Gratitude

Published on November 26, 2014November 27, 2014 by beatingcowdens4 Comments

Gratitude.

It’s always a good time to be grateful. Especially Thanksgiving week with catastrophe averted. Even full of memories from a year ago, I feel gratitude.

Just a week ago I wrote a post called “Plot Twist”

https://beatingcowdens.com/2014/11/17/plot-twist/

where I mentioned the AVM in the knee was starting to become a problem.

One day I will learn to trust instincts. I will look back on signs and think – I should have seen that coming. But, for now I remain a bit of a slow learner.

See, in May when we ended up with the gastritis mess, there were warning signs. For days prior she spoke of the “fire” in her throat. Of this general feeling of being unsettled. And then everything broke down.

Monday was not the first time in recent weeks she had complained about the knee.

In August, about three months after we stopped the Celebrex, there were signs. Subtle signs. We went for the MRI. We went for the visit. The doctor saw “something,” evidence the AVM was still “live.” He told her to wait until there was pain, and then come see him. Our appointment was for December 1.

The pain has been progressive. But, right or wrong, having a rare disease, and living with a child who has one too, I often have on my “suck it up and let’s go” personality.

“Mom, my knee hurts. I think it’s swollen.”

“Yes. it’s a little swollen, but mine is too. You’ll be ok.”

“Mom, my leg is throbbing. I can feel it pulsing.”

“Mine does that too – here, feel. Now let’s go – we have to get to school”

Ok, so looking back, perhaps these are not normal conversations. I am in consultation with a vascular surgeon to address the messiest of my leg issues – as soon as I can fit it in. Maybe most parents would have been more bothered. I mean I WAS bothered. But, if I stopped every time – goodness, we’d never even get out of the house. If I addressed every pain – I’d give this disease more power than I’d like it to have.

So for now, we “suck it up” together. Different. But the same.

We talk about other people’s pain. We wonder about different types of pain. We think about what it would be like if the pain could be fixed. We wonder about kids who use pain as an excuse. We acknowledge that you can never know what goes on in someone else’s body.

So we adopted positive thinking and visualization. She drew a smiley face on that knee to convince herself she could get through it. And she pressed on.

Sunday, while I was in Vermont, she was at a swim clinic. And Monday, she finished an hour and change of practice. Walked past me smiling. Walked out of the locker room and basically fell to the floor.

I did some more of my “suck it up” talking, as my heart sank. This was the real deal, but we were too far from the car. Everything about her body language told me we were in trouble. I finally, by Grace alone got her into the car, and headed immediately to urgi care. We lasted about 10 minutes there before we were booted to an ER. The leg was getting frighteningly larger by the moment.

My gut. My instincts told me to go to the knee surgeon. So we threw a bag together and got to Lenox Hill Hospital on 77th street.

After I got them to page her doctor, we immediately were notified we’d be admitted.

When we got to the room at 4:30 AM the tell-tale “NPO” (nothing by mouth – for any surgery rookies) was on the door. Can’t knock the kids timing. I knew he operates Tuesdays.

The team arrived mid morning to assess. They set her up for 1 PM surgery.

“That’s blood. And it has to be taken care of now.”

Ok – show me where to sign.

Blood and joints don’t mix. Not without consequences. This I know from experience with this child.

Get it out.

And as I waited… that awful waiting time… my mind wandered. I thought about her swimming, and the time she is trying so hard to beat. I thought about how much harder she’ll need to work to get it back together. I thought about it being unfair. And I thought about a mom in California whose extended hours on the phone to me as we were panicking and newly diagnosed were of such solace. I though of the hell her girl has gone through. Over and over. Then I thought about my internet friends in Australia. One young lady who had her thyroid removed AGAIN. Yep – two partials, and then one side GREW BACK. Unfair. Then the ultimate lesson in unfair in the countless brain surgeries, 10, 12 hours at a clip for a young woman with a similar vascular condition to Meghan in a much more dangerous place. I thought about her life on hold. I thought about her recent surgery derailed as they discovered multinodular goiter on the thyroid. I wished I could have tea with them. Right then. To talk to someone who does this. This hospital thing. This surgery thing. Like its their job. Cause that’s just what we do.

