Choose Positive….

Published on December 26, 2016 by beatingcowdensLeave a comment

The day after Christmas in our house is reserved for a blissful amount of peaceful rest. A few loads of laundry, a simple meal, late sleeping, playing with some new “toys,” recovery, and reflection fill the hours. It is a wonderful, necessary day to pause and recharge.

I am awestruck by how fast days blend into weeks, and months, and even years. My girl is now a young lady. A young lady of 13 years old with the fall devoted to High School Applications, academic honors, hours of swimming, and some drama (class) thrown in for good measure. It was a crazy season, but a remarkable, beautiful time of transformation.

I don’t get time to write as much as I used to. But, truthfully, you don’t need to hear from me all that often to follow along. The writing remains my way to sort out life. I feel fortunate that so many of you come along for the ride.

So much of our journey #beatingcowdens is couched in perspective. We talk so much about the realities of everyone’s life. We talk about the things people endure that we can not fathom, and we talk about how hard it is to have some of the conversations necessary in the life of my 13-year-old. We talk. Often. And perhaps that is the first of many blessing I have.

My girl has become a young woman through a path that is different from most her age. Notice, I deliberately chose the word “different” as we are careful not to measure things in “better” or “worse.” The medical drama unfolded at a fast, furious pace, most concentrated in the years from 8 to 12. And we held fast through each one, but then, slowly, the dramas began to slow down.

At first we didn’t want to say anything. There is the fear of “jinxing” the situation. When medical drama is your “normal” you don’t really know how to live any other way. It sounds bizarre. You want so desperately to be rid of it, but the relief of losing it would be so intense, that to relax and then have it hit you again could be crushing. So you stay on your guard. All the time. But sometimes when you do that you can get a little… I don’t know, isolated, alone, rough?

There is a security connected to living in a state of medical drama. At least you know what to expect.

But, it’s not a place to hang out when you don’t need to.

Meghan’s last biopsy was in July. The follow-up is this week. My last surgery was in August. And, in a turn of events here, I have spent the last few months in vocal therapy sorting out ways to work around the tumor that desires to strip me of my ability to communicate. We’ve had some success, and last week even amidst a terrible head cold, my voice made it with me all the way to Friday.

And it was on that very Friday morning, as I drove Meghan to a 5:30 AM swim practice, with my head-splitting and my nose running, that I told her how lucky I felt. She may have checked me for fever, to see if I had totally lost it. But I explained – a year ago facing Christmas break without her having been knocked down at least once by something major was an impossible dream. This year, she had done more than ever before, and seems to be getting stronger. That morning I was grateful that I was able to get my butt out of bed, to take her to the place she loves, so she could work on the sport she loves.

This fall we have successfully removed 2 stomach medications that were previously necessary for survival. And, we are well on our way to eliminating a third. There is nutrition, exercise, and natural alternatives in their place. And it is working.

She came home a few weeks ago with a perfect attendance certificate for the month of October. I save everything. I think that may have been her first. These are the things that keep us in perspective.

We have a “doctor cycle” among us now. The knee needs to be checked again, MRI, and two knee doctors. There are clinical exams, GI follow-up and endocrinology. The afternoons these next 6 weeks will be swallowed up with trips to NYC. I’ll add in some appointments of my own, as I prepare for vocal cord surgery, tentatively set, but not yet confirmed. We’ll keep swimming, literally and figuratively. We’ll hold each other up, and we will do something a little different. We will, instead of fitting out lives into the doctors, we will fit the doctors into us.

Raising kids, one, two, three, four, or more- regardless of gender, or age combination each holds unique rewards and challenges. We have our moments, my girl and I, when we challenge each other to the best we can be. Sometimes its deep conversation. Sometimes it’s a little less pretty. But, we do it. We learn and we grow together.

I find myself often, missing relatives who are not here with us anymore. I miss conversations, deep and thoughtful. I miss shared laughs, and the pride they felt and showed. I understand, and comprehend their lives are changed, their eternal lives are more beautiful than I can imagine. But, I still miss them.

I sometimes shuffle around a bit in circles in my mind, feeling a little lonely, a little unsteady, and a little unsure of how to break the cycle.

And even at those loneliest points I take solace at the people in my life who are there. Their own lives keep us from day-to-day interface, but they are there, forming that net that will catch me, or us, if we were to fall. They weave a web through our lives that give us such confidence and gratitude, that I can only hope they feel the same way about us.

