Thyroid PREvivor!

Published on February 21, 2014 by beatingcowdens8 Comments

The phone rang at about 7 PM. It’s Friday night. I did not expect the call to be from the nurse practitioner at the endocrinology office that manages Meghan’s care.

Wednesday we went in for a surgical follow up appointment. The incision is healing nicely. She is still sore but cleared to return to school Monday… and swimming too. While were there, they asked for some lab tests to be rerun.

Calcium levels which were botched Friday before discharge needed to be looked at again. And the parathyroid hormone to make sure it was still functional.

Before we left the facility, we received word that the calcium levels were actually high. No need for me to even start ranting again.

We were advised to keep her on the current supplementation level for 4 weeks, then wean her off and revisit the surgeon in 8 weeks. We would also see the endocrinologist at that time. Although, endocrinology would be ordering lots of labs in the mean time. All of this I understand.

Except, when the nurse told me she was calling, at 7 on Friday night (when the results from Weds. labs were in the system on Weds) to tell me to keep Meghan on her baseline calcium (the Isagneix Calcium she has taken for almost a year) and lower the supplemental pills they gave from three to two.

Seems logical. EXCEPT when we were discharged in that debacle Friday night they altered the script from 3 to 2 already. So so we go down to one?

The nurse stuttered, confused. I still don’t think anyone understands what a mess they made out of her care on Friday. No, she said. We will rerun the calcium in a week. Anyone want to wager that it will be too high?

As she went to hang up I asked about the pathology I had been waiting on pins and needles for. Almost as an afterthought, she said she didn’t think it was in. Then, “Oh, it’s right here… want me to send it to you?”

Um, YES.

“Everything seems ok, do you have a fax?”

YES!

And that was the end of the conversation. Left to read the pathology report on my own I pored over it as best I could. Confused that it was date stamped 6PM on Weds…. and I found out it was in by accident. But, whatever…

So without the aid of a doctor, and with my somewhat well developed medical vocabulary, everything looks to be

BENIGN!!!!

There are things about it I don’t like, of course. Like that some of the “lumps” are referred to as nodules, while the three problematic ones are called “tumors.” The largest of these tumors measured 2.4 x 1.3 x 1.3 cm, and the others were not that small either. No wonder this kid was choking! There is “hyperplasia” all over the place too. But it seems like the bottom line is, we got in in time.

Cowden’s we BEAT YOU to it!

Of course there is no crystal ball. There is no way to say for sure that it WOULD HAVE become cancerous, although I think we all know the reality. There is no way to know if it could have stayed in a little longer, but I like to think eliminating the anxiety over the constant FNAs, which incidentally had caused quite a mess of scar tissue according to the surgeon (THANK YOU COWDENS!) will be the better choice in the end.

It is ~~easy~~ easier, to make decisions about prophylactic organ removal when it is your own body. You just do what you have to do and move on. But my husband and I had to make the conscious decision to remove something from our child’s body. Can she live without it? Absolutely. But just because you CAN live without something doesn’t always mean you should, and it doesn’t mean that removing it is without consequence or effect.

As a new mastectomy patient I read lots of stories of brave young women who had decided not to spend their lives waiting for cancer to get them. They had taken steps, usually to get ahead of BRCA1 or BRCA2. I immediately admired each of them. They somewhere along the line coined the term “PREVIVOR.”

https://www.facingourrisk.org/FORCE_community/previvors.php

Primarily used to deal with the risk of hereditary breast and ovarian cancer, I think the term has a broader reach. My girl does not need to be a thyroid cancer survivor. She is a PREVIVOR. She got there first.

For this I am thankful.

BEATINGCOWDENS!

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.

What if every day was a snow day?

Published on February 3, 2014 by beatingcowdensLeave a comment

Now before you jump through the page – hear me out.

The kid in you may be cheering. “SNOW! FUN! PLAY! ”

And the grown up in you may be growling. “TIRED OF SHOVELING AND GETTING STUCK AND BEING COLD.”

But actually, neither is exactly what I meant.

I got a message around noon that my daughter was hurting. The pain has been bad again. The weather doesn’t help. I fought through a wicked virus last week, and there is always the possibility of it eating at her. Her nerves are shot. The thyroid consult is Thursday. Consciously or not – she is worried. I’d be shocked if she wasn’t. I am too.