And there are no contests. No one has to have it worse. No one makes you feel like it’s not important. This just is our life. This is life with Cowden’s Syndrome. Beat it. So it doesn’t beat you.

And when they came to get me, to tell me she was in recovery, they told me they drained 50ccs of blood out of that knee-joint. Apparently there was a hole about the size of a pea. It got plugged. A fast flow leak. They hope that’s all of it.

This is about 50ccs of water - roughly the same amount of blood that filled her knee joint. — This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.

Flashback to 2012. Last surgery, when the doctor was so unsettled that there was ANY blood in the knee-joint that he told us about the damage it could cause and sent us to Boston for a consult with a doctor who could scope the knee-joint. And we went. But we never went back. Things got better. We started Celebrex a month after that surgery in 2012. That was number 4. Number 5 was yesterday.

In 6 weeks we’ll go back for post-op. We’ll talk about whether things are better. There is someone in New York, on his team, doing that scope now – if she needs it.

In 6 weeks I hope she’s kicking some serious butt in the pool. I hope this is a memory. An update in the growing medical file.

This is life. This is life with Cowden’s Syndrome. This is our life.

Everyone has something. And yes, it could be worse. But right now, at this moment – we are tired. And that’s OK too. I am emotional, remembering a year ago today we admitted my Dad to the VA hospital that he would never leave.

Thanksgiving will be quiet tomorrow. Just the three of us. And reflective. This week is going to be wracked with emotion.

For tomorrow, I’ll take the fact that my husband makes a mean turkey and a fantastic Gluten Free stuffing as a win.

The little things ARE the big things. We ARE BEATING COWDENS!

I used to be afraid of roller coasters

Published on November 25, 2014November 25, 2014 by beatingcowdens1 Comment

I used to be afraid of roller coasters, and their short, fast twisting, turning excitement.

Then I realized roller coasters and life have a lot in common. So I started riding them, cause really -what the heck?

If there has ever been a lesson in the unpredictable nature of life, I am confident it has played out in the last two or so years. And I am confident I have studied hard, and that I understand. I understand that just when you think you might understand – you don’t.

You see, just when you think you may even comprehend the every-changing, unpredictable nature of life around us, there will inevitably be a way to prove to you you don’t have it quite right.

There have been more funerals this year than I care to count. Maybe its always like this, and I am just noticing now that 40 is behind me. Or maybe not. But there have been funerals for friends, for the brother of friend, for my own father, for my uncle, the precious father of three beautiful adult children, and for my Grandma, and a well-loved great-uncle, and the grandparents and parents of friends… and…

As I sit here thinking about all of them I try for the umpteenth time to rationalize. And I get farther with some than others. Some will just never do.

But the ultimate realization is that it’s not really mine to figure out. It’s not mine to decide how it fits in the grand plan. And I’m trying to stop looking to figure it out. Because, boy it can be exhausting.

And as I sit here in the wee small hours of the morning, I remember – that painful Thanksgiving week last year, as Dad fought and fought, and I wonder why. But, as much as I miss him, it’s not in a pitying kind of why. It’s in a genuine curiosity for something I will likely never be allowed to understand. Very much the way he used to ask me why he made it home from Vietnam and his friend Tommy didn’t.

It’s the same kind if why when Mom asks, why after being 18 years a breast cancer survivor, why she is “clean,” and so many have lost the fight.

As I listen to the rhythmic snoring of my husband, and watch my fidgety sleeping 11-year-old, I wonder.

I wonder how we ended up here – again, on the second floor of this hospital. Today. Now.

12 hours ago I thought I was tired. HA! What did I know.

450 miles in about 30 hours to celebrate the life of a great man, my uncle. Lots of driving, lots of thinking, lots of observing. Lots of admiration for his children, grown up children, who undoubtedly will make him proud forever with their compassion and good humor. Lots of respect for his wife – living her marriage vows through all the crappy stuff with poise and dignity. Lots of awe for my other Dad Ken, and GGMa, his mom, as they stood together, their original immediate family ripped in half in just over 2 years time.

