project.

One of the hardest parts of having a Rare Disease is one I don’t like to talk about too much. Middle school is tough enough, but when you spend more time at the doctor than at social gatherings, it gets tougher to fit in. I am glad that with Cowden’s Syndrome I don’t “look” sick, except it makes it even harder for people to understand why my life is so different.

I’ve gained an appreciation for the reality that “everyone has something,” and I work hard at not judging others, because everyone is fighting their own battle. I want to make more people aware that this is the case, and that is why raising awareness for Rare Diseases is so important to me.

The pressure of life, the surgeries, the hospitals, the worrying, the waiting, and the wondering, has done a lot to make me who I am. I don’t wish for anyone else to really understand this pressure, but I sometimes wish more people would understand me.

I have met a handful of people along the way, some in the most unlikely places. These people have provided me support through the pressure, and I am forever grateful.

I know I still have a lot of time to grow into the person I am supposed to be. I love swimming, and drama and singing. I do well in school, and I love being with my friends. I love helping others. I will continue to search out my “Corner of the Sky.”

As you watch the video I have prepared for you, you will see that despite the pressure of life, I will not ever be defined by my disease. I am determined to focus on a brighter future, and to channel my energy into making a real difference in this world.

I look forward to seeing what the future hold, and how the next chapter in my life turns out. I hope to see you at our event next year!

When you’re through reading take the time to appreciate her video, created by herself!

The Best You Can…

Published on January 24, 2016January 24, 2016 by beatingcowdens2 Comments

Friday we met a good doctor. A new endocrinologist. He is young. He is friendly. He is smart. He is ready to be a doctor to Meghan. I am grateful.

Friday Mom got her second cataract done and checked before the storm. So necessary for more than visual acuity. It just needed to be done. I am thankful.

I was about to say today was one of those days where you have to focus on your perspective, and it will define your outcome. But, really that’s every day, isn’t it?

We woke up under about 30 inches of snow here in NYC. Now the thing about living in NYC is that you have to learn, as the Marines say, to “Improvise, Adapt, and Overcome.” Because nothing really stops. At least not for long.

Yesterday there were travel bans. Yesterday we were to stay off the roads. Today we are told that the City’s 1 million school children will report to school tomorrow, and with them, their thousands of teachers and support staff will report as well.

In many boroughs this is not such a big deal. Public transportation is at the ready. Moving around is easy.

Not the case here on Staten Island. Almost everyone travels by car.

Yesterday Felix tried to keep on top of the snow. It was fruitless.

Last night an ambulance got stuck in front of my house. My husband and a neighbor dug them back to a main road. We said a prayer for the person they were headed to, and continued on our night.

This morning, we woke early got the shovels and the snowblower. He started at one end, and I at the other. But in the front of the house I was met by my neighbors. We groaned a bit, and pleasant conversation ensued as we gave each other a hand.

At one point the conversation turned to Meghan’s footwear. Somehow. And as I explained that she has 2 different sized feet, and we buy 2 different shoes and toss the opposites, she seemed stunned. And I said soon after we toss the opposites we sit for a moment in gratitude for 2 working feet, and a financial situation that allows us to pay our credit card bills. She smiled. She gets it. She’s had life struggles of her own.

We got the cars free. We set ourselves up to hope for the best for tomorrow.

Then Felix headed with Ken to shovel out my grandparents.

Grandma, when memory came easier to her, used to sing, ” Count your many blessings, count them one by one…”

Grandma is 95 and Pop is 96. Life is more challenging for them than it ever was before. Yet there are so many blessings. They have neighbors that help clear pathways when we can’t get to them. They have a tenant who is a friend, who looks in on them and keeps us posted. They are really special, and we are grateful for the kindness of those they interface with daily.

When he got home, my husband stole a quick meal and headed out to make an igloo and a snowman with Meghan, after a romp in the snow with the dogs. He is a good husband, and a good Dad. A really good man.

Some time this afternoon my phone rang. It was an internet friend looking for some reassurance. I think I was able to give it. Keep your heart and mind focused. Stay physically, mentally, and spiritually healthy. Do the best you can with what you have, where you are. Always.

