N.O.S.E. an Acronym that Makes Sense!

Published on June 9, 2016June 9, 2016 by beatingcowdens2 Comments

So many things in life make no sense at all. I don’t need to fill in those blanks for you. No doubt you have a bunch of your own things in mind.

The illogical is part of our existence here. What we do with it is what defines us.

Meghan’s right foot stopped growing a few years ago. I didn’t notice for a little while. She was already wearing a size 9 in the 5th grade.

She had had 5 surgeries to embolize an AVM (arteriovenous malformation) in her right knee. At some point they theorize that by slowing the blood flow to the AVM, the blood flow to her lower leg and foot also slowed, stunting its growth.

Now, on the surface that may not sound like a big deal, and I guess for a while it wasn’t. Most people have feet that are slightly different sizes, many a half-size off. Most people are still able to fit them into one pair of shoes.

But the left foot kept growing. Right now it’s stalled at a 10. We can’t be sure it it’s done.

The ramifications of this began to have far-reaching effects. The different foot size adjusted her entire stride. The smaller foot is weaker, and naturally over pronates. There began to be back and shoulder pain…

There was one more knee surgery last May – to clean out some residual blood and quarterize a few spots in the knee-joint. That proved to make the knee even a little weaker.

There came a point where each foot needed its own pair of shoes.

Keeping her in a pair too big would compromise the weaker AVM leg. Putting her in a pair that was too small was just impractical. So we began to buy shoes in a 9 AND a 10.

Now we consider ourselves fortunate to be able to buy two pairs of shoes at a clip. We have only one child, and I find good shoes to be a wise financial investment. Buying the two pairs is never what bothered me.

My trouble came with what to do with the other shoe.

I threw some away, but that didn’t feel right.

People, not thinking it through, directed me to odd shoe websites. But, the odds of me finding a perfect match were slim to none. It didn’t make sense for us.

So, the shoes began to stack up in the basement.

Some internet searching brought me to National Odd Shoe Exchange (N.O.S.E,) And a million bells and whistles went off. Here was a real, 501c3 charity that accepts “in kind,” or actual SINGLE SHOE donations. They pair them with actual people. They work with amputees. They work with real people, registered in their database, and they send them shoes! History of NOSE

And, since they are a registered 501c3, our donation, as well as any postage, are fully tax- deductible. An added, unexpected bonus.

So, today I mailed a box to Arizona.

In it were three “pairs” of shoes. 10s for the right, 9s for the left, just the opposite of my girl.

And somebody, somewhere, or maybe even several “somebodies” will benefit from Meghan’s adversity.

It seems almost ironic that as I write tonight we are nursing a left shoulder that “froze” today, more than likely the result of the
“off sides” stride.

It locked up in the pool. During the last practice before the big meet this weekend. She has trained so hard. She fights every obstacle head on.

Feisty. Tenacious. And in pain.

Tomorrow there will be more ice. More stretching. More anti- inflammatories.

There is no pause for this young lady. Life keeps careening from one obstacle to another. Yet, she walks straight and tall and with her head high through it all. Counting her blessings. Growing up too fast.

So many things make no sense at all.

But for us, tonight, the knowledge that in a few days time 3 “pairs” of brand new shoes will be available to someone…

Well for us, that is a bittersweet way to find some sense in this big mess.

#BEATINGCOWDENS

#ONESTEPATATIME

In a Dark Room…

Published on May 30, 2016 by beatingcowdens1 Comment

I’m thankful that some nights she still invites me to chat with her in her dark room

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

Like yesterday when I told her that I am luckier because I have her to keep me going

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

Pain, surgery, worry, wonder, loneliness, anticipation, anxiety, and sometimes terror

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

“Hey, I follow you on Facebook…”

Published on April 29, 2016 by beatingcowdens1 Comment

There we were in the back of DSW looking for a pair (or two for accuracy sake) to fit the feet of my girl for “Aunt Em” in her school’s performance of “The Wizard of Oz” next week, and a woman approached us. She was happy, and friendly, and it seemed excited to see us. Meghan and I had never seen her before in our lives. But, she seemed to know an awful lot about us.