As we begin to get heavy into the preparations for Jeans for Rare Genes 3, it is a time to get focused. I am not a huge fan of New Year’s Resolutions. A wise friend recently reminded me a calendar is not necessary to begin change.

Choose positive. That is my simple focus. I will not be perfect at it. But, I will work tirelessly. I will be positive, hopefully not to the point of irritating, but when given the opportunity to face a new situation, I will work to find the positive.

Cowden’s Syndrome will toss us curve balls for the rest of our days. I’ve never been much of a baseball player, but I plan to practice my swing. And just in case- I’ll keep a helmet on as well.

May the culmination of 2016 lead us to gratitude for all the positives it brought, and gratitude for the negatives as well. May it leave us with the reminders of the blessings in our lives. Only in appreciation of al of it can we ever move forward. And really, forward is the only direction I choose to travel.

#beatingcowdens

#everysingleday

#perspective

Miles to Go…

Published on September 27, 2016September 27, 2016 by beatingcowdensLeave a comment

September is a marathon of sorts. Although all the training in the world can never quite prepare you for the twists and turns needed to navigate it through to completion.

September is establishing new routines, in my own classroom, and in our lives. September is learning new students, and new teachers.

Each year, it is about pushing our bodies farther than we have ever been able to. It is not just about surgical recoveries, or broken toes, it is about swim. So much swim. It’s about swim before sun-up, and afternoons too. It is about drama and singing and doctors in between. It’s about finding the inner strength to press on.

It’s about balancing it all. Work, school, after school, meetings, and the like. It’s about stopping to find the beauty, and the sunrise, and the simple pleasures along the way.

This life, this chronically ill life is lonely. I’m not going to lie, or even try to sugar coat it. It is lonely. But, we three in this house embrace and press on. Because, really, there is no alternative.

There is no fault, no anger, no resentment. Reality is that every moment is spent using all the “spoons” we have to get through. At this moment there are no extras. Family and friends who comprehend will still be there with open arms when there is a “spoon” or two to spare. The rest will have found their own way, and that is a loss we will have to take in stride.

Everyone has something. All lives are busy. All lives have joy, and angst. All we can do is take what is in front of us and do the best we can with what we have where we are.

The worry in my heart runs deep. There is reason for it, yet I battle it all the time. It can not, nor will it, define me, or our lives. Regardless, it lingers always, lurking in the shadows.

My girl continues to amaze and impress with wisdom beyond her years.

For her birthday Meghan had a very specific request this year. One of her gifts was, “The Unabridged Poetry of Robert Frost.” I was familiar only with one of his most famous poems. Meghan read this book fervently for most of August. I think I understand why now.

Lab work tomorrow to keep those thyroid hormones in check. We need our strength to remain

#beatingcowdens

On Your 13th Birthday…

Published on August 8, 2016 by beatingcowdens1 Comment

August 9, 2016

Dear Meghan,

As I sit to write this some time in the middle of the night, I am reminded of the early years, when so many of the middle of the night hours belonged to the two of us. Yes, Meg, I said YEARS.

You struggled my girl, but your determination was evident early, like the day the NICU nurse called you feisty. She was right. And it has proven to be one of your finest and most valuable attributes.

When I look back on pictures of those early years, it doesn’t seem all that bad. I guess I never had time or desire to photograph some of those tear-stained days. And maybe. if it wasn’t for the colicky cry seared into my brain, I might have even come to forget that you considered sleep optional, crying and screaming mandatory, and that carrier pouch a requirement for all things. At one point we had even taken to calling you a kangaroo baby…

But, I look at the babies in those pouches, And I think to those mother’s “enjoy it.” You might find this hard to believe my dear, but there is not a single minute I would change or do over. Every step along this journey with you has BEEN the journey. And I have the deepest gratitude that God selected me to be your mother.

The path hasn’t been easy. Sometimes it’s been rocky, and a little unsettled. Other times its been like traveling through fire. On a bicycle. With no handlebars. Backwards. But, I think we’ve all found pieces of ourselves we never knew existed, and there is a family bond between you, and me and Daddy that so many envy. Not for what we’ve done or where we’ve been, but rather the fact that we have done, and continue to do it all together.

