It’s following me….

Published on September 27, 2014 by beatingcowdens4 Comments

Much like the Cowden’s Syndrome that will never go away, that will follow us for all our days, the pile stalks me. I swear it mocks me. Sometimes when I am not looking, and other times right in front of me.

In the pile are, well all the things you’d expect in a pile; bills that need paying, junk mail that needs sorting, statements that need shredding, or filing, problems that need phone calls, etc. etc.

The pile used to be in the basement. But it was dingy down there so my husband bought me a laptop and the pile followed me upstairs.

Since it had no proper home on this floor, it could often be found on the dining room table, or on the counter, or any number of other places.

My office has been finished. A bonus to me after Meghan’s big move upstairs. I have a big girl desk, and places to put all the things I need to manage our house, our doctors appointments, bills, authorizations, and complaints, and my quest to help others find the path we’ve begun walking towards better health and financial freedom.

Slowly I am beginning to decorate. The curtains and blinds have arrived. The printers are hooked up. The electrician I love neatly hid the wires.

The photo albums from years and years of my continued obsession with printing photos even in this digital age, line the wall.

The closet stores years of teaching materials, too outdated to have in my classroom, but current enough that I need to keep them – just in case.

Leaning on the wall to my right is a photo I took from my Dad’s apartment, just sitting there waiting for me to decide what to do with it, and as I type I sit in his chair.

And, just to my left, as I work diligently to ignore it, sits the pile. It found its way right into the new blue room with the gray curtains and white furniture.

I don’t like piles.

Partly because they are messy and out-of-order, and as I have said before, far too much of life is messy and out-of-order for me to have piles on top of it all.

Partly, they worry me, as there has been known to be a bill sitting in one of those piles, or a newspaper with a message that needed reading, or this week’s surprise, notification of a car recall.

Despite how many hours I spend working on making it go away, I am at points close to losing hope.

There are times I feel pulled, and stretched in so many directions, that I am quite sure NONE of them is getting the best me. Especially if they’ve sent notification of anything via mail – because it may just end up on the pile… and then – who knows?

If you’ve been reading for any stretch of time, hopefully by now you know I am not hopelessly out of touch with reality.

I get that there are many demands on all of our lives that sometimes stand in the way of a neat and orderly home. I really do get it. And I am trying to find a place where I can live happily somewhere in between.

I am a happily married Mom of one, who, for the purposes of all after school activities, and weekly medical appointments, is single. My husband works much farther from home than I do, and his day ends later. End of story. The afternoons are all mine. And they work out just fine. And unlike many couples, we share what we can, and he being a far better cook, prepares something for us to eat. Quickly. Before I head out to whatever has the night tied up. Whether it’s a doctor’s appointment, or spending some quality time with a relative who isn’t well, or attending a meeting, at my school, or hers – more often than not there seems to be something on the schedule every blessed minute.

Which leaves precious little time for friends, and phone calls, and random get-togethers, and fun. And well, it explains why the pile – although tame at times, never seems to go away.

Yesterday I listened to a 2 hour webinar for a grant I got for work. But I didn’t have work. Since it had to be after school anyway I scheduled it then to be sure I’d fit it in. Then I printed letters, and log-in cards for the computer program for the 32 kids across three classes that will be doing it. And while I am excited to see their progress, I was not excited to be doing that. Nope. Not one bit.

And there was the grocery shopping, and the dusting, and the generalized dog fur removal.

And the list and the questions started going like mad in my head,

The dermatologist – why can’t I get that woman on the phone for the appointment for the three of us?
I better confirm the date for our Rare Disease Day brunch in February before we lose it.
How can I figure out how to set up online payment for that? I really have to check.
Make the appointment about the car recall ( on a Saturday so I can sit for hours since we only have one car.)
And the car needs an oil change and inspection.
What about that car insurance lady who never called me back – got to get on her
And the pictures from vacation – almost 2 months ago…
The outside of the house needs a day all onto itself
And the dogs need baths, badly
What is the real reason Meghan’s foot X-ray looked like that?
Why is one of her feet over 1/2 inch off in size from the other?
What’s with the new knee pain?
When do we have to bring the swollen knee to the attention of the AVM surgeon who said, “as long as she’s not symptomatic?” Can she last swim season?
Can she handle this schedule? I mean without getting sick? Cause she’s close, and there’s a lot going on, but I don’t want to say no to all this good stuff….
And when, WHEN, WHEN….will I finally visit with some friends?
STOP………

My husband sat down with me on the other chair in the office. The panic was beginning to escalate.

Take a breath. You need a break.

A BREAK? HOW CAN I TAKE A BREAK? DO YOU KNOW THERE IS LAUNDRY, AND MEDICINE, AND DUSTING, AND BILL PAYING, AND…..HAVE YOU SEEN THIS PILE?????????????????????????????????????????????????????

Sometimes I find the notion of NOT getting things done maddening. But, if we are very fortunate, we have a spouse, or a soul mate who balances us perfectly.

He knows I need to step away. He knows I need to visit some long-lost friends. He also knows I need to spend lots of time with people who aren’t quite well. And, he knows I need to spend time with MY family.

So today, we went pumpkin and apple picking.

A nice farm, about 45 minutes from home. Just our speed. The pumpkins were kind of “placed” off their vines, but nice all the same. The apples were fantastic, and the walking was almost reasonable. For about 20 minutes.

The the pain started to show in the eyes of that beautiful girl who just wants so badly to do what everyone else is doing. Walking. Repetitive motion. Fractured foot, bone chip, or something way deeper? At that point all that mattered was saving the day. And there was Daddy. And his cape. As he bent over and swooped his almost 5 foot 4, 11-year-old onto his 6 foot shoulders. And they walked like that for an eternity. Picking apples. Chatting. Laughing.