“Hey, I follow you on Facebook!. I am amazed by your story. And you guys stay so positive all the time. Such an inspiration!”

I’m not sure either of us knew quite what to do, so we smiled politely and said our thank yous.

Then we looked at each other.

Did someone just recognize us? Like we matter? A complete stranger? Wild.

There are times I write, or we write, and I feel it is simply a therapeutic output into cyberspace. Yet, we receive messages, some from all over the world, confirming our story is getting out there. We know all about digital footprints. But Wednesday, well we finally saw our own – face to face. In the shoe store.

Why do we tell our story? Why do we keep at it through the mundane and the heart-stopping? Meghan says, because the truth needs to be there. When someone looks, they need to find real people like us, getting by, every day.

I guess she’s right. She often is, although I don’t make a practice of TELLING her that…

Spring Break 2016

It sounds almost funny to say it. But, we are ALMOST used to it. See, there ARE no breaks. There just aren’t.

Doctors appointments take time. On average 4 hours roundtrip to Manhattan considering wait time and traffic. I have work. Meghan has school. We miss more than we should of each. Routine appointments are for days off. That’s how it has to be. But, then you add in a flu-like virus from who knows where, and you insert about 3 extra visits to the pediatrician, on top of a cardiologist, just to be safe, well by the time you get to the routine sono of the thyroid bed (where the gland was removed to check for regrowth,) and the dermatologist, and the endocrinologist, and the traffic, and the very fair school project… There is just about enough time to switch a closet or two, wash a few windows, and about HALF the curtains you intended to, while sneaking in one LONG trip to the grocery store.

We spent the early part of the break watching a few movies on Amazon Prime. This is a real treat for Meghan because I am ROTTEN at sitting still.

And somewhere in between “Ferris Beuller” and “Annie” we grabbed a few lessons.

From “It’s a Hard Knock Life…”

“Don’t if feel like the wind is always howling?
Don’t it seem like there’s never any light?
Once a day, don’t you wanna throw the towel in?
It’s easier than puttin’ up a fight..”

Sometimes when I come into the house I love, instead of feeling calm and relaxed, my heart starts to race. I think of the papers, and the phone calls, and the bills, and the scheduling, and the terror of missing something, and the compulsion to keep up with the basics, and I just want to sit on the floor and cry. Sometimes I even do. Sometimes I even get grumpy for a while. Then, usually when no one is watching I’ll grab a dog and rub a belly, or do something silly to try to shake off the enormity of it all.

I remind myself it’s about every little piece. It’s about one day at a time. It’s about counting the days with no headache instead of always the days with knee and hip pain. It’s about looking at the pile, neatening it up. Making a list, and leaving it there to go for a walk. Some days I get it better than others, but I’m a work in progress.

Yesterday, we did well with the pediatrician. He drew some more labs, but feels she’ll be well enough for full activity Monday. The dermatologist, routine Cowden’s Screen, was without incident too.

Today, the new endocrinologist (only our second visit) proved himself to be a wonderful addition to the team I am so desperately trying to form for Meghan. I DREAM of the day I get them all together, assign a captain and let THEM help me. But, for now, he is bright, inquisitive, and willing to toss out the “rules” when he treats Meghan. So the hormone that we had to ditch, the medicine that was out to save the uterus that now has to save itself, well that medicine can mess with T3 Uptake, one of the thyroid hormones. Meghan has a hard time converting T4 (Synthroid) into T3, so we actually supplement with T3. Most doctors have no idea. He said lets raise it and check her in 2 weeks. Works for me. Feeling like a validated human is priceless because this child is so exhausted all the time, it’s just not ok.

He scanned that thyroid sonogram report, reassured us about a renegade “reactive node,” and moved it to the “watch list.”

The next few weeks are set to be a whirlwind. I can only pray her body is up for the task. Lots of good, and happy things on the agenda.