At eight years old, you were tossed a diagnosis of a Rare Disorder, a 1 in 200,000 PTEN Mutation called Cowden’s Syndrome, that has leveled many grown adults. But, by eight years old, you were already seasoned at doctors, OT, PT, and speech. You’d been there, and were still doing dome of that. At 8 you were intimately aware of what it meant to spend hours waiting for doctors, and you had a clearer visual of an operating room than anyone should ever have. So really, in reality, that diagnosis just pushed us in the right direction to continue to help you become who you were meant to be.

It’s rotten to be the “unusual one” the one with all the risks and the need for that “hyper-vigilant” surveillance. But, I’m thankful.

See without Dr. Jill to push us to your diagnosis, without all those things falling into place, it’s likely I wouldn’t be here to write this. Your diagnosis led to mine, and while I am intimately connected with the reality there is no guarantee of tomorrow on this earth for any of us, my heart is sure that you, my angel, my gift, you my dear saved my life.

I watch you with each passing year, and the challenges pile on top of themselves. And we both sometimes want to stop the presses and scream, “IT’S NOT FAIR” and the top of our lungs. but then we laugh. “Fair” is just a silly word anyway. It’s not the perspective we use. It’s not worth our time.

You approach this birthday with 17 operating room trips under your belt, and too may ER visits and, tests, and hospitalizations to count. You have had to make decisions, and think thoughts that are beyond the scope of what you should contend with. But with grace and dignity you proceed, because none of that is what defines who you are.

Grace,. Poise. Strength under pressure. — Grace. Poise. Strength under pressure.

Despite unimaginable pain, you press on. Your body would not allow for dancing school or soccer. But the competitor in you was not to be silenced. Running was out of the question, so now you “fly,” in the water, 11 months a year 4-5 days a week for hours. You pull energy out of the crevices of your toes to push through when most would curl up and give up.

First season swimming, a few weeks in. Spring 2013

2016 Working on her "fly" — 2016 Working on your “fly”

You press on in the community, focused to raise the necessary founds the PTEN foundation will need to create our patient database. But, you will not turn your back on the charity where you began, Global Genes, “for the babies who can’t speak for themselves,” you tell me. You make flyers, select venues, advertise and collect raffles. You speak at schools and organizations across the Island who will have you, to raise awareness that rare diseases are everywhere. For the last 2 Februaries we have celebrated Rare Disease Day with almost 200 people, gathered because you have a mission.

Youngest “Woman of Distinction” recognized in Albany by Senator Lanza in May. Proudest parents.

I watch you talk to people and I swell with pride. When you’re intermittently stuck in that wheelchair you hate, you decided to help the doubters, the starers and those passing judgment. A simple business card with a phrase you helped create “Cowden’s Syndrome – Rare. Invisible. Real.” It starts a conversation, or it ends the behavior. Either way you manage with grace to rise above.

You take the high road so many times a day. I know it’s not easy. And I know there are people in your path every minute determined not to make it easy. But, truth be told, as we are learning, there are others out there. There are real people, at swimming, at youth group, at SICTA. There are real people who are finally recognizing that you are pretty spectacular. And I don’t mean that in a ‘who is better than who’ way. I mean it in it’s best sense. Everyone is spectacular in some way. You just learned it a little early.

As you turn 13 this week, I wish you so many things, from the depths of my heart and soul;

*Never lose the magic. Ever.

*Never compromise yourself for anyone. Remember that doesn’t mean to be brick wall stubborn. It means to keep those morals. Rise above.

*Always remember no matter how wild and crazy the world gets, you’ve got two parents who will love you regardless… and that is a PROMISE.

*Smile, sing, laugh, act, dance, be sarcastic, and sensitive, and guarded and silly, with a healthy touch of humor thrown in. Do it all always with respect.

*Continue to constantly take every obstacle tossed at you, and it toss it back, or walk past it and move on. When they tell you you can’t, find a way to show them you can.

*Never let anyone make you feel less than. You, you are enough. You are always enough. God said so, and He is smarter. Trust.

*”Be the change you wish to see in the word.” – Ghandi

Your teenage years will be a giant path of self-discovery. It won’t always be smooth. But nothing is.

Be you, and it will fall into place. And in the off chance that none of that works, I’m not going anywhere.