And between the weather, and the stress, there is the pain. It started a few weeks ago in the shoulder. It found its way to the ankle. Physical therapy in between. Swim practice ends up being haphazard and inconsistent. My heart breaks. I am distracted. Most of the time.

But this afternoon, when we left school together, and there were 8 inches of snow on the ground where it hadn’t been a few hours earlier – no one we were about to meet would have had any real idea of what I wrote in the last 2 paragraphs.

After settling Meghan into the warming car I set about clearing it off. Its a decent car, but a sedan,not an SUV, and while it can handle 2 or 3 inches, it is NOT designed to drive in 8 inches of anything. I ended up on my bottom twice as I finally got the windows and roof clear enough to be safe and legal.

Then, I decided to pull out. Well I went through all the motions anyway. There was lots of spinning and not much moving.

Then there were people all around my car. Some I knew, others I don’t think I ever met. And for a moment getting my car out of the spot was the most important thing on their agenda. They guided me as I behaved like a ditsy distracted woman. They had no idea how full my head was, and they passed no judgement. They were patient. I got free.

I kept driving, ready to make the first right when a woman waved me away. Someone was stuck.

I proceeded straight slowly, and when I tried to move slightly to the left to be sure I cleared someone in the road, I quickly ended up on the curb.

Fortunately no cars were in the way. But I was not moving.

And then… there were people. New people. Surrounding my car. Strategizing. Thoughts of Thursdays appointment still waffling around in my head, I desperately tried to focus. They worked at it. I did as they said. And in a few moments, I was free again.

I kept to the main roads for as much of the rest of the trip as I could manage. And I was doing well until I had to stop to let a car pass at the service road. Stuck again. This time I had the wherewithal to free the car on my own. And as I turned down my block, there was a sense of relief.

So I pulled up alongside our other car to quickly shovel out the spot in front of our house. Then I got in the car to back it up. Spinning wheels. Sliding.

Then there was a neighbor. Then another. People I have lived near for 13 years, but I am embarrassed to say I formally met for the first time today.

This time the predicament was a bit more dicey. My new car was literally inches from the old one. A slide in the wrong direction was going to cost me the front corner panel of one, OR BOTH, of my cars.

Hesitant I called my parents house. I knew my Dad would make it down and help me make sense of it. I frantically shoveled until I could see the blacktop of the street, looking over my shoulder and holding my breath as a few cars sporadically made their way down the street. Our other neighbor, a former bus driver, came over and strategized a bit. Before I knew it the two of them were moving my Saturn out of the way. As my stepdad’s familiar smile greeted my from the window of his truck – my neighbors had safely parked both of my cars – without them ever touching!

Relieved. Grateful. Exhausted. I gleefully accepted my Dad’s news that he’d be using the snow blower on the back of our property and I busily got to work on the front. Street to street property is nice… most of the time.

Some time close to five – a few minutes before my husband got home, I walked my sore back into the house to greet the face of my wiped out “I’ve totally had it.” kid.

Close to two hours after I had left my job, I had to stop for a minute and reflect. The chaos of my mind was still swirling about my head.

I chatted with “The Captain” for about 15 minutes in awe of exactly how many angels had crossed my path today. By my count at least 15 people had in some way “paid it forward” to me and my girl.

And I work less than a mile from my house.

So what if every day was a snow day? Well we may have lots more chances to find out. But, more importantly, what if we TREATED each other, EVERY day, as if it was a snow day. What a wonderful world it would be.

50,000!

Published on November 22, 2013 by beatingcowdensLeave a comment

Unwinding from another wild week I checked in here to find that at some point very soon this “Beating Cowden’s” blog will clear 50,000 views. The number is almost incomprehensible to me. I am humbled by the support, and the ability to raise awareness of ours and other rare diseases.

This week Meghan endured ANOTHER MRI. This time her head was firmly fixed in a cage as she had her brain scanned on every level. while receiving 8ccs of the gadolinium contrast dye that I suspect has been helping cause the headaches to being with. Irony. Exasperation.

The bright spot came in the words, “There is no tumor. There is no AVM.”