It’s a busy life. I wanted to see some people this week. I wanted to reconnect with at least one friend. I know they are out there. And yet again, the week didn’t allow me any advance planning. Can’t expect people to wait around for me. So my music and my computer keep me company, with the laundry and the dishwasher, while Felix and Meghan celebrate at a Sweet 16. It’s good for them to get out together sometimes too.

#Beatingcowdens

requires focus, stamina, and its own brand of mental toughness.

We’ve got this.

DO SOMETHING!

Published on April 13, 2016April 13, 2016 by beatingcowdens1 Comment

The story of how a New York City girl got the ear of a West Virginia Congressman is a long windy one that involves the depth of love and dedication the United States Marines hold for their own. That loyalty and brotherhood extends through generations in ways that would be difficult to explain in words.

That, will be the story for another day.

For today, what you need to know is one of those Marines, who I hold very dear, heard me when I spoke. He listened when I told him how my father apologized upon learning Meghan and I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome.

Once Dad understood the PTEN mutation, he became very sure that he “brought this back from Vietnam.” Dad was certain that his exposure to Agent Orange in the jungles of Vietnam had changed his body. He was also sure that the toxin was responsible for what my genetecist deemed a germline (inherited) mutation in Meghan and I.

We know for sure that Meghan got her mutation from me. What we don’t know with certainty is where mine came from. My mother and younger (half) sister on my mother’s side tested negative for PTEN. My father was never tested. Before I could ask, he passed away from Pancreatic Cancer in December 2013. However, we do know my mutation was not “de novo,” or spontaneous. We know it was germline, “most likely passed through the sperm of your father,” my genetecist explained.

So, all we had to go on were Dad’s instincts, which I knew were in no way going to ever prove causative to the US Government.

But I reached out, and I acquired anecdotal evidence from my online support groups where 4 people other than myself indicated a first degree relative with a similar toxic exposure. In a disorder as rare as Cowden’s Syndrome (1 in 200,000) with group sizes in the low 100s in most cases, these were numbers worth noticing.

Sometimes a theory is all you need. And when you eliminate the need to “prove” and you focus on the need to “educate” and “raise awareness,” sometimes you can make progress.

Today, the story is about how Congressman David McKinley (West Virginia) and his staff listened when we spoke about Cowden’s Syndrome. And they did something.

I was put into contact with Lou Hrkman, the Executive Assistant to Congressman David B. McKinley, P.E. (WV-01). (412 Cannon Building Washington, DC 20515 (202) 225-4172) through that Marine I mentioned earlier. Alan doesn’t give up.

I shared an explanation with Mr. Hrkman, of Cowden’s Syndrome, and more specifically PTEN Mutations. I told him about the impact on our lives. I told him about my father’s instincts. I talked to him about how, with a syndrome like this, KNOWING SAVES LIVES. We spoke about veterans and toxic exposure. We spoke about the thought that exposure could alter genetics. We talked about RARE DISEASES, and more specifically, RARE GENETIC DISEASES. We spoke about how if the doctors at the VA were trained to look for these disorders, or to be more aware, or to educate veterans, or to look for these disorders in descendents of veterans, that it is likely LIVES WILL BE SAVED.

This week I was contacted by Mr. Hrkman, on behalf of Congressman McKinley, to draw my attention to the last paragraph on page 47 of the…

It says…

And there it was. In print. For the VA Hospital System to be held accountable for education.

It is not passed yet. The specifics of the bill need to be debated in Congress, but he is confident.

We who are so anxious to be heard, to be noticed, to be recognized, this is a huge first step. And while I realize many of you are not relatives of Veterans, I feel it is SO important that we take this opportunity to raise awareness NOW!

I asked Mr. Hrkman what people can do.

Here was his reply…

It sounds quaint, but writing or meeting with your congressman is the best thing you can do. Members take notice when their constituents are interested, especially on a personal basis versus a mass mailing or robo call thing. If you write your member, specifically reference the document I sent you (Military Construction, Veteran’s Affairs, and Related Agencies Appropriations Bill, 2017) and the page number. (Page 47) I would also contact Vietnam Veterans and other Vet groups, but Vietnam Vets are especially affected.