And she got down long enough for us to take a few pictures.

Then, as we walked to the car the knee buckled and that was it. Back up on the shoulders again.

And even in pain as we got into the car after less than two hours, the proclamation that it was ,”FUN!” Took some of the tension out of my shoulders.

So we stashed our big girl in the cart in Ikea, even as she told us we were breaking the rules. And we looked at bedroom furniture for the grown ups, and headed back to drop some apples with the great grandparents.

I had a special place in mind for the 4th mum in a set I had bought at Costco, so after taking care of that, and another special visit, we even watched a TV show together.

And you know the best part of it?

The pile is still in exactly the same spot. While it didn’t magically disappear, it also didn’t live up to my fears of having it take over the room. I have to get in front of it to shift my focus to the things I enjoy, and I will get there…

Meghan had a nosebleed tonight. A wicked one from the days of old. And the knee never did bounce back. She’s in our room. Asleep with Felix. There will be a spot for me once I have cleared my head.

My heart, as a mom, and especially as the mom of a chronically ill child, will never be a place of peace. But with work, even with the obstacles, Cowden’s will constantly toss – we can be happy, productive citizens. This Syndrome does NOT own us. It takes one hell of a wicked set of stamina to stay in front of it, physically, mentally, emotionally, and in a practical sense too, but we’ve got this.

Thursday maybe the ENT will look down at that damaged esophagus and offer up some good news.

Until then, it is our hope that whatever your struggles, and we know you all have many in your hearts, minds, bodies, and spirits, that you are able to find comfort in those you love, and that even if only for a few hours, the “pile” seems a little less insurmountable.

Soft Lock Downs and other things that shouldn’t be…

Published on September 20, 2014September 20, 2014 by beatingcowdens2 Comments

I spent the weekend with my college roommate. She was the one I lived with the longest. She was the one who introduced herself to me the first day. She held me 2 months later as I was wracked in sobs at the loss of my cousin Meghan on my 18th birthday. She learned how to drive in my Toyota. We had fun, shared friends, and life, and got to know each other in deep ways saved for long term friends – or ones you’ve lived with. We gathered enough good dirt on each other to be sure we’d be friends forever.

The last time I saw her was in December. She and her husband showed up at the wake for my Dad.

The time before that was when I made it out to the wake for her Mom.

Somehow we find each other…

And this weekend we hugged first on Friday, in that room in New Jersey, miles away from each of our homes. We cried, and hugged and pulled it together. As the scene was replaying itself again. But this time it was far worse.

College Graduation - 1995 — College Graduation – 1995

It’s not right that we don’t see each other. And it’s no one’s “fault.” And I have a few dear friends I am in the same situation with – whose kids I’d barely recognize if it weren’t for Facebook and Instagram.

We stood together for a while, just the two of us. Interrupted only by people trickling by. We spoke about his fight. His strength. His battle. I told her how much I respected all he did to fight. I told her I was so privileged to have shared a few email exchanges after he took to this blog.

But, from where we stood, in the out of the way corner that defined her comfort zone, we might have even forgotten why we were there.

Although the reality became apparent through the greetings, and the hugs, and the “I’m so sorry…” sincerely sent in her direction, over and over.

Her little brother had died. Her “little” brother was little in age, not in height or spirit. He had a presence about him 20 years ago when I greeted him in our dorm room. When he spent time with us. His charm, and sincerity, and personality resonated even then.

Her “little” brother was 36. Diagnosed with stage 4 pancreatic cancer months ago, he fought with every fiber of his soul, through every treatment and surgery presented. He fought for his family, for his wife of 10 years, and for his two handsome young sons. He fought out of zest and a love of life. He fought for his siblings and his Dad.

I remember when she and I spoke this summer. I remember the conversation because she asked me a question I didn’t want to answer, but one I had needed to ask myself months earlier. She asked how long it had been for my Dad, from the time he was diagnosed until the end. And as I choked over 10 weeks, I instinctively tried to fill that statement with stupid things… “he’s young, there are things he can do…” But, she had heard a number. Just as I had when I had asked the question months earlier.

And I kept an eye on the calendar as I checked in on my friend. And every day I thought of her. I prayed often for her brother, and the family.

Sunday came the text that he wouldn’t make the week.

Tuesday came the one that said he was no longer suffering.

Friday rolled into today, and we sat. Side by side in a standing room only funeral parlor. We hung onto each other’s hands and friends and family alike shared stories, and memories of a guy who seemed to have been larger than life. And my favorite story of the day came when they said he went back to college after he had his boys. And he got his Master’s Degree too. Not for financial gain, but because, “How can I hold my boys to a higher standard than I hold myself to?” Class. His spirit filled the room. There was an abundance of support, and love.

And then we were at this backyard party at her brother’s house. And to the naked eye it could have seemed like any end of summer gathering. But it wasn’t. People were eating, and sharing stories, and passing time together. And two handsome blond boys ran about with their friends.

And then there will be tomorrow. And this young woman, now a widow, will need to press on for her boys. And those boys will slowly come to the realization that Daddy is never coming home. And his sisters to the reality that he won’t be at the next gathering, and his Dad to the realization that his son and his wife have now gone on before him – leaving him with lots to take care of.

36 years old. Father of 2. Dead from Pancreatic Cancer. Illogical. Incomprehensible. Insidious, painful, horror show of a disease. It just doesn’t make sense.

At all.

And there have been so many things that don’t make sense. Ever. They pale in comparison to the horror of a son and a brother, and a father dying out of order, yet still they are the things that keep me wondering about all things.

I think it was Wednesday at work.