12 hours ago I thought I would go to bed early.

But I ended up picking Meghan up from swim practice on the way home from Vermont. And she walked out of the locker room and almost fell to the ground with tears.

“I can’t walk. It’s my knee.”

And I checked off the list – Did you fall? Did you bang it? Did you hurt it doing dryland? One at a time I asked the questions, even though I knew the answers.

This knee. The one we’ve been waiting for since we stopped the celebrex had finally given way.

We had had hopes of finishing swim season first. That was before we had to refocus our hopes to making it into urgi care without falling.

We were promptly told to get out, and get to an ER. Fast. The swelling was too big.

Still in my funeral clothes I raced home long enough to tell Felix to dress for work, and to get into some sweats. A quick bag for Meghan and I and we were off. This time to Lenox Hill ER. Cause that’s where they do the knee surgeries. And not that I’m trying to plan. But just in case… Maybe we should be at the right place.

They contacted her doctor. He’s sure it’s the AVM, but he’ll confirm in person in another hour or so. In the mean time nothing to eat or drink for Ms. Meghan after midnight. Just in case.

AND regardless – we remain BEATINGCOWDENS!

Plot Twist!

Published on November 17, 2014 by beatingcowdens2 Comments

We are thinking we are far from alone in appreciating this Facebook post from the Global Genes Project. I mean these days it seems more than ever, I barely talk to someone whose life isn’t taking major, unforeseen “Plot Twists,” on a regular basis.

Whether it is the sick parent, or parents; the terminally ill or recently passed loved one; the stress of work, moving, new job, or the new house, life has a habit of not going according to plan. Brain surgeries interrupted, recurrent thyroid surgeries. The list really goes on and on. The only constant being change. And not on our pace, or our time. God alone knows the true plot of our stories.

Some have almost played out and are nearing the climax. Others are barely introducing the characters. And the older you get, the more you realize that doesn’t have as much to do with age as you might have once thought.

Sometimes I want to read faster. To see what comes next. To see how it all works out in the end. Sometimes I want to hide the book in a deep crevice, in a padlocked safe and convince myself that if I just don’t look at it, everything will be OK.

My logical mind knows that neither is true. And I, like everyone else, am left to brave each day doing the best I can with what I have, where I am. I am left to do my best to be kind. To realize everyone suffers battles. To pay it forward when possible. To pray for the best, and have faith when the worst hits.

We plod along here. The leg is getting worse. Much worse. The AVM is rearing its ugly head. A “Plot Twist” indeed. See in May when she spent a week in the hospital with severe gastritis, they said no more Celebrex. No one except Felix and I got the gravity of that statement. Celebrex had been in our lives since March of 2012, a month after the 4th knee surgery. And the knee had been remarkably quiet. You see in our lives, the life of Cowden’s Syndrome, Celebrex is used to treat AVMs – which are pretty common among us. It helps with the pain, and it has an affect on angiogenesis, which affects the flow of the blood.

Except the Celebrex, according to the report, had caused a very sensitive GI tract to go totally haywire. They said it caused 6 days in the hospital, dehydration, IV fluid, and a hot mess of tests. Over and over Celebrex took the blame. The drug she had taken peacefully for 2 years had finally said, “enough.” The esophagus was so damaged it looked like a 70 year-old man belonged to it. No more Celebrex. No more NSAIDs. At all. We were scared. Something had definitely gone wrong.

“PLOT TWIST!” Cause those drugs were keeping her walking, sometimes running, swimming, and playing.

But we wonder, her Dad and I, if that was really that simple. Our girl has been on some time of Protein Pump Inhibitor since she was 4 months old. She takes pancreatic enzymes to aid her digestion of a very restricted diet. And still we have always had to “pay attention.” Maybe it was the Celebrex. Probably it was the Celebrex. But what if it wasn’t?

When we left the hospital in May we figured 6 months before the knee was a serious issue again. It started in August. It’s getting worse.

On December 1st we’ll see the doctor who has dealt with it each time before.