PLEASE, right now, my American Friends, contact your representative in Congress. Let’s make them HEAR US. ALL OF US. This could be the start…

PLEASE, share this post far and wide. Tag anyone who you think might help.

It’s time for us to DO SOMETHING…

“Do Something” by Matthew West

I woke up this morning
Saw a world full of trouble now
Thought, how’d we ever get so far down
How’s it ever gonna turn around
So I turned my eyes to Heaven
I thought, “God, why don’t You do something?”
Well, I just couldn’t bear the thought of
People living in poverty
Children sold into slavery
The thought disgusted me
So, I shook my fist at Heaven
Said, “God, why don’t You do something?”
He said, “I did, I created you”If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

I’m so tired of talking
About how we are God’s hands and feet
But it’s easier to say than to be
Live like angels of apathy who tell ourselves
It’s alright, “somebody else will do something”
Well, I don’t know about you
But I’m sick and tired of life with no desire
I don’t want a flame, I want a fire
I wanna be the one who stands up and says,
“I’m gonna do something”

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

We are the salt of the earth
We are a city on a hill (shine shine, shine shine)
But we’re never gonna change the world
By standing still
No we won’t stand still
No we won’t stand still
No we won’t stand still

This Matters

Published on April 7, 2016April 7, 2016 by beatingcowdensLeave a comment

A few weeks ago, as we were preparing for World Rare Disease Day, my principal allowed Meghan to speak to my school. She did an assembly for the entire school, first grades 3-5 and then grades K-2.

In both assemblies she showed her video, although we clipped the beginning from the little guys.

In both assemblies she spoke about Cowden’s Syndrome, following her mission to raise awareness.

Our Student Council actively worked to collect denim as part of a fundraiser for the mission. They were amazing.

One little girl, our first grade friend Emma shared her journal with Meghan.

Then she shared the journal with the whole school. We are so proud of Emma and thankful for her bravery. It felt really good to know the mission of awareness was working, coupled with intelligent compassion as young as first grade!

We had the fundraiser on the 21st of February. The $13,000 has been dispersed, but the lessons remain.

Children in my hallways ask about “Meghan” as if she is one of them. They want to know how she is, and what she’s up to. A few even ask when she is coming back. These are the young, bright eyed reasons I love my job.

Plus one more

About 2 weeks ago a young lady sought me out to give this to me. This was a labor for her, truly a labor of love. Writing is not easy, but clearly compassion is a natural emotion for her.

We are getting somewhere. Meghan wants the world to know. With promising children like this on her side, she’s developing the advocates young.

With much love and gratitude, we remain

#beatingcowdens

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!

Inspiration

Published on February 17, 2016 by beatingcowdens1 Comment

Mother. Father. Daughter. Son. Spouse. Sister. Brother. Grandparent. Aunt. Uncle. Niece. Nephew. Friend.

If we are lucky, we connect the word “Inspiration” with one or more of them in our lives.

It’s been a really long month. And on the surface we have been preparing for the Second Annual “Jeans for Rare Genes” Fundraiser at the Hilton this Sunday, February 21st. ( TICKETS FOR THE FUNDRAISER – HERE )

My husband has been wrapping baskets. My daughter has been soliciting donations, and publicizing the event. She was invited to speak at a Young Republicans Meeting, a Junior Giving Circle Meeting at IS75, and she was invited to speak to PS30 in Westerleigh. Tonight she is thrilled to be speaking at the Staten Island Giving Circle Meeting. Staten Island Giving Circle

I have been trying to stay on top of vendors, and seating, and tickets. But I have been distracted. We have all been distracted.

Those two, in the center, my grandparents, are at the center of this family. They are the inspiration. It is their ripple effect that allows all of us to do what we can to make the world better. They are married 70 years. She is 95. He is 96. And until just over a month ago he lovingly cared for her with the limited assistance of my mom and a 4 hour a day aide. He cooked, cleaned, shopped, did the laundry, paid the bills. And endured a great deal, out of love. Pure love.