I had a first grade class. And the loudspeaker went something like this, “This is a soft lock down drill. Please take all proper steps.”

And just like that 28 first grade students instinctively went to the back corner of my room. The stayed low and quiet as I shut the lights and the smart board and locked the door. They got themselves out of sight of the glass window on my door. And they sat. Silently. And I was stunned. I think it was the 10th day of school. They range from 5 to 6 years in age. And they never moved. They looked to me for a reassuring face. I faked it.

Truth is as necessary as I know they are – I HATE those things. And in this post 9/11 world, littered with countless nonsensical school shootings, and deaths, I get it. And I take it seriously. And the reality that one day we COULD be a target of chaos doesn’t escape me. But that doesn’t mean I have to LIKE it. I don’t like that we need to scare the crap out of these little ones just in case. They are growing up in a wild world.

So wild that when Meghan’s Social Studies homework became to be aware of the news every day, (something we actively have tried to hide her from because there is just enough CRAP in her life) one of the first stories to come across was terror threats in Times Square. She gets things very quickly. And she is stellar at context clues. Dad’s in Times Square every day.

These kids are growing up in a tough world. Grown up worries. Grown up realities. Young minds. It’s so hard to make any sense of it at all.

And so when the ones who are supposed to help -just don’t, well that seems to make things worse.

In the middle of the renovations that swallowed the end of August, Meghan broke her foot. A stress fracture to one of the superficial top bones. I am absolutely not getting “Mother of the Year”” for this, because I was in full on “suck it up we have things to do” mode for the first 36 hours after she banged the foot hard into a misplaced shelf in the basement. That was a Thursday night. And by Saturday of Labor Day weekend, we found ourselves in Urgent Care with a “suspicion of fracture.” Of course being a holiday that simply meant ice, rest and elevate till Tuesday when we could get to the podiatrist.

And we brought the X-ray, and the report. And everyone was very pleasant and we were told that the X-ray abnormality didn’t exactly line up with the point of severe pain. So, clinically it was appropriate to diagnose a stress fracture, put her in a boot, and have her repeat the X-ray in 2 weeks.

So she began middle school days after getting her braces off, with this giant black boot on her leg. And she plugged along for two weeks, and we got the X-ray repeated as we were told to. So, when we returned to the office for the recheck we gave them the disk and the report.

There was some grumbling about the radiology place we went to writing the “worst” reports (but no one told us where to go,) and some discussion in the other room about things on the film that were “probably nothing.” (Doctors should learn some moms have rabbit ears.)

So he came into the room after having had Meghan take off the boot. There was a surgical resident in tow.

“How does the foot feel?”

Meghan, “Much better.”

“Great, there’s no evidence of fracture on the x-ray. You must have healed. Let’s transition you off the boot.”

Please know during this whole exchange he NEVER EXAMINED HER FOOT!

Me, having already read the X-ray report, ” What about the report talking about “bony bridging and bordering sclerosis.?” Does that mean anything?”

“Well, it’s not causing her pain is it?”

Me,”Well she doesn’t have foot pain, per se, but, there is chronic joint/muscle/bone pain that we work on. Could things being out of order in the foot trigger some of this?”

Me,”I guess really what I’m asking is, is anything on that X-Ray consistent with Cowden’s Syndrome?”

“Well does Cowden’s Syndrome cause bony overgrowth?”

Me, “You’re the doctor, I am asking you.”

“But you are far more familiar with the syndrome than I am.”

Me, in my own brain, Thanks to Google University, and then out loud, “Are you seeing this? (pointing to the extra bone that juts out of her left (and right) feet) on the X-ray?”

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=201 ( You may have to cut and paste the link)

(THAT IS A PAGE FROM A WEBSITE, reviewed by a doctor at the cutting edge of PTEN research. It took me less than 10 seconds to find. It verifies bone cysts connected to Cowden’s Syndrome, and had anyone asked I would have been able to tell them about the “non-ossifying fibroma” in the left femur that scared the crap out of us when she was 2.)

“I don’t think so, but you should probably have a specialist look at that. I don’t need to see her again.”

GOOOOOOOOOOD THIIIIING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And I turn to see the tiniest tear in the corner of Meghan’s eye…. “Mom, he never even touched my foot. He has no idea what the problem really is. What’s the point of wearing the boot? I have to trust my own body cause they don’t know anything. I think its healed and the boot is hurting my knee.”

Fair enough.

She’s the closest I have to a doctor, and the thing that has made the most sense all week.

When you have a diagnosis that leaves you prepped for cancers of all types at all ages and in all places, there are things that rock you to your core.

Sometimes living with PTEN Hamartoma Tumor Syndrome is like living under the constant threat of a terrorist attack. But the terrorist is cancer.

You get to live in fear, or live your life.

You get to try and make sense of things, or run with them anyway.

With the motivation of those – not connected to us by Cowden’s, but connected to us by life – who have fought the good fight, I try to stay focused. To live life instead of hiding in a corner, or some days under the bed with the lights off…

So many things, so many tragedies will never make sense.

But it’s less about making sense, and more about being sensible. It’s about instinct. And love, and compassion. And cures. I am a big fan of cures.

Tonight, wherever you are in your life. Whatever is rattling your world, I ask you to stop for a minute.

Say a prayer for those two little boys who will begin to know that Daddy is never coming home.

Say a prayer for a family who lost a 36 year old high quality man too soon.

And please. In this world that makes no sense. Do something logical. And kind. For someone. Cause we ALL need it.