But now we have an athlete. A swimmer who LOVES to compete. A swimmer with goals. Attainable goals. The time on Celebrex gave her time to get a taste of swimming. And she likes it. A lot.

So there will be some balancing to be done. How long is it safe to wait? How long can she stand to wait? How much of the season can she swim? How much pain can she take? How big is the AVM?

We have things to focus on. The February find raiser has us excited, and occupied. We will keep busy.

The story will unfold. Some of the best ones have multiple plot twists.

I mailed 15 pounds of medical history to the doctor who showed a hopeful interest a few weeks ago. She’ll have it tomorrow. Now let’s see what becomes of it.

Life doesn’t allow for planning. Mom keeps telling me. This year there is more up in the air than down. And yet, the days will come, one at a time. We will meet them, deal with them, and move on.

Cause really what other choice do we have? What choice do any of us have?

Saturday as she cleaned the music blasted. Katy Perry’s, “Roar”

…You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now…

…I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar…

Kid of Achievement!

Published on November 12, 2014November 12, 2014 by beatingcowdens4 Comments

Today I turned 41. And while I am incredibly grateful for the gift of life, and for “More Birthdays,” as the American Cancer Society once put it, my birthday holds all sorts of emotional challenges for me.

I have a memory for dates. And seasons. And events. And people. Especially people I love a lot. And 23 years ago on this November day, my beautiful 6 year old cousin Meghan was invited to dance with the angels. Childhood Leukemia weakened her body so, that she was not to stay here physically. Yet on my 18th birthday I got the gift of the most spectacular guardian angel – and her name and her spirit live on in my girl. Even with all the good, the day messes with me. I tried explaining it to my Meghan last night, and the best I could give her was – 23 years become 23 days sometimes. The pain just gets a whole lot more fresh.

And Grandma, Dad’s Mom got her wings just a few weeks ago. After 88 years and a life well-lived, it was still tough to see her go. Not even a year since Dad…

And last November 12th, on my 40th, my Dad was in the middle of what was to be the fight of his life. We spent it together. An unsavory appointment, and some legal crap I wish never had to be.

And this year a dear, compassionate, kind-hearted, fun-loving relative sits, so close to the end of his life here on earth. My heart just gets full.

So, it came as a pleasant surprise last week when my cell phone rang and it was Gina from the Staten Island Children’s Museum, telling me that Meghan had been selected as one of this year’s “Kid of Achievement” honorees, for her advocacy work in the community. The luncheon was to be held on November 12th.

“Of course we’ll be there.” And I couldn’t wait to share the news with her.

We kept kind of quiet while she prepared her speech, and I sent her to school this morning with her backpack and her speech and a pretty dress. Quite a swap from her typical sweats.

We arrived at the Hilton Garden at 11:15, sized up the room that we will be in for our fundraiser on February 15, 2015, and checked out the raffles. We met the other honoree, a lovely young woman being honored for her work with Project Homefront. The tables filled in and the event began.

When Meghan was introduced for this award, her advocacy was the focus. Her nominee(s) knew her history. They knew of her work, and her goals.

She delivered this speech with incredible poise.

When my mom got the call that I received this award, I was thrilled. All of my advocacy began with me wanting to make a difference. I am so honored, and humbled to realize that I am.

I was diagnosed in 2011 with a rare genetic disorder called Cowden’s Syndrome. It affects 1 in 200,000 people and it starts from a broken PTEN gene. The PTEN gene is the tumor suppressor. The PTEN gene prevents benign and cancerous tumors, but since mine is broken I have a higher chance of getting these things.

My Mom was diagnosed weeks after me. A few months after that she was diagnosed with early stage breast cancer. She had some pink ribbons around the house, and she got a pink ribbon Pandora necklace.

I knew about the gold ribbon for childhood cancer, and the puzzle piece for autism. I knew there were many others, and that all these disorders had a symbol, and with a symbol comes a voice. I had many medical issues, and went to the doctor all the time. I knew there had to be symbol for people/kids like me; kids who’ve had eleven surgeries in eleven years, kids who’ve had countless tests and are treated like human pincushions. Imagine, all this happens to prevent cancer. There is no simple solution, only a constant set of routine poking, prodding, tests, surgeries and more!