Tomorrow Meghan will see the knee surgeon. Time to follow-up on a less than stellar MRI/MRA experience the week before last. Time to check on the status of the AVM. Holding my breath that it’s behaving. Tomorrow I will hope all the main roads from here to NYC are plowed well, and I will gratefully pay to park in an overpriced lot. Perspective.

We are actively engaged in “Jeans for Rare Genes 2,” working on everything from ticket sales to journal ads to raffles. My Meghan is ready to channel this week’s pain into a focused goal. Meghan wants the PTEN foundation to have the money they need to create a patient database. Vision.

Every day we are given a choice. Many choices. Life is not all peaches and cream. Not for any of us. Some days I struggle. Most days I know which side of the bus the sit on.

Here’s to hoping for an easy safe parking spot at work tomorrow, a mind eased from the worry of loved ones, and a smooth trip to NYC.

Local Newspaper Coverage

Published on January 20, 2016January 20, 2016 by beatingcowdensLeave a comment

This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.

http://blog.silive.com/gracelyns_chronicles/2016/01/post_23.html#incart_river_mobile_home

Unsung Hero

Published on January 10, 2016 by beatingcowdens5 Comments

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.

Relax, Nothing is Under (My) Control

Published on January 3, 2016January 4, 2016 by beatingcowdens1 Comment

Today I dropped my daughter’s iPad. Down a flight of stairs. With no case. I’ve never seen quite so many pieces on a screen. But, it still turns on. And somehow we all managed to remain calm. My husband set the appointment at Apple for Weds. night. Yes, we have “Apple Protect.” Yes, I know there may be a deductible. And, while I called myself several names, I was most impressed that all three of us remained very calm.

Maybe we are learning.

NOTHING is under control really, except how you handle the things that are out of control.

Yesterday I had the dog to the vet. In a little under a year since we rescued her, she has ballooned from 42 pounds to 65. I guess she feels content in my house. We must be doing something right. There was this rash on her belly. And $300 later, with a shot of antibiotics, some antihistamines, and this cone on her head – it’ll be ok.

Except in the middle of the night. Then she needs her Mom to love her cause she can’t get comfortable. But, hey, really sleep is overrated.

On Thursday we went to see the ENT. He checks Meghan periodically since the hospitalization 18 months ago to gauge how her reflux is affecting her throat. It was a bit redder than usual this time. So, we juggled a few medicines and left with directions to find a GI. Easier said than done. Our last one was fantastic, but she took a break from practicing, and our local options are less than fantastic. So we will seek, and hopefully find…

On Wednesday we had the 2 week follow-up from the biopsy. We left with a script for progesterone which is apparently our only option. It’s necessary to slow the growth of those precancerous cells, and hopefully get them to go away. Verified with the head PTEN researcher in Cleveland, through my local geneticist. I hate hormones. Hopefully she tolerates it. Hopefully the cells behave themselves. Three month follow-up, then we schedule the next biopsy. She needs another biopsy so we can have a “clean” one. That’ll be in June. Something to look forward to.

On Wednesday after the doctor, Meghan and I took the train from downtown to Times Square to see Daddy at work. This is truly one of the highlights of her year and there was no way we were missing it!

Favorite Family Picture! Wearing our "NEVER GIVE UP!" thegsf.org — Favorite Family Picture!
Wearing our “NEVER GIVE UP!” thegsf.org

On Tuesday we stayed home. She missed play practice. She was recovering.

Monday had started out full of energy – with a huge nail in my new tire. Thankfully the car has warning lights to tell me when the pressure is low, and thankfully I got up early, because soon after I got home from getting it fixed, she woke up. In pain. We ended up spending Monday in the Emergency room at NYU. All told about 8 hours, a CT scan, a chest X-ray and blood tests, they found an elevated WBC, and free-floating abdominal fluid. The doctor said it’s likely a cyst burst. She was vomiting so badly that morning I never knew WHAT had hit her. Just something hard. The fluid, in my very sensitive to her body, girl, was likely causing the severe pain – just being there.