Random Acts of Kindness

Published on August 30, 2014 by beatingcowdensLeave a comment

With the recent ALS Ice Bucket Challenge, we have seen ingenuity lead to a spike in funds and awareness for a horrendous disease. Fundraising for the organization is at an all-time high. I hope, sincerely and with my whole heart, that this influx of funds is well-managed, that it gets into the hands of researchers, and that is yields major steps towards a cure for this heart-breaking syndrome.

All this awareness raising got to me this week. We donate what we can to our church, and various charities near to us, but this week I got reflective. I donated to ALS and three charities that were not ALS, and have nothing to do with PTEN. My donations will not impact the world in an earth-shattering way, yet it felt good.

I’m getting my gold porch light ready for September – Childhood Cancer Awareness month.

Other people suffer, and all of us – disease specifics not to be debated, could stand to have a cure around

But, regardless of your opinion, I think this ALS Ice Bucket thing did more than raise awareness for ALS. I think, it increased our awareness of humanity and other people’s struggles.

A few days ago in Costco I had over estimated my strength. And as I wondered how I would get the chair into the car, two gentlemen came from nowhere. Different places I might add, to work together to fit the chair into my car.

Then I received a card in the mail. It had a check enclosed for us the for a charity of our choice, or something fun. The handwritten note told me that Meghan and my story was impacting at least one life. The need to keep sharing was renewed.

And I connected on Facebook to a man who we met in Disney last year. He and his wife and Meghan struck up a conversation on a long bus ride. He had a service dog. She was enthralled. She was raising awareness of Cowden’s Syndrome. He tried several times to send me a link to a song that made him think of Meghan. He was finally able to get it through. I cried. My little girl is making a difference and this man took the time to let us know.

In the mail was a package from a friend, a former student, with a “big sister” type of compassion for my girl. There was a letter (which wasn’t for me to read,) and a key chain for Meghan, and one for me too.

None of these people could have known I was having a pretty tough time. I don’t so well in chaos, and the house was absolutely upended. In the year that everything broke, the bay window was being replaced, the house needed new… lots of things, and the leak in the pool was becoming evident.

Random acts of kindness.

That’s why they matter. So much.

We try to pay it forward as much as we can. So special to be on the receiving end as well.

Whatever the cause. Whatever the reason. An increased awareness of others will make the world a better place.

Do something nice for no reason. With no expectation of anything in return. Just because.

“A tranquil mind is not a little gift…”

Published on August 22, 2014 by beatingcowdens1 Comment

Growing up I didn’t spend a lot of time with my father. Despite some really fun day trips, I didn’t really know him well at all.

My Mom married an incredible guy when I was in high school, and there was this love and support that was there every day. We got to know each other quickly and well.

And that’s my tale of two fathers.

Ken has been a constant in my life since I was 15. He loves me like his own, and has treated my as such, without fail, and in all things. I adore him.

Dad struggled after Vietnam, after horrors that I can only imagine. He struggled to find his way, and to find the balance. He married twice, and had three kids, then he spent 10+ years in a long relationship. He lived all over. He worked to add his charm and personality to nightclubs all over NY. He knew how to live on top of the world, and at its bottom.

Several years ago life brought him back local, and for the first time that I could remember, he wasn’t working nights. We spent more time together. He came to dance recitals and swim meets for Meghan. He came to my house for gatherings, and just to be with us. We liked having him around. All of us. Even the dogs.

I got to have two “Dads.” While one is called Ken and one was called Dad, the terms are synonymous. Two very different people. Very lucky girl.

And I used this time to catch up with Dad. We would talk on the phone a lot, about anything. Sometimes he would talk. And when he did, I listened. When he really talked about old stories I sometimes even took notes. Because I didn’t want to forget anything. I don’t think he would have loved that idea. I suspect he would have thought it wasn’t worth my time. But, it was.

Lots of times I would talk. He was a really good listener. He knew when to interject and when to stay quiet. He knew when I needed to hear advice, and when I just needed a sympathetic ear. Sometimes I get overwhelmed. And I just need to offload, without judgment or solution. I called every Friday that I grocery shopped. Sometimes we talked for hours.

And the years saw a transformation as he was being treated finally for the PTSD that had tormented his every move since the war. He didn’t talk much about it, but every once in a while… it was my turn to listen carefully. And I did. Gratefully.

Then the conversations started to include talk of him being tired. Looking for energy. Millions of excuses listed, tried, tossed. Then there was the jaundice. And the blockage. And the pancreatic cancer. And within about 10 weeks my sister and brother and I said goodbye to our Marine. “The few, the proud…” to the very end.

Dad was a philosopher. Sometimes I was right with him. Other times we didn’t quite agree. But, it never mattered.

And in the weeks before his death I became his healthcare proxy – because I do healthcare all the time. And I got his medical records,and put them in a binder, and Dad laughed because he somehow knew I would – and so did my brother and sister, and my siblings and I took him to the fancier hospital. And we asked some questions. And we talked a lot. But, it was done. In the end it was just time for it to be the end.

But I was not, and am not ready to let go. Maybe that’s unhealthy. Or maybe that’s keeping the memory alive. Whatever.

It took weeks to clean out his small apartment. I touched every paper. I read, and sorted, and filed. I made more binders, and file folders. I shredded only with great care at my own dining room table. And as I sorted I found little scraps of paper. Little random thoughts. Notes. Scribbles of Dad’s. So I gathered them all together and I taped them onto large sheets and I saved them as a PDF for my brother and sister. And I laminated the originals for me. And sometimes on quiet nights, when my mind is busy and I can’t sleep, I peek through those notes. Almost like a chat with Dad.

Tonight I flipped open to the words, “A tranquil mind is not a little gift.”

And I paused. And I smiled. Dad’s mind was not always tranquil. But in the end it was even through physical torment. He had lived enough emotional torment to know “A tranquil mind is not a little gift.”