Sweet relief and agonizing frustration simultaneously.

Grateful beyond measure that there is no need for brain surgery. Relieved to my core that there is no evidence of any suspicious mass or vascular malformation.

Distressed, worried, disturbed, and sad about the diagnosis of chronic migraines. Please spare me “It could be worse.” I know. So does she. But I have to tell you about 3 hours after starting a migraine I am done. She has been at it 2 months. She has not missed a day of school, managed an almost perfect report card, and made it to some swim practices. She just keeps plugging.

So, we doubled the medicine – striving for the day the pain scale hits 0 again, and hoping it’s soon.

Lots of kids without Cowden’s get migraines – but somehow as the detective in me uncovers her triggers I suspect they will be linked.

And one day soon she will feel strong enough to get back into the pool for swim practice. Her health has allowed her only about one practice every 2 weeks. Her goals are much higher. Patience.

Working on ways to safely rid her body of gadolinium and other toxins not proven to cause, but clearly not helping the headache situation. We will figure it out. The stakes are too high to give up.

The rest of the stuff. The worries that are just real life worries, and not Cowden’s worries at all. The ones I can’t blog about. They are the ones keeping my heart extra heavy.

Thanks for tagging along on our journey!

Give Thanks…

Published on November 19, 2013November 20, 2013 by beatingcowdens2 Comments

I like fall. I prefer the optimism and new beginnings that come with spring, but I do love fall. I like the sweatshirt jacket weather, and the pumpkins and apples, and the beautiful fall leaves. I like basking in the mystery and wonder of the beautiful colors as they fall through the branches to the ground, and blow through the air with the brisk wind. But, this year I almost missed it.

I sat on the steps Saturday as my husband frantically gathered leaves into bags so they could stop blowing all over our neighbors lawns. And, in our haste I almost didn’t notice, or even take a minute to appreciate the beauty of what was before us.

A testimony on life, and a sad one.

We, like so many others, are busy. We are painfully busy at points. There is school, and work, and homework. There are Physical Therapy appointments, and swim practices. There are lessons to plan. There is a house to maintain, laundry to do, dogs to clean, floors to wash, and marathon grocery shopping every few weeks to keep my allergy girl well-fed. There is mail to sort – regular junk to be shredded, bills to pay now and bills to pay later. And that’s just here.

There are family members grossly under-visited. There are people we love so much that live right close to us – who we never see. There are friends short distances away we haven’t seen in years.

And yet, usually we find a few minutes in the fall. A few minutes to toss some leaves around. A few minutes to giggle. So many thoughts flooded my mind as the last of the leaves hit the bag for this week. One more clean up and the trees will be bare for winter. And I looked up at that bright red tree above my doorway and took a minute to give thanks.

I needed to give thanks for the tree, above the new roof on the place we call our home. I needed to give thanks for my husband and the family and friends that helped it happen 13 years ago.

The fall leaves, like so many things that happen each year, are a beautiful reminder to give thanks – for beauty, for love, for hugs, for smiles…

Meghan got new glasses this week. She got her first pair in 2009, and her eyes have worsened steadily. As we picked them up, and she said, “WOW,” and “THANKS!” all at the same time – I was reminded of the little girl, who is now a young lady. I am struck by the genuine gratitude as her sight is restored. I am thankful for my vision, and the doctors who are able to help her have clear vision.

“Oh how the years go by…”

I have a friend or two who have given thanks every day this month, and I enjoy reading their thoughts and thankfulness each day.

For me I am thankful – but it’s more like a flow chart. One thing, one blessing, one bizarre set of circumstances leads to me being reminded of how many reasons I have to be thankful.

Tomorrow we go for that brain MRI. The one that will confirm that the suffering endured these last few months by my 10 year old who has seen so much, is “probably” migraines. Brain MRIs really suck. The only part to really be thankful for there is the part when they tell you they didn’t find anything.