Maybe it was triggered by Sunday’s Swim Practice at the Long Course (50M) pool on Long Island. Maybe not. We’ll never know.

Christmas seems like only a blur. Mom had it this year, a kind respite for me. Some time spent with the family. Some time to just be together. It was perfect. And I am so grateful.

The week has been wild, and I guess that’s why I’ve been quiet. But, I am proud to say we have laughed despite the chaos. I can’t think of a day this week I haven’t laughed so hard I cried.

NOTHING is under control. At least not under MY control. And I am going to TRY really hard to be more OK with that.

The schedule for 2016 will not lighten up even a bit. I have an ultrasound Saturday, Meghan has an MRI on the 14th and the knee doctor on the 25th. It will not slow down. I must stay organized, and healthy, and focused. I must continue to eat well and exercise.

Most importantly I must laugh. Often. With my family. With my friends. The adventures will continue. But

Happy New Year to all!

Overwhelmed

Published on December 17, 2015December 17, 2015 by beatingcowdens4 Comments

Someone tried to steal my credit card today. Online purchase of almost $1000. We are pros at this. Text alert. Call to Chase. Charge suspended. Crisis averted. We are pros at being hacked. One day I’ll figure out why. Right now I don’t have time. I’ll be busy calling E-Zpass, and all the other automatic charges on our only real credit card. Whatever. I have to laugh. Cause if I don’t I might cry. And that would cause a headache and be counter-productive.

I have serious attention issues. Probably because everything I touch seems to morph into a few more things to address. More phone calls, more emails, more papers, more appointments.

My life is not that bad. Truly. I know I’m in good company. Chaos abounds and if you don’t appreciate some of it, you’ll regret missing it. But, the thought that someone would want to BE me makes me laugh a bit. Or maybe they just think I’d be too busy to notice…

Yesterday Meghan was scheduled for a biopsy at 3:30 PM. That is a rotten time for any surgical procedure. It involves a full day of fasting, anxiety and the like. We arrived at 2:30 and got checked in. Then we waited. And at 6PM when I finally walked with her to the OR she was dizzy and light headed from nerves and a day of not eating. Hours delayed. Cause, why not?

It sucks that my 12-year-old knows what a biopsy is. It really, super sucks that she has had so many. It’s helpful that they’ve all been negative so far, but the notion that “luck” will run out at some point looms. She knows all about pathology and wonders if it will be back before Christmas. I am often struck by the notion that all of this is unfair. But, I have always hated the people, young and old, that whine about things that are “not fair.” The struggle not to become THAT person is real.

I write to bring back my focus. I write to get the thoughts swirling around in my head back into good order. I write because it makes it less awkward for the people who actually want to hear about our lives, but don’t know what to say. Some days the task of organizing these thoughts is much easier than others.

We are at a point that our lives are overwhelming. I don’t just mean busy, like in a typical, school, activities, homework, sports, etc. kind of overwhelming. I mean they are overwhelming in the medical sense. We are past the point where we can even really talk to most people about what’s going on. I get to kid around a little when I talk about needing my spleen tumors scanned again, or my implant lifted, but it’s hard to share the true tears of frustration I feel that I will have to do that with a new surgeon because mine sold her practice and is now out of network. I keep the tears I cried about that tucked away.

In fairness, what do you say when you are discussing the umpteenth medical procedure of your 12-year-old, when most adults you know have only had one or two surgeries or procedures in their lives?

How could I expect someone to even respond?

How do you explain that we have “operating room routines?”

What can you say to soothe the lonely pain of recovery. Again?

Nothing silences a conversation faster than a discussion about the uterine biopsy of your 12-year-old daughter.

Nothing silences her cell phone faster than trying to just share a little of that enormity.

Truth is, we know. We know we are loved. We know we are thought of, and virtually hugged, and prayed for. We know.

But, when so much of your life is swallowed up in medical procedures that you really can’t talk about – it gets lonely.

She’ll need another day on the couch. To recover fully. Her Dad will stay home tomorrow. They will watch some TV, and talk without speaking. They are good at it.