I am a worrier. Not a shock to those who know me even a little. But, also not unfair, all things considered.

This was a light week here for doctors. Only 2 appointments and one argument with a disrespectful office manager that led to a formal complaint. Oh, and one random really large pathology bill that was clearly not done right. The appointments were fine. One was annoying in the leaving at 7 for an 8:30 to be taken at 10:40 to get home around 2, but all things considered it was smooth. The other was with the gastro doctor who wants another visit to the ENT to peek down at the esophagus. (If only I could get a scheduler to do these things…) And the fight of course was with my doctor. The office staff of a vascular surgeon for a procedure I definitely need soon. I’m in the market for a new vascular surgeon.

But since we had some time, and we were looking for some light entertainment, we replaced the bay window in the front of the house.

So after a slightly tumultuous, but altogether fun trip to Disney, we returned very late Tuesday, slept most of Wednesday. Did lots of laundry, sent my husband to help out at my sister’s on Thursday, and Friday got ready for the new window.

Not that we WANTED a new window. We just bought the other one 14 years ago when we moved into the house. But about 2 years ago there was this little black spot that kept growing. And we called the company to look at it, but it turned out there was a class action lawsuit we had to participate in and I filled out miles of paper and it took almost a year to get someone to the house. By the time they came the little black spot was large and clearly water related. So the nice man took pictures and the conversation was about replacing the center of the window. Until they called the next day and said the black spot was in the wrong places, and the window would have to be replaced. But since the window was over 10 years old we’d get a percentage off the cost for the window and installation. Um, well that price was so wild we bought the window ourselves. And Ken and Felix and his friend John got it to our house, and finally Saturday all the planets aligned to put it in.

It was supposed to be a half day job. It was supposed to fit right in. And Felix, and Ken, and John, and Bobby, and Brendan worked their bottoms off. But, there was some cutting of walls, and by the time it was all back together on the outside it was well past 11 pm. That wasn’t the inside.

I like the house neat. Actually I need the house neat. And you can tell me whatever you want about how it doesn’t always happen like that, or I have to give it up. But I can’t and I won’t. Because it’s a control thing. I know it. I’ll own it. I can not control Cowden’s Syndrome, or any aspect of why Meghan feels cruddy so much of the time. I can not control random illnesses or natural disasters, or unscheduled hospitalizations and surgeries, or any other obstacle that is going to come into my way. But, through much experience I have found it markedly easier to handle every single crisis with a clean house. Something about having order in the home, gives me some sense of peace when the waters are very rocky.

So, at 11 on Saturday night I looked around and began to freak a bit. That’s when we decided to paint. It was time anyway, and the house was on its ear so to speak. So I prepped the room and there was paint. And the living room and dining room are back together, but the hall needs a coat too… and you get the idea.

Not to mention that a few weeks ago Meghan began the move from her room on our floor to the upstairs of our cape. There are two rooms with that peaked roof and lots of floor space. (There have to be some perks to being an only!) She has a bedroom, and a room with a desk, and all the things she loves. It has taken 4 weeks to clean out and move her, but we finished today. And as I sat in her room I cried a little. I remember distinctly being 9 months pregnant and crying in that room (see a pattern?) I was so scared. I was right to be scared. Some scary things have happened in the last 11 years. This time I know the move upstairs will be far less painful than the one she’s sure to make just a few short summers from now.

It was a good time to move. Junior High starts in just a few days really. A whole new school. A new chapter. Turning point. And as she decided what to keep, toss, and donate, her personality began to shine through. With just a few pictures left to hang, she has created an atmosphere that is representative of her. Now to keep it clean and clutter free… 🙂

But nothing is without event, and there is no time when I am fully at rest, as I frantically tossed my flip-flops off when I heard her cry out,” I NEED YOU!” I arrived at the top of the stairs to find her crouched over grabbing a leg that has been giving her trouble for days. One too many trips up the stairs, or on the floor sorting things? Who knows. Just like the headache that’s been around one day too many. Sinuses, allergies? God, I hope so.

At some point I’ll have to go to sleep tonight. And tomorrow will be for more appointment making, and dealing with random bills. The side of the house is littered with trash. There are 10 bags being donated Saturday morning. The clutter and dirt are disappearing simultaneously – with LOTS and LOTS and LOTS and LOTS of work. But my sanity is being restored.

And while this is far from how I would have chosen to spend this week – so close to the end of summer, Meghan got some time in with some friends so it was in fact a success.

So much flux. Moving Dads things in earlier in the year jostled the basement. Moving Meghan upstairs caused some purging. And slowly everything is coming together as it always seems to.

I think of how many times I would have called my Dad this week. The number is too high to count. I miss him every day.

He told me once to keep writing, to just keep letting it all out no matter what I thought of it. So I do. And I think about how he would have respected my need for order, while encouraging me not to sweat the small stuff.

Tonight I think calls for a glass of wine, and some reflection. Gratitude for an almost “normal” week with largely “normal” problems. Feeling grateful that my mind, while always a flutter, is somewhat tranquil, and…

“A tranquil mind is not a little gift…”

Thanks for the chat Dad. I miss you. A whole lot.

Life begins… at the edge of your comfort zone…

Published on August 15, 2014August 15, 2014 by beatingcowdens5 Comments

Roller Coasters

Nope, not us. No way. No how. Terrifying. Not going to happen.

Until last week.

Something clicked inside her head, and she decided that she had come to conquer.

There was a pit in my stomach when she first declared she was going to go on Space Mountain. Roller Coasters have never been my thing either.

But, she even decided who was going to sit in front of her and behind her. No getting out of it for me.