We kept looking for a symbol. We found one when we came across the Global Genes Project. They stand for all rare and genetic disorders, their symbol is the denim ribbon, and their slogan is “Hope, it’s in our genes.” But, there was not a necklace, no jewelry. There was nothing to wear to help me show people, and tell the world about genetic disorders.

I asked my parents if we could get something made, and we did. My parents found a compassionate and caring jeweler who created the mold for the necklace I am wearing today. We reached out to the Global Genes Project again and again, in hopes they would sell the necklace too. Recently, they put a similar necklace on their market, and I can’t wait for it to become as popular as some of the popular pieces I have come to know.

Rare and genetic diseases are out there. Most are very rare, but there are over 7,000 of them. More work needs to be done individually and collectively, to get them the funding they need

In 2013, just about 18 months after our diagnoses, we celebrated “Rare Disease Day” which is February 29^th – the rarest day- or February 28^th on non-leap years, by handing out denim ribbons at our schools. We had assemblies, and I got to talk to my peers about what it was like to live with a rare disease every day.

I have had 4 knee surgeries for a vascular malformation in my right knee. I have a good deal of pain in my body, there, and pretty much all over. Some days I feel great, and other days I can’t get too far. One day in the spring of 2013, my mom was pushing me in a wheelchair to an appointment. I was annoyed by the number of people staring at me and talking about me. I heard things like, “lazy,” and “she’s not sick.” I decided I could be angry, or I could do something. While I definitely spent some time through the years being angry at some of the things – like running- that Cowden’s had taken from me, I decided instead I was going to DO something.

That night my Dad helped me design a business card that very briefly explains Cowden’s Syndrome. I have handed out hundreds to those who stare, and to those who just care. I like to spread the word, one card at a time.

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

This year, right before Rare Disease Day in February, I had my thyroid removed. Thyroid cancer is very common in young people with Cowden’s Syndrome. My thyroid had been watched since my diagnosis, and it went from having 4 nodules in 2011 to 16 nodules and 3 precancerous tumors in 2014. I was fortunate, but the surgery was rotten, and it has been hard getting the medicine quite right. I have been called a “Previvor,” which is someone who has an organ removed before the genetic cancer that is looming has a chance to strike.

This kid is clearly a "FORCE" to be reckoned with! — This kid is clearly a “FORCE” to be reckoned with!

This year, for Rare Disease Day, I decided to raise some money. We sold T-Shirts at my school and we had a fundraiser. The money all went to the Global Genes Project, and it felt really good.

At my old school, in February, I also met the Borough President. He took such an interest in my story, he made me feel awesome. I have visited Borough Hall a few times, and love talking with him. He has encouraged me to keep dreaming bigger and I will.

Two weeks ago my Mom and I signed a contract with the Hilton for a fund raising breakfast on February 15, 2015. We will be raising money for the Global Genes Project, and the PTEN foundation. The PTEN foundation is a new organization, working just for PTEN disorders like Cowden’s Syndrome. We hope to have raffles, and T shirts for sale. We plan to have music and fin.

We set up ticket sales through eventbrite, and we called it “Beating Cowden’s First Annual Jeans for Rare Jeans Fundraiser.” Sales are open to anyone who wants to come support two great causes.

I am on a mission to spread awareness and raise funds for diseases people know too little about. I will not be satisfied until each of them has the recognition they need, and the cure they deserve.

Thank you again for this award, and for encouraging me to continue my mission.

Here is a video of her speech.

And when she was met with a standing ovation there were tears in my eyes. Tears of pride.

One after another people approached her, and complimented her.

Not a single one would have known the strength it took for her to walk in the room today. The pain was unbearable. But she did it. With grace and a smile.

And in addition to the compliments, there were offers to help. Real, genuine offers.

We will Email some of our new friends tonight. And with their help, in February we will blow this fund raiser out of the water.

Kid of Achievement indeed.