I love you from the bottom of my heart. You truly are the child I was meant to have, and there is NO ONE I’d rather be #beatingcowdens with, than YOU!

Happy 13th Birthday! You will always remain, “My Most Thankful Thing!”

I love you ALWAYS,

Mom

*Thanks for bringing out the best in me. I love you more than you know.*

Counting… Our 400th Post!

Published on July 21, 2016 by beatingcowdens1 Comment

“Count your many blessings, name them one by one…” Grandma used to sing years ago when we would complain about nonsense. She was a little tough sometimes my Grandma, and maybe that’s where I got it from. But, many times she was right, whether we listened or not. (Maybe that’s where I got that from too? ;-))

I like numbers. They are logical. They are what they are. In a world that often makes no sense at all, I find order in numbers.

Except sometimes I’m faced with the question of what to do when numbers become overwhelming in and of themselves.

This marks the 400th post on this blog. While it’s by no means a masterpiece, when I sometimes poke through old posts I remember so much of where we’ve been. It’s a definite roadmap of our journey, and Meghan and I take great pleasure when people from around the world reach out to us and cite the blog as a source of comfort and strength.

Cowden’s Syndrome is rare enough that it can be a lonely diagnosis. Being able to reach people the world over has been a victory for us, and them.

With over 170,000 hits on various posts I know we are getting the word out. Slowly.

I might have wanted to celebrate this post. I might have wanted to make it really special. But, I’m counting something else today.

Today was the 17th time I’ve gotten off the phone with the nurse, giving me pre-operative directions for my daughter. Today, I listened as I always do, reciting the directions in my mind before she spoke. Really my only interest was the time. The rest is routine. I want to stop counting. I want to just go with it. I can’t give you an exact count on mine anymore – because once you’re a mom, well, you just focus more on what’s important. And you become less important. And that is a gift, denied to many, cherished and appreciated.

Somehow though, if I stop counting for her, it makes her struggle feel less valid. The numbers give her strength. A badge of courage. Something concrete in this world of abstract.

My post last night was about “Patience”

https://beatingcowdens.com/2016/07/20/the-waiting-place-2/

And as I poked around the blog this morning I was taken back years, through so many similar posts.

https://beatingcowdens.com/2013/01/10/blessings-and-patience/

https://beatingcowdens.com/2012/07/02/the-waiting-place/

https://beatingcowdens.com/2015/05/06/hurry-up-and-waiting-rooms/

https://beatingcowdens.com/2015/08/28/losing-count/

Their similarities are uncanny. I guess the story doesn’t change much. Hurry up, wait, surgery, wait, recovery, wait, follow up, wait…

So I’ll leave this 400th post as unremarkable. Nothing has changed. Nothing will change. And that’s the precise reason we keep counting, and keep telling our story.

Tomorrow, surgery number 17. 9:15 arrival. As usual, prayers always appreciated.

#beatingcowdens 400th post!

“We’re All in this Together…”

Published on July 16, 2016July 16, 2016 by beatingcowdensLeave a comment

High School Musical – We’re All In This Together

“…Everyone is special in their own way
We make each other strong
We’re not the same
We’re different in a good way
Together’s where we belong

We’re all in this together
Once we know
That we are
We’re all-stars
And we see that
We’re all in this together
And it shows
When we stand
Hand in hand
Make our dreams come true…”

The news is filled with horror stories. Local and abroad, young and old. Lives lost through senseless acts. Cries for unity, and division sometimes drown each other out. From the grand scale, to stories closer to home, we seem collectively to be lacking the notion that, for lack of a better phrase, “We’re all in this together…”

As Rare Disease patients, one of the statistics that blew Meghan and I away early in the game, was the one that said 1 in 10 Americans suffers from a Rare Disease. If all of these people got together, they would make the world’s THIRD most populated country.

30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.
Source https://globalgenes.org/rare-diseases-facts-statistics/

We have wondered through the years what good could come of uniting forces for the benefit of all Rare Disease Patients. And slowly we are starting to see charities connect for the betterment of the big picture. The PTEN foundation has teamed with a patient with Duchenne Muscular Dystrophy, to raise funds to benefit both causes, and for those that remain undiagnosed.

Please consider supporting this cause. There is important work being done for all.