She told me that she had been through a lot in her life. And that she shouldn’t be scared of a ride. True. There was that quote by Eleanor Roosevelt we had read, and referred to so many times.

No not the other quote, “The only thing we have to fear is fear itself.” – FDR

This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt

The first time we were both a little scared. Then there was the second time. And by the third time she owned it.

“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago. Twice. I went too. And I really didn’t mind.

“Life begins at the edge of your comfort zone…” Words I am learning to be truer each day.

And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together. I did Star Tours too, but virtual reality isn’t really agreeing with me anymore. Maybe too much reality?

So she went on Mission Space with her Dad – twice. Once on the beginner level, then on the advanced. And they rode Splash Mountain too – just because.

It makes me happy to see her conquering fears. There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.

And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…

“Never settle for the path of least resistance… I hope you dance…”

“I Hope You Dance” – Lee Ann Womack

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.

“It is only with the heart that one can see rightly…”

Published on August 13, 2014 by beatingcowdens4 Comments

There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise.

We are blessed.

We have a beautiful, witty, articulate, charismatic and spunky young lady.

She knows pain, and she knows it well. And some days that pain is like plowing through a stone wall, while others its like walking across a pebbly yard barefoot. But, there is sparsely a day with no pain.

She knows competitiveness. Although she would like to be the fastest runner, she is starting to work towards a more reasonable goal in a no impact zone – the pool.

She knows intelligence that book smart children know, and she knows the perspective that few adults can master. She can look at other people and want to talk to them. She can wonder about them. She can empathize with them.

She knows what its like to be sick. And in surgery. With IVs, and needles, and scars, and recoveries. She knows what it’s like to never be “well” only watched.

She is learning, step by step, that “well” is more of a state of mind, than a state of being, when each week is peppered with some type of appointment.

Yet, she knows that even at the depths of her own Cowden’s Syndrome battles, there are others. With and without our syndrome – who fight a battle unbeknownst to us.

Meghan doesn’t use a wheelchair at home. For this I am grateful. Although as I teach my daughter about homelessness, and how we can never be too sure from where they came, or whether it could through a series of unfortunate events, become us. We practice a deep understanding of reality in Disney World.

Meghan’s pain, so much of it, stems from repetitive motion. Too much walking, any running, too many stairs, too much kicking or pulling in the pool… all of it has repercussions. So Disney, by it’s very nature, and its wide landscapes requires much walking. And, as we try every year, even with a little here and there – the pain is deep and inevitable.

So for that week every summer she gains an even greater perspective. She lives in a wheelchair. With all the inconveniences that come along with it, in an effort to save the needs from irreparable pain, and the trip from being a wipeout…she rides.

And on the first night after the vomiting I watched from a distance, as Felix helped her onto the handicapped ramp on the bus. And there was a knot in my stomach as I watched my girl get strapped into the bus in the wheelchair. This beast, this Cowden’s Syndrome we fight. Well we fight to win. But who can know?

I stop myself from wondering too far ahead and I reflect. On the old me. The me who used to look at people in wheelchairs riding buses as an inconvenience. A delay in my precious time. The me who used to judge and try to guess why they would need a wheelchair. The same me who used to judge a lot of things.

We will unpack.

The wheelchair will be stored. Hopefully for a very long time. But, it will be there, in the basement. In case. In case we need it for anything. Because the pain, well it’s always there.

Fortunately, she is in a position where her stubbornness still has the power.

And I will think, as I drive her back to swim practice in a few weeks, about the other mothers. About the ones who wish their child’s wheelchair use was temporary.

And I will think about the phone call I got this week. The one about the AVM growing in the knee again. Timed on the same day she was vomiting in the hotel room. And I will be grateful that we don’t need surgery right now. And I will be grateful that it is not in her head, or any other life threatening spot.

I am humbled.

By her grit. By her stamina. By her determination.

I am grateful.

For the opportunities afforded to my girl.

We will find the balance. We will pay it forward.

I don’t even really remember the judgmental me.

I am too busy working on

BEATINGCOWDENS!

Avocado and Isagenix – What’s in YOUR suitcase?

Published on August 12, 2014August 12, 2014 by beatingcowdens2 Comments

It’s been almost two weeks – a long time for me not to write. My head is spinning with things I need to get out in my blogging “therapy” sessions.

As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.

Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.

Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis. (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip. But we knew that would seem more like a punishment than a precaution. So the reservation held – August 5 -12.

In the week leading up to the trip time seemed to fly by. I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time. And as we were packing I began to gather food. See, when you travel with a kid with food allergies, you don’t travel without food – ever. Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.” There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars. In the past we also always packed tomato, and barbecue sauce too. Every morning we would fill small containers and have it to flavor anything dry along the way. Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.

So, we went to the next best thing – avocado.

I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated. She liked it to moisten food, and there were plenty of days she ate a whole one. So, into the suitcase went a container full of 8 avocados.

Use what you know.

And in another container nearby were several packages of Isagenix shakes. Those, I had packed with intention of using them myself. So glad I did.

When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30. We rode the Magic Express and got to the hotel by 10:30. At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.

And find the Magic we did.

We spent the day riding, and laughing, and watching and taking in all the wonder around us. We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection. Her stomach was happy. We were happy.

Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.” The “Fab Five” greeted us, and the chef took us to the buffet. I tried to choose carefully, as the selections seemed a bit questionable. I was assured they were within her dietary restrictions. And there was the drink. We asked for it diluted, as it wasn’t her normal fare. But he was busy and I suspect by the third glass the waiter had forgotten to dilute it. And there was the GFCFSF sausage… and…

By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat. She asked me for food, and even as I handed over the pretzels I should have known better.