World, you haven’t seen anything yet!

Here’s the link to our local paper….

http://www.silive.com/westshore/index.ssf/2014/11/staten_island_childrens_museum.html#incart_river

And while you’re at it – book your tickets for February 15th!

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

Competence, Compassion and Dedication? All at once!

Published on November 4, 2014 by beatingcowdens3 Comments

Yesterday afternoon began very typical of so many of our days. I left work, got Meghan at school, and instead of heading home we headed to 60th and 5th for a doctor’s appointment.

Trip to Manhattan, not a problem. Trip IN Manhattan – super high stress.

Felix met us and I was able to let Meghan out of the car to endure the extra 20 minutes needed to get around the block to the parking garage I had printed a coupon for. Silly as it may sound, that advanced planing has saved me hundreds of dollars – as our bill yesterday alone was a meager $35 for the lot as compared to the $63 it could have been.

Inside we filled out tons of paperwork, Meghan and I as new patients, and Felix in for his one year follow up. It was the first time we’ve actually had an appointment as a family.

Last year we ended up with this doctor for Felix after a skin biopsy went bad locally. It took weeks for me to obtain less than favorable results, news of unclear margins, and the potential wait of several weeks for a repeat excision. I promptly transferred the biopsy slides and all information to a cancer specialty center in Manhattan and we met our doctor. She had the slides reviewed and told Felix that not one, but BOTH sites biopsied needed further attention. She took them to clean margins and ultimately diagnosed him with “Dysplastic Nevus Syndrome.” He had been fortunate. Precancerous lesions cleanly removed. Annual screening from then until forever.

This year Felix squirmed a bit when I talked about his follow up, but I knew if we could all be connected to this doctor it would be a win all around. Little did I know the scope of the score it would be.

Meghan, now with not only Cowden’s to raise her skin cancer risk, but also the genetic “dysplastic nevus syndrome” potentially inherited from her father, needed a dermatologist in place for annual screenings – ASAP. And for me, well, it was something I had been doing, but not with someone too good. Time to ratchet it up a notch.

The doctor was amazing.

She immediately made Meghan feel comfortable and valuable, and spoke with her at length about the presentation of Cowden’s Syndrome she had experienced. My daughter is incredibly empowered about her own health and held a 10 minute conversation quite nicely. While I filled in a few gaps, the doctor told us she had worked previously at the NIH, (National Institute of Health,) and the NCI (National Cancer Institute) and was therefore, aware of Cowden’s Syndrome. That alone is a rarity in our world.

But she took it much farther than that. She wanted to know about the disease presentation in me as well. She wanted to know how much had gone on before and after diagnosis, and how difficult of a path we had traveled to try and find knowledgeable doctors. She was in constant thought, wondering about what she could do. She spoke almost immediately about training her peers to be the front lines in screening for Cowden’s Syndrome, and how if they could identify classic marks like the trichilemmoma she removed from my forearm, they might be able to raise flags early and help save lives.

Harmless enough, common in Cowden's Syndrome, she wanted one confirmed though biopsy. — Harmless enough, common in Cowden’s Syndrome, she wanted one confirmed though biopsy.

Healing... less than 24 hours later. — Healing… less than 24 hours later.

She wanted to know what we had in terms of screening, and records. What could I send her? CDs? Images? PDF? How fast? She could have my CT scan reread for no fee. Just send everything. (Of course everything is in about 6 inches of binders. So there is sorting and scanning to be done.

What is this http://www.PTENfoundation.org ? She wanted to know. Can she refer people there? What if she publishes in a dermatology journal? Could she list the foundation?

My head was literally spinning – but in a good way for once.

I am going to present on you she said, both of you. But no one has to know its you.

And finally a doctor who ALSO feels this way!

“Can I come?” asks my curious 11 year old.

“Of course…”

And as she took such a liking to Meghan she asked me who was managing her care. When I said, “me.” She was visibly bothered for me.

Someone should be looking after her. Let’s think about what she needs. And with that she rattled off doctors to handle things I couldn’t get my local doctors to address with a ten foot pole. She told me I’d hear from her this week, and from some other doctors too.