And Monday, she’ll head back to school, awkwardly searching for the fine line of politely ignoring the enormity of her life, and sharing just a little with those who are brave enough to ask.

Please don’t take any of this the wrong way. We appreciate the love, and texts, and Facebook messages, and Emails. We love all of you. And we are sure we’ve missed some key things in your lives too.

It’s just, well, the reality of this Cowden’s Syndrome, the enormity of the 5 surgeries in a bit over a year, the gut wrenching notion that it won’t quit – ever, the frustrating planning of two scans and a doctor’s appointment already eating up the next “vacation,” the waiting for the pathology report for the polyps that just don’t belong in the uterus of a 12-year-old, well, honestly… It’s just overwhelming.

I think that’s the word that describes my thoughts best. Overwhelmed.

Now that I’ve got that organized, I’ll get back to the business of

BEATINGCOWDENS!

The Patient or The Person?

Published on December 13, 2015 by beatingcowdensLeave a comment

I am sure I am not the only one, especially the only parent, who struggles daily with wondering if I have made the best choices for my daughter.

Sometimes we argue, and bicker, and I find myself wondering if I am reaching her. Other times I look at all her activities and wonder if she is too busy. Still other times, I look at her and I see those tired eyes, and I wonder what I can do to make things better.

Choices. Life is about choices. And around 12 years old is that transitional time where more and more of the choices become hers, not mine. I can guide, and support, but she is beginning to make more of her own choices, and handle their consequences, be they positive, or not.

She is doing a great job, and truly despite a few hiccups, I could not be more proud. But I will always worry.

The one area though, where the decisions are mine and her father’s to make, are the complex medical decisions. And with Meghan there are many. I have to wrestle with my roles, advocating for her best interests physically, mentally, and emotionally.

This has been a growing process for me, and there has been such a learning curve. With Meghan there is always a medical decision, always a worry, always something that has to be checked out and looked at. Many of these things have potentially serious consequences. But, she is not a medical specimen, with a fascinating genetic disorder. She is a child, a young lady, with hopes, dreams, goals, and emotions. Finding the balance between who she is and what she needs is tenuous.

Sometimes I get it wrong.

This time, I got it right.

The doctors are worried. She needs a biopsy. But, it’s not her first biopsy, and it won’t be her last. There is reason for concern, and we take that concern very seriously. The biopsy was to take place on the 9th of December, the first available. It would keep her from swimming for about 10 days.

She looked at me. I knew in my gut what to do.

No, you’ll have to book her for the 16th. (Even knowing the extra week of waiting would be agonizing for me.)

The doctor looked puzzled. But…

Listen, she has her drama concert on the 10th, and her swim meet on the 12th and 13th. She’s primed and ready to qualify for a championship meet. One week is not going to change that biopsy. You and I both know, it is already whatever it is.

She looked at me. She looked at Meghan.

My eyes locked with my girl. In those eyes she thanked me for putting her the person, before her the patient.

Thursday there was this…

Saturday, there was this…

And before the meet was over she had personal best times in 4 out of 5 events, and 2 qualifying times for Silver Championships.

We have no idea what Wednesday and the ensuing week waiting for pathology will bring.

But, there is a peace in knowing the person is always more important than the patient.

A Lesson in Brave

Published on November 15, 2015 by beatingcowdensLeave a comment

To My Girl,

This week we wait. Again. We wait to see how nasty Cowden’s wants to play, and in what ways you’ll need to show it who is the boss. Again.

You have every right to be frustrated. To be mad. To be fearful. You could be negative, and self-absorbed.

But instead you’ve chosen to be brave.

And I have no words to express how proud you continue to make me every day.

You are strong. You are brave. You are focused. You are successful.

I have learned so much from you, and I continue to learn.

Whatever this week brings, we will handle it. Together. Cause there is NOTHING in this world capable of stopping you.

Just remember if you need a hug, a shoulder, or an ear – I’ve got all three.

Love you my girl,

Mom

The Story of the Girl and Her Mom

Published on October 18, 2015 by beatingcowdens5 Comments

So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.” Soon after they diagnosed her, they diagnosed her mom too.