My grandfather spent 4 years in service to our country during World War II. He married my Grandma a few weeks after returning in December of 1945. He became a member of the FDNY for 23 years. They raised two children. They acted as second parents for many years to my older sister and myself. We watched Pop, a man of faith, not talk the talk, but also ‘walk the walk.’

I learned the meaning of inspiration through his humble humility. I learned love by watching him kiss Grandma every time he left the house. I learned generosity by watching him give of himself, unceasing, to neighbors, friends, and especially family. He inspires my life, and daily inspires me to be a better person.

His health is failing. In one month the transformation is utterly disturbing. And yet, he managed the strength to mouth the words to “Jesus Loves Me” and the Lord’s Prayer on Sunday as my brother-in-law gave us communion. I’ve been distracted by one of my inspirations.

His stubbornness, one of his best, and most challenging qualities, is one I passed on to my daughter.

Most of you know her story well. For those who don’t I’ll give you the shortest version I can.

She was born in distress, spent 4 days as the biggest, fiestiest baby in the NICU before heading home. There was a year or more of colicky sleepless nights, which melded together with hospital visits, the first of many surgeries to come, developmental delays, early intervention, and so on. By the time she was three I had CPSE telling me she’d never sit in a normal PreK or a regular school. We read, and researched, and peeled away layers in ways that were sometimes conventional and sometimes alternative. We found a combination of strategies that left my girl in an honors program early in her academic career.

The surgeries kept coming. The doctors appointments were relentless. The Physical Therapist Dr. Jill who loved her so much, pushed me to genetic testing. There the diagnosis of PTEN mutation, or Cowden’s Syndrome changed things forever.

Now there was a name. Now there was a reason. But now there was so much more to be worried about. Now people scurried and scampered about and whispered and doctors “googled” while we were in the room. Now her diagnosis prompted MY diagnosis, as Cowden’s is inherited. And so much of my own medical history made sense.

Four years ago I was pushed to undergo a bilateral mastectomy. It was supposed to be prophylactic based on the insane breast cancer risks for Cowden’s Syndrome patients. And then on pathology there was the breast cancer diagnosis, and the realization that my daughter saved my life. Humbled.

The surgeries persist. And get more complicated as the years go on. Life gets more complicated when you are 12 and in Junior High. Kids don’t really get this life. And well, they shouldn’t. But it gets lonely.

Sometimes she gets angry. Mostly she tolerates the loneliness. Mostly she channels her energy. She dreams of cures. She knows cures take money. So she spearheads fundraisers. She talks even when no one listens. She is grateful for her Cowden’s in the midst of the rare diseases we have seen.

She gave up soccer, and running, and dance. She hurts after normal kid play. She gets frustrated. Then she swims. Not to be put off, she found the place she can compete. And she pushes herself to be better every day.

She does well in school. Although it’s not always politically correct to talk about it. I’m her Mom, so I can say it.

She gets up every day. She smiles. She reaches. She inspires. Me, and countless others. I am one of the lucky ones who has been inspired by many – right in my own family.

So, a few weeks ago when the local paper asked for an inspirational Staten Islander, she was my natural choice. And I wrote, honestly, and without a second thought.

When the paper came out asking for us to vote I read every bio. And I was inspired. By all of them. Then Meghan read them. She was so touched I had written about her, she told me she’s be proud to lose to any of them.

There was a Facebook post this morning by the daughter of another nominee. Her Dad sounds like a stellar man. He offered to do anything for Meghan. He is kind and generous of heart. The daughter is lucky, as I am lucky. We have inspiration right in our own families.

Maybe we can all meet at the fundraiser Sunday!

TICKETS FOR SUNDAY 2/21 HERE!

You can read all about all of them and vote below.

Somehow, I think they’ve all won.

READ AND VOTE FOR INSPIRATIONAL STATEN ISLANDER!

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.

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…