I left with three negative exams, 6 months for me and Meghan, and a year for Felix. I left with my belly hungry and my head racing.

Was I dreaming? Had I really finally found the doctor to help us?

No one should have to travel your path alone, she said. You need help navigating.

From her lips to God’s ears. May she be true to her word.

In the mean time I have quite the homework assignment.

So as I sit with my “eventbrite” window open, excitedly hearing the “dings” of attention out February Fundraiser is generating – I am going to get started on perhaps the most important homework of our live

Vascular Road Maps and other Cowden’s adventures…

Published on October 3, 2014 by beatingcowdens3 Comments

I sometimes hate the saying that things work out the way they are supposed to. Sometimes I just don’t buy it. But, then there are other times.

I have suffered with varicose veins since I was in my early 20s. I had 2 stripped surgically before I was 30 I had 5 VNUS closure procedures in 2011.

Over the years I have tried compression stockings, switching to comfortable shoes, losing almost 40 pounds, and the veins just keep on bulging.

It gets to the point that the throbbing in my legs is the last thing I feel before I close my eyes, and the first thing I feel when I wake up in the morning. During the day I get distracted. And when I get home at night to take off my shoes and switch to pajamas, the size of my legs is noticeably larger. The swelling is evident. The blue veins bulge.

Although this is far more than a cosmetic issue, the ugliness and the irony doesn’t help. Last summer I bought shorts. In a size 2.

This is not my leg - but a close comparison... — This is not my leg – but a close comparison…

This summer I barely ever wore a pair, and despite having a pool at home, I never put a bathing suit on.

As Meghan has battled with her AVM (Arteriovenous Malformation) in her right knee since around 2009, I have learned more about the vascular malformations that can be associated with the PTEN mutation that causes Cowden’s Syndrome. It seems the connection is documented, but small sample sizes make it hard to study the specifics of this rare disease and all its variations in detail. See there are differences even within the PTEN mutations that link us all. Some are germline mutations, some are frameshift, some are missense, others nonsense. AND, there are further specific differences too complicated for me to process. It seems, in layman’s terms, that each mutation manifests slightly differently, although there are major criteria that link us together.

And, it seems that the frameshift mutation Meghan inherited from me, is likely at the root of our vascular problems.

Another symptom I have dealt with for years, explained, but not gone after this PTEN diagnosis.

I had an appointment with a highly recommended vascular surgeon on Tuesday. I expected what I have come to expect.

There was the sonogram. The attempt at settling out the roadmap of veins, so many of which have already been treated. It is no easy task, and I leave them at a disadvantage because I have had my vascular work done in several different facilities. (You can read that as difficult to please.) Though for the first time I was told that the deep veins in my left calf are so dilated that they are at great risk for blood clotting. The blood sits stagnant there. That apparently is not the most intense of my issues.

Then there was the visit with the doctor. A young, bright eyed, refreshingly competent doctor who was very interested in my Cowden’s Syndrome, and my previous abdominal surgeries.

He asked if things got worse with the vein in my leg after the tubal ligation in 2011.

“You mean the hysterectomy?”

“No, that was the following year.” He was reading from a sheet I had given him. He was right.

I guess somehow I had blocked the tubal ligation which had become unnecessary less than 12 months later when Cowden’s and a uterine polyp (post breast cancer) necessitated a full hysterectomy.

“I’m not sure, why?”

“I am wondering what is causing these veins to turn. And I have to look at every possibility.” As he places his hand on my abdomen.

“How long had that pulsing been there?”

“Um… I don’t know. (Feeling incredibly dumb for ignoring my body) Why?”

“Well, I won’t even consider surgery without some major tests. First I want a full abdominal CT to check for vascular malformations.”

Now truth be told I wasn’t shocked to hear this. I had a nagging, behind the ear voice telling me to get that pulsing checked out. But I had met with a vascular surgeon in July and that turned train wreck. So I was a bit delayed. I also I guess didn’t really like the fact that he could feel the pulsing too. I thought, well I thought that was just mine….