And the mom and the girl read everything they could find, which really wasn’t very much.

And they asked a lot of questions. Some from the doctors, but mostly from people on the internet who had this Rare Disease too.

They learned a lot. They also learned there was a lot to learn.

They learned about cancer risks, and how very high they are.

They learned about screening tests.

They met lots of new doctors. Some were super awesome, and others were super awful.

They fired the awful ones, and kept the awesome ones.

The doctors sent them for tests, and screenings, and blood draws, and all sorts of poking and prodding.

At the beginning it was pretty much all they had time for.

The girl had lots of surgeries, and lost her thyroid, and then they called her a “previvor” because they said she got it out just in time before it was cancer.

The mom, she had a bunch of surgeries too. In one they found cancer. But she was called a “survivor” because it was all gone. (Thanks to the girl who got diagnosed first and saved her life.)

The girl and her mom ran from doctor to doctor. They sat in traffic for forever. They stayed in hospitals and had surgeries, and tests. Everyone treated them kind of strange. Like they were aliens or something. Their condition was so rare that hardly any doctors even understood what they were supposed to do.

Over time the girl and her mom got a better idea of what really mattered and what didn’t. They started to be more assertive about doctors, and schedules and planning. They started to say, “not right now,” sometimes, knowing that a few weeks wouldn’t matter, but a few months might.

The girl and her mom talked a lot about Cowden’s Syndrome. They talked a lot about Rare Diseases. Sometimes they were really angry. Sometimes they were sad, and other times they were grateful. They saw what some other people with Rare Diseases went through.

The girl and her mom had LOTS of long talks, real talks about tumors, and tests, and cancer, and life.

They worked on some things separately and some things together. But they agreed to get busy living.

That didn’t mean they could ignore the seemingly endless doctors appointments. They all had to be done. It meant they could schedule smarter. It meant they would talk about what symptoms had to be addressed right now and which ones could wait. It meant they had to get really good at communicating.

This isn’t always so easy since the girl is almost a teenager, but they are getting pretty good at it.

The girl had 4 surgeries this year, some more major than others, but she spent lots of time recovering. And she learned that she liked to be busy. She likes to sleep too, but she likes to be busy. With kids. Often. She also likes to be active. A lot.

The girl and her mom still have this Cowden’s Syndrome, and sometimes for reasons no one understands, they hurt a lot. Sometimes the pain makes it hard for one of them to push on. Sometimes the tired almost feels like they can’t go on.

But the girl and her mom, they push each other. They push each other to press on because laying down and giving up is not an option.

Their days are long. The mom works full-time. The girl goes to 7th grade and makes high honor roll.

Their afternoons are full of drama club, the girl’s love of theatre, and lots of swim practice. The days are often 13 hours or more of constant motion.

The girl and her mom, they decided that they might have a Rare Disease, but it definitely wasn’t going to “have” them.

So they decided that whatever comes their way, they are going to be active, healthy, strong, fueled with nutritious food, and built of muscle. This way if Cowden’s punches, they will punch back harder.

Sometimes the mom wonders if life would have been different without the girl. The mom wonders if alone she would have been able to push on.

But she doesn’t have to wonder. Because they have each other. And, because this weekend they spent 3 days at a swim meet. And the girl knocked major time off her events.

And, when they came home, the daddy, who is the glue that holds them together, had warm chicken, and rice and vegetables, the healthy fuel – all ready.

And the mom and the girl were so grateful. For each other. For the desire to fight. For the strength from good food, and faith, and the love of a dad who backs them up every step of the way.

And as the mom drove the girl to youth group at their church, they talked, about the swimming. And about the fundraiser they are planning. So that Rare Diseases scarier than theirs get some attention. “For the Babies,” and so that there can be research for this Cowden’s Syndrome. So that maybe it can get stopped in its tracks.

And as the mom walked home enjoying the fresh crisp air of Fall she was filled with gratitude.

For this story of BEATINGCOWDENS has only just begun. And each chapter holds more promise than the next…