(FROM THE PTEN FOUNDATION FACEBOOK PAGE) Exciting News!!! We have a team of 12 sponsored cyclists that will support Ride4Gabe getting the word out about ‪#‎Duchenne‬ Muscular Dystrophy,‪#‎PTEN‬, and all Rare Genetic Illnesses with unmet medical needs. This is huge. You can help, please share this and our team go fund me link often. 1/2 of all proceeds will go to our PTEN Foundation.

HTTPS://www.gofundme.com/wesupportride4gabe

THEY GET IT! They understand, “We’re all in this together…”

I was never a huge fan on Disney’s High School Musical. I’m not really sure I ever sat down to watch, and I likely judged without thinking. But I’ll be the first to tell you first impressions can be flawed. And I’ll also tell you that I ‘get it’ on a much more grand scale after last night.

For us it started with a friendship that bloomed between Meghan and one of the most compassionate young ladies I have ever met. They’ve known each other forever, but only in recent times have they come to know each other as “friend.” They spent time on stage together through middle school productions, and it was through this young lady we learned of a Summer Theater opportunity offered.

Meghan's "Sisters" not by birth, but through love, heart and choice. — Meghan’s “Sisters” not by birth, but through love, heart and choice.

We are a self-sustaining program sponsored by the Staten Island Mental Health Society whose mission is to promote positive mental health through the arts. We are currently celebrating our 52nd Season of bringing live theater to children and families.

Looking for a summer change of pace, and not knowing at all what to expect, I dropped Meghan off to the Snug Harbor dance theater where these forty-five or so 9-18 year olds would spend the next 8 days generating a full “junior” production. I walked into the back of the room for the parent meeting at the end of the first day, and I watched the children, and young adults, attentive on the floor. This was July. There were a lot of them. Their respect had already been earned by the staff. This was a “no-nonsense” set up. We received out parent information and as we left to head home, my girl said very little about the day. She told me she liked it though, and this was a big win.

Some of the children in the program were new, like she was. Others had been in the program for years. And somehow it seemed to not matter. Ages, genders, styles, personal interests, there seemed to be very few alienating factors. Everything seemed to be joining them together.

Each day pick up was a little smoother. Names were a little more familiar. Identities seemed a bit more well-established. By the time we came home last Friday, it was hard to imagine they had only spent a bit more than 24 hours together.

10-4 for eight days they sang, they learned, they laughed and they grew. They focused and learned that they needed to keep …

“Just keep ya head in the game
Just keep ya head in the game

And don’t be afraid
To shoot the outside “J”
Just keep ya head in the game…”

They became a team. They became a group of high energy youth, who each possess their own strengths. Instead of trying to outshine each other, they learned they would shine best together.

Last night before we got into the theater I looked around. I saw photos from the dress rehearsal, parents and children I knew from other walks of life, and family and friends there to support my girl. I am an over-thinker. I always will be. It was hard not to think one week from then she’d be, God-willing, on my couch recovering from another biopsy. But, that was not about tonight. Tonight was about #beatingcowdens by being part of a group, by being one of “them,” and by being on that stage in a very present way. So I cleared my head, and I watched.

Sneaking in a Proud Mommy Moment 🙂

I watched a play about finding your own identity, supporting each other, not being linked into your “label,” following your passions, learning trust, and forgiveness and so much more.

I never was a fan of “High School Musical,” until last night. Last night I realized that there was such a timely, deeper meaning.

Truly, “We’re all in this together…” and in the words of Ben Franklin, “We must all hang together, or most assuredly we will all hang separately…” It’s time.

It’s time we stop seeing labels, and who we think people are. It’s time we start learning who they really are. It’s time to start celebrating the good. Because there is much good to be celebrated.

On an island knee-deep in a very real drug crisis, hitting every single walk of life, I am filled with gratitude for SICTA, for giving children something to focus on, and for instilling a positive message of self-worth and deeper meaning. I can not name all the adults who touched my girl’s life this week for fear of leaving someone out, but YOU, YOU are leading by example. I am full of gratitude.

Life #beatingcowdens is riddled with twists and turns. You gave us a brief respite.

And, as the lovely young lady took Meghan from the steps of the theater and invited her to the diner “with the cast,” so many things came together.

“We’re All in This Together,” indeed. THANK YOU #SICTA

“1,2,3…BRAVA!”