She slept fitfully. So much so that I kept waking to check on her.

“New room… new place.” I kept telling myself…

And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.

“Houston… we have a problem.”

We exchanged those “uh-oh” glances – Felix and I. And we followed her to the room.

And barely did she make it in the door then the familiar violent vomiting from May returned. So much. So forceful. Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.

It went on for hours in our hotel room in Walt Disney World. And every time it seemed to calm and we tried water, bread, pretzels… it all began again.

We called our GI from home who instructed rest. And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure. After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.

And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time. There are good people.

But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.

He was amazing, and unusual, and smart, and introspective. And he sat with us for a good hour learning about Meghan. Then he sized up that she was not dehydrated.

“What do we do?”

“Go with what you know.”

Not so easy hundreds of miles from home. But, she was hungry. And there were avocados. And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.

Then he asked what she drank and we said “Coconut Milk.” And just like that he was out the door headed to a whole foods 6 miles away. HE took money only for the milk itself, not for his gas or his time. And we had options.

WHO does that? This stranger… this “standby doctor” so moved and so interested in helping…

So there was avocado, alternating with coconut milk at very deliberate intervals. And once the avocado held itself in place we had a few options.

“Can I have a shake?” MUSIC TO MY EARS…

A half shake in 8 ounces of coconut milk. Followed by a half of an Isagenix meal bar.

By 9 she was well enough for a ride around the hotel.

By the next morning we cautiously resumed our trip. With Isagenix, and an avocado in my backpack all day.

Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!

Suck it up, buttercup

Published on August 5, 2014 by beatingcowdensLeave a comment

I don’t often reblog. But I reread this a bunch of times and decided it’s well worth sharing. The Pink Underbelly has some excellent insight!

The Pink Underbelly

This post is not going to make you feel good. It will not mince words. It will not play devil’s advocate. The topic hits home on a very sensitive subject for me, and I’m not in the mood to play nice. Forewarned is forearmed.

Proceed at your own risk.

The American College of Physicians has released a recommendation that advises women to forego their annual pelvic exam because such exams cause “emotional distress, pain, and embarrassment.” As the ACP’s former president, Dr Sandra Adamson Fryhofer, stated, “The pelvic exam has become a yearly ritual, but I think it’s something women don’t necessarily look forward to. A lot of women dread it.”

The ACP also says that in non-pregnant, asymptomatic women with no known cancer risk, pelvic exams don’t often detect disease or save lives, and that the exams do more harm than good. Pap smears are still recommended, however, because they…

View original post 640 more words

First Pitch!

Published on July 31, 2014 by beatingcowdens3 Comments

We don’t watch many sports in my house.

Meghan’s sport of choice is swimming.

So it came as a little surprise when she was asked by the Borough President if she’d like to throw out the first pitch at a Staten Island Yankee Game to help draw attention to her platform and continue to raise awareness of Cowden’s Syndrome.

Meghan's friend has been a great support in so many ways. — Meghan’s friend has been a great support in so many ways.

She didn’t hesitate with the “yes,” although she admitted not being too sure of what she had gotten herself into.

Thankfully my very good friend has 4 boys. And among them they were able to locate some gloves and some baseballs for a few impromptu pitching lessons. And I have to say they did a good job.

Leaving for the game she had quite a nervous stomach. Once we arrived she was focused on a “practice pitch.” Once that was accomplished we had a few moments to take in the magic around us.

60 of our friends and family had taken time out of their lives on a busy Wednesday night to support Meghan, and our need to raise awareness of Rare Diseases. In addition, it was team night for Meghan’s Swim Team, so there were many of them cheering as well.

When we had first set the date, I wasn’t sure how public to make the event. I didn’t want to put people out. So I posted it on my Facebook wall a few times. I was floored. And intrigued. My cousin Kim asked me to order 23 tickets for her. I didn’t ask too many questions. My family is big enough that cousins have to trust each other.

We were greeted by Kim, and there were T- Shirts. It took me a second or two to process. Then I read it. Looked around. Choked back a tear and threw it over my head.

The pitch went off without a hitch, and the announcer crammed so much information into a minute it was amazing. It’s hard to hear, but trust me!

PRESS THE ARROW…

The night was just fun. Exactly how summer nights should be. The weather was perfect. The company was outstanding.

And, even as the crowd began to dwindle, we sat to watch the game, with the Yankees down 4-1.

And in the bottom of the 8th as it neared 10 PM, Felix and Meghan made a deal. If the Yankees scored in this half, we could stay till the end.

Four runs later, they pulled off a beautiful “come from behind” win.

And as we walked to the car we stopped at the “Postcards 9/11 Memorial” and we remembered how very lucky we are, even in the midst of chaos.

That first pitch, symbolic of overcoming challenges. Of conquering fears, and of new beginnings.

That win the Yankees had just pulled seemingly out of thin air, was the result of a refusal to quit.

They worked like a team. They made it happen together.

A perfect ending to a perfect night.

Here are pictures of SOME of our team. There are just so many more that support us each and every day.

We LOVE you all. Thank you for helping us tell the world. We are …

BEATING COWDENS together.

There are not enough photographs, for those at the game, and for those who are ALWAYS with us in out hearts. There are not enough words to express our gratitude for the love showered on us so regularly.

It is only with your support that we continue to push on.

MUCH LOVE TO ALL!!!

Compassion Saves the Day!

Published on July 25, 2014July 25, 2014 by beatingcowdens2 Comments

Instinct.

I don’t know why I second guess her instinct. Maybe one day I’ll learn.

We arrived in Manhattan early. We dropped Mom off so she could get to her appointment. We parked the car at a better rate than I expected. We walked a few blocks nice and slow. And we arrived at our 9 AM appointment by 8:35. Paperwork completed – we were sent down to the waiting area for MRI.