So I left with a script for the CT, waiting for authorization, and a script for blood to assess my kidney’s capability to handle the CT dye.

And as I tried to process that, I thought of everything. I ran the gamut from aneurysm to AVM.

As I washed my hair the next morning (I do my best thinking in the shower) I had one more thought.

MY SPLEEN!

I had never mentioned my spleen. The hamartomas/lymphangiomas/masses on my spleen, the largest of which are 4 cm round. I was told they are vascular. I have been watching them with periodic MRIs and I was told as long as they stayed stable I could keep my spleen.

I really hope they aren’t misbehaving.

I like my spleen.

I also like that this doctor cares enough to check everything out first.

Pain in the butt? Absolutely. Life-changing? Maybe.

The other doctor was ready to take the vein out in the office with no prior testing. This guy told me I need an ER and tons of pretesting. You know what? At least he takes things seriously.

So now I wait. For authorization. For testing. For a whole host of inconvenient to schedules to processes.

And fortunately there isn’t much time to waste on worry.

Life is busy. We squeeze what we need to into the crevices.

We can’t let Cowden’s Syndrome distract us from this life that needs living.

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

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.

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.

Scars…

Published on July 19, 2014July 19, 2014 by beatingcowdens3 Comments

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival. Maybe it’s maternal instinct. Maybe it’s denial. Maybe it’s some combination.

But then there are days that it smacks me right across the face. And it ~~stings,~~ no, actually it’s more like a scalding burn.

I post mostly about Meghan. She’s my hero. She’s my inspiration. She motivates me to be a better person, every day. But, if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed.

I feel good. I really do. Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars. They hide behind my clothes like a little secret. Cause people forget. And that’s what I want, because most of the time I forget too.

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time. And my shirt doesn’t sit quite right. And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction. I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal. It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week. My two-year follow-up. Hard to imagine. She gently reminded me again that she could even things out whenever I was ready. No cost thanks to the positive pathology for breast cancer, and the genetic mutation. No monetary cost. I’m not ready. Yet.

I saw the breast surgeon last week too. I see her every 6 months, so she can make sure nothing sinister is growing behind those implants. The reality and the reminder that as fortunate as I was – I still had breast cancer. And once you know for sure that those malignant cells had life in your body, you never look at things quite the same. “No lumps or bumps,” she happily reported. “See you in 6 months.”

I can’t wait.

And there are the lymph nodes in my neck. They were checked last week too. Sonogram. As long as they stay stable, we can leave them alone. “But, if they grow…” she reminds me every time. Six months for her too.

And my legs. Fitting into the smallest size they have ever in my life the veins are protruding again. The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23. But, it doesn’t really matter I guess. The legs start with a familiar heaviness. Then there is the throbbing. The last thing I feel before bed, and the first thing I feel after the alarm gets shut down. And the pulsing – like I can feel the blood moving the wrong way through the broken veins. And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2. I switch to “Bermuda” length and some sundresses. I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too. Everything ramped up a notch with the “Cowden’s Syndrome” label. There are no “regular” visits anymore. Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital. Two years since the hysterectomy too. Time marches on. You can barely see the scars from the laproscopy. But I know they are there too. A few inches under the implant scars. Reminders of the year that changed my life. Our lives.

The week finished with genetics. Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man. He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis. Then he drew my blood. More genetic testing. This time not because of the Cowden’s Syndrome. This time, it is to fulfill the wishes of my father. Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about. We both said a silent prayer that the test yielded a whole lot of nothing. We hugged again. It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right. The indentation on the right side was causing the shirt to fit lopsided. And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take. I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share. Yet, I want so badly to help her maintain some of her youth. Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young. There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

It only took a minute. Although it seemed longer. A hug from my husband. My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss. And it was time to shake it off.

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently

I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.” We met a lovely woman who was surprised we weren’t raising money for us specifically. We explained that we were grateful. I feel well enough to work. We have good medical coverage. There are so many not as fortunate.

When it gets to be too much, I know to fix my eyes on things far beyond the mirror. I have a greater purpose right in my own house. And WE have a greater purpose.