Punched in the Stomach…

Published on June 14, 2016 by beatingcowdensLeave a comment

…over and over and over again.

punched

Sometimes that’s the best way I can think to describe it. There are days, so many days, when it’s like a sucker punch that takes your breath away. It’s not going to knock you to the floor. You’re stronger than that. But, man, it knocks the wind out of you.

First, it’s the drive. The traffic. The hours spent headed to the appointment.

Then it’s the “hurry up and wait,” as you strive to be there for your 2PM appointment that COULD NOT be changed to later. Only to wait until after 3 in the waiting room.

hurry-up-and-wait

After that it’s the news. No matter what the appointment is, a Cowden’s Syndrome appointment rarely ends with overwhelming optimism. Well, because they are all so unsure. So they are afraid. And I get it. But, then they tell you the parts they DO know, and you sometimes just want to sit in the corner and bang your head.

THEN after all that GOOD fun, is the drive home.

Usually all in all about 5 hours roundtrip. Whether it’s Manhattan or Long Island it doesn’t really matter. It’s 5 hours at a clip that you’ll never see again. Plus hours and hours analyzing…

About the only GOOD thing that comes from all these is the time spent chatting in the car. Because my kid is pretty cool, and I enjoy her company. I just wish we had more time to be together, at the beach, or a concert, or somewhere fun…

mother-daughter-2

Today it was the orthopedist. He operated on Meghan’s knee in May of 2015. It was the 6th surgery on that knee, all ramifications of a pesky AVM (arteriovenous malformation) wedged somewhere under the meniscus. After the surgery there was PT, then a 6 month follow-up.

In November he released her from PT, and asked for another 6 months. In April he was so bothered by what he saw he brought us back in 2 months. He was troubled by her muscle spasms, and her generally being unwell. The conversation that day led us back to the hormone she was on after the December d&c, the one with the precancerous cellular changes. The medicine that was supposed to help keep the uterus in check. The medicine that seemed to come up an awful lot in April as the source of many problems. We labored over the decision and consulted almost every doctor, but ultimately decided to ditch the medicine and hope for the best.

Today the muscle spasms were gone. Evidence that they were caused by the hormone.

But, there was another pile of information to digest.

Sometimes it’s so hard, because you ask questions, and you just don’t always get the answers you want.

What about that right leg, will it ever match the left in strength? Do you think the foot will catch up?

No, it’s not likely.

Impact activities, even walking over a half mile, cause knee pain. Will this ever resolve? Can she do anything to help it resolve?

No.

So, what do we do when we have to walk far distances?

A wheelchair.

And the conversation continued like that. He is actually quite well spoken, but today his words hurt.

He is a good doctor, a good surgeon too. But, he is honest. Necessary, And painful.

We got some suggestions for strengthening. And a script for a refresher with our favorite PT. Progress will happen. It will just be slower. It will take longer, and harder work than any of her peers.

We don’t use the word fair anymore. It’s all relative. Nothing is really “fair.” But, some days it’s harder to find the bright side than others.

Some days, even when the doctor tells you it’s not right that someone your age should have so many limitations, it doesn’t make it any easier to hear.

Because the reality is what it is. There is both gratitude and pain in the mobility she has. Her drive, her focus, extends beyond limitations. She wants to be free.

Yet, somehow even on the toughest days, I have solace that there is a plan. And it will continue to unfold for both of us.

Tonight we recover from a few sucker punches with chocolate cookies and coconut milk ice cream. Tonight is not for the bright side.

Tomorrow will be different. Tomorrow is school. Full of people who do not know, or who are virtually unaffected by the realities of Cowden’s Syndrome. And tomorrow is drama. And tomorrow is swimming. Tomorrow will be too busy not to press on.

Tomorrow will be for working on ways to keep moving forward.

Tonight will be for resting.

Tomorrow is for

#Beatingcowdens

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

“…plans to give you HOPE and a future.”

Published on April 24, 2016 by beatingcowdensLeave a comment

When you’re in the middle of it, it’s often hard to see it. You’re in the middle of it, trying to be careful, protective and nurturing. You’re in the middle of it, often wide awake hours longer than your body wants to comprehend. Sometimes you’re terrified. Sometimes you’re confident. Often you’re in prayer. This thing. It’s big. Too big. Like a giant web with unmanageable offshoots.