An empty room, and a few minutes to spare, I stepped into the lady’s room. No sooner did I get in there than I heard Meghan speak. “Calling us already?” I wondered.

I joined her in the waiting room and the shell-shocked look on her face was a mix of horror and confusion.

“Mom, I don’t want him to stick me.”

“Relax, you don’t know. He might be very good.”

“I’m telling you Mom, this is NOT going to go well.”

And, as I tried desperately to calm her rising anxiety, we waited.

We got called back and locked our things in our locker. The technician sized her up and decided her carefully planned outfit would work and she didn’t need to change. Then I asked him if I had to remove my jewelry.

“You can not go in.”

Calmly, ” I am sure I can, she has had countless MRIs and I have stood beside her for every one.”

“I will have to ask my boss. And, we have to see if the braces are OK.”

“But, I told them about the braces when I booked the appointment.”

“Well this is a very strong magnet.”

And with that he led Meghan inside towards the machine and she promptly backed away.

“Mom, my braces!”

To which the technician replied, “You’ll have to reschedule.”

And then the anxiety took hold and my girl began to shake.

“I am very very angry,” I began in my “not so nice” voice. “You have no idea the amount of planning that went into this, and the amount of worry that has been expended by my daughter.”

“I understand…” he began, in his patronizing, not very helpful voice.

And I honestly don’t recall if he got in another word, because Mamma bear was loose.

I can’t even quote myself, because I was that flipped out by this man who dared to tell me he understood. See, I can be reasonable. I really can. You can tell me you are sorry. But you can’t tell me you understand. Because just like I don’t claim to understand anyone else’s life – no one should flippantly tell me they understand. At least not until they have seen their child through at least 11 surgeries, countless procedures, ridiculous numbers of blood tests, multiple hospitalizations, and countless sub-par phlebotomists. Not until they have sat awake at night calming their child’s trembling fears by touching them – just so they stop shaking in their sleep. Not unless they know what its like to have candid conversations about pathology reports and the virtually insurmountable malignancy fears. Unless they have heard their young girl ask if her children will one day carry this mutation that has caused her so much heartache. Unless they have heard their 10-year-old consider whether its worth it to have their own children… one day.

See sometime two weeks ago we went for a routine follow-up at the vascular surgeon. He did a sonogram of the AVM that caused so many years of heartache, and surgery in 2009, 2010, 2011, and has been blissfully quiet since the last surgery there in February 2012. And he saw some “spongy” spots in there that needed to be looked at. So we scheduled the MRI, knowing that we “saw this coming.” The Celebrex had been destroying her stomach and controlling her knee. The ultimate catch-22. So the worry was about the MRI, and the needle for the contrast, and the wonder about WHEN, not IF the next knee surgery will be.

And all this was bottled up inside of me and came spewing out at this man who dared to casually tell me he understood what it meant to”reschedule” an MRI that had been deliberately scheduled based on time and location to correspond with a trip to the oncologist, and spare her an unnecessary day wasted at a doctor’s appointment.

And as I cried for a supervisor, Toni came flipping around the corner. She sized up the situation, gave Meghan a blanket, sat her down, and told me she was going to fix it. And she did.

I have never in my life seen a supervisor in any capacity who was beyond competent, and extraordinarily compassionate. She got INTO A TAXI WITH US, and took us across town. She walked us into the facility, the entire time reassuring Meghan that she had a special nurse who would handle the needle. I saw the look in Meghan’s eye that said, “That’s what they all say.”

But Toni didn’t lie. Within minutes of walking into the facility we were greeted by Allison, and Manny. Both talked to Meghan. They looked at her arms. They told her a blind person could catch her vein. They told her it would be a butterfly. They told her no IV. They let her pick who would do the contrast dye and did it in such a reassuring way that she knew neither would feel badly if she picked the other.

MRI Dog (Rocky) always helps too... — MRI Dog (Rocky) always helps too…

Then Michelle and Chad made her feel like an old friend. They were so warm and comforting. They positioned her just so, and reassured her in such a way that she took this incredible deep breath. And when Allison came in to give the contrast dye, Chad held one hand, and I held the arm and she never even felt the needle. Chaos turned into probably the most successful MRI to date. Sweet relief.

We had NEVER been in a machine like THIS before!

But we left the facility only for me to realize we were now clear across town without our car. I held my breath and hailed my first cab. (Put that on the bucket list, and took it off in the same day!)

An hour with the oncologist, always plays with my mind a bit, but there will be time to process her recommendations for vigilant screenings necessary with Cowden’s Syndrome.

We left at almost 1, feeling quite like we had already lived several days. Then there was this matter of the “Treat Shop” on the upper West Side. I had planned to go because it was so close to the first MRI site… but not too close to our car. I walked, she limped by the end, and I am sure I will pay for this for days, but we made it. A small store full of glorious Gluten Free treats. And there were 6 dairy and soy free options as well. Heavenly – and my daughter said, “worth the pain!”

An afternoon playing with a friend from school, and the sound of girls giggling, made the horrendous morning, and the most unforgiving traffic I have seen in recent memory begin to leave my neck and shoulders. As the tension began to release I found myself reflective. Hopeful. But still unsure.

Watching her at ease on the couch I am reminded not to plan. I am reminded to trust Meghan’s instincts. I am enjoying the cool breeze, and for the moment the uncorrected mess.

I am grateful for Toni, and Manny, and Allison, and Chad and Michelle. If only everyone took their jobs so seriously. Healthcare, and the world for that matter, would be in a much better place.

Even if just for today they made BEATINGCOWDENS a little easier.