Somewhere in between trying to get back to school after a night in the ICU last Sunday, and this Saturday morning when she woke, not ready to swim, but with a raging 102.5 fever, I lived a few years.

The last few nights I’ve lived a few more.

Fortunately, I take pretty good care of my body, and when she’s well I make covering between 7 and 9 miles a day a priority. I make eating well a priority always. I invest in nutritional cleansing by choice. It’s a lifestyle. I focus on taking the stairs when I can. Laughing with the elementary school children as I hit the 4 flights in our building over and over is good for me, and them. Some people train for marathons. I train for life. It’s a bit of a marathon itself.

It’s quiet here. Nothing stops a conversation faster than telling in honest frank terms the newest challenges Cowden’s has thrust in our faces. Last week there was the trouble breathing and the debacle of no answers at the ICU.

Tuesday the orthopedist recognized uncharacteristic tightness in al her muscles. Her hips and legs were in full spasms. He was confused. Updating him on what was new since our last visit included the D&C amd precancerous cells in the uterus. It included letting him know she is now on 10mg a day of progesterone. To say he was unsettled be an understatement. He let us in on his fears that the hormones were causing muscular issues, and that he feared her vascular malformation could indicate a tendency towards blood clots which this hormone level left the door wide open for.

Sigh. Growl. He left no bones about where he stood. He withstood our questioning about risks and benefits. He disagreed with the hormones. End of story. I asked if we were to return in 6 months. I was told 2 months. He’s concerned.

And as the week went on she continued to just feel worse. For the second week in a row, only one swim practice. An indicator of the severity of things. By Thursday I reached out to the Adolescent Gyn. She called while we were in the pediatricians office stating how poorly Meg felt. All the suspicious virus tests came through negative. CBC was normal. Our Pediatrician spoke to the Gyn. With reservation on her part, and too much “soft evidence” cited by him. the decision was made to pull the hormone.

This is NOT a decision to be taken lightly, for so many reasons. The least of which, yet still significant, is the generalized body discomfort that came with the months prior to the D&C, and prior to the hormones. It was torture for her. Then, there was the clear declaration, (because everyone likes to speak to the very smart 12-year-old,) that this hormone treatment, this move to arrest cellular growth in the uterus was the BEST way to help ward of cancerous tissue trying to form. In other words this hormone causing chaos in her body was her best shot at avoiding uterine cancer.

So to be in my head was not a good place. To be in the head of my girl… No words.

She woke up Saturday morning very unwell. I don’t recall the last fever. This one was 102.3 at 9AM. Back to the pediatrician we went. Tamiflu and 2 antibiotics. Hit whatever it is hard, real hard, and keep her out of the hospital. That was the plan.

So far it seems we’re on the right track. The fever is waning. The breathing is sometimes tricky. The phlegm is thick. She’s tough. She’d hydrated. She’s resting. She’s doing her part.

There are decisions that have to be made while #beatingcowdens that no one should have to make. There are guesses and speculations we have to play into, with no guide and no proven statistics. We have to focus on today. We have to make decisions based on today, and quality of life issues right now. But even these are insanely complex.

We have a strong girl. We are thankful. We have a God who has a plan. We are thankful for that as well.

There are times, as humans, we want to know more. We want a guarantee. We want insight into the plan. It is a sign of our weakness. We are working on it. Our God will continue to guide us, strengthen us, and move us forward. Be need to breathe in peace and faith.

Some days this is not an easy task.

To our friends, please know we don’t hide. We don’t avoid RSVPs to be difficult. We don’t back out at the last moment because we want to. We miss you. We are anxious for easy, comfortable gatherings. Life just seems to toss things in the way – often enough it gets difficult to dodge.

It’s ok if you don’t have words when we throw heavy stuff on you. It’s ok. Sometimes just to listen is all we could ever ask for. Please listen.

We have not lost touch with your lives. We understand we are not alone in challenges. Do not feel you have to protect us by not sharing. You trusting us, makes us feel valuable. It makes us feel we matter to you.

See just because #beatingcowdens has overtaken our lives doesn’t mean we’ve lost touch with reality. We want to see your baby photos, and hear about first steps, and awards, and sporting events. Call. text, Email, write. Know we haven’t left you for a better deal. We, like you, are just keeping our heads above water.

We remain always, #beatingcowdens

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.