These have been some difficult weeks. My heart is heavy, and worn. But I am thankful:

For my daughter, and her unfailing determined spirit.
For my husband, and his loving sense of humor, and his unending patience.
For my parents and grandparents, and the blessings of having them.
For my siblings, as we grow and experience life at different stages and paces.
For nephews of all ages and stages.
For my cousins and aunts and uncles all over the country – and for Facebook for helping me connect with so many.
For the friends who refuse to give up on me, even as I am not available – again. I take solace in knowing they will be there when I am.
For those I love who are sick in mind, body and spirit. Their strength inspires me.
For the doctors who care. Whether they get it right or wrong, my heart is open wide for the ones who care.
For Meghan’s teachers – past and present – school and church, and their ability to instill a love of learning.
For Internet friends – who support when other’s can’t.
For dogs, and their unending loyalty.
For two secure jobs in our home.
For giggling, and tickling and fake hand-made flowers.
For those of you who take the time to follow our journey.

I turned 40 last week and it wasn’t so bad. I am thinner and stronger, and more determined than I was in high school – albeit a lot more gray.

I guess that makes me thankful for hair dye.
And for boobs that don’t sag, and no need for a mammogram.
For size “small” – cause who knew people wear that?
For the Isagenix that taught me to eat nutrient rich food.
For the prayers of friends, and the strength and stamina to endure.

MRI tomorrow. Results to follow. Then, we will give thanks even for the torture of migraines, with the knowledge it beats the alternatives.

MOSTLY I AM THANKFUL FOR HOPE, as the Global Genes Project says – “It’s in our genes!”

Give Thanks!

Do penguins have knees?

Published on November 4, 2013November 4, 2013 by beatingcowdensLeave a comment

I can credit someone else’s Facebook post for even allowing that random wondering to slip into my head. But it has served as a distraction… so I am grateful.

It’s hard for me when I need to choose my words carefully. I usually just lay it all on the line and that’s how I keep it together. Except when your heart is heavy because of matters that just need to be private, that makes it extra hard. So that is why I haven’t been posting much. But without my writing the voices just stay in my head, and then…

But my heart is full for so many reasons, and some I can share with you. Blessed by my consenting 10 year old, as long as I don’t disclose anything embarrassing – to educate the world about “beatingcowdens.”

The headaches have been around on and off for a while. So long that I don’t actually remember. It sounds awful that I as a mom could say that, but it’s true.

I remember the pediatrician saying to me that I should take her to a neurologist because he kept hearing me mention headaches. I remember being overwhelmed by too many doctors. I remember last year blaming the prescription change on her glasses. I remember blaming chelation. I remember blaming allergies…

But the headache hasn’t quit. It’s been weeks now.

It varies with intensity. We are trying to get her to understand and use a pain scale to get some consistency.

But pain is such a personal thing. It’s just not easy. We can never exactly know the pain of another because every body perceives pain differently.

What I do know is that there has been a headache to some extent for over a month and that’s too long.

What pushed me into action was last Monday night. Homework was finished, and I was ready to bring her to swim practice- the place she loves more than anything. And she told me no.

She said she didn’t feel right. She said she wasn’t strong enough. So I let it go and kept her home. But THAT didn’t feel right to me.

Then there was the day that she was waiting in my classroom for the school day to start and she said, “There it is mom! Feel that pulsing?” As she put my hand on the side of her head I got queasy. We all have pulsing in our heads to some degree, but once you have dealt with a vascular malformation – or a few – the pulsing takes you to a new mind numbing level of anxiety.

And when the teacher gave her a shell and she held it to both ears, and said , “I can’t hear it the same in my left ear…” And then there is the ringing that comes and goes…

So tomorrow we head back to Manhattan to visit a neurologist. A little later than the pediatrician would have liked, but we are going. And with every deep fiber of my soul I hope with all my heart that he tells me my girl has the worst fall allergies in the world. And in a few weeks it will all be just perfect.

That’s the story that will get me through the night.

Superheroes…

Published on September 30, 2013September 30, 2013 by beatingcowdensLeave a comment

In honor of the last day of September – Childhood Cancer Awareness month, I am re blogging my own post from January of this year.

beatingcowdens

I saw superheroes today. Not the kind that normally come to mind.

The 9th floor of Memorial Sloan Kettering Cancer Center was absolutely crawling with them.

None of them had capes. And they weren’t any funny colors.

None of them could fly, and yet I am sure that’s what they were.

I saw young bald superheroes with smiles that could light any room.

I saw older, more mature superheroes, heroically managing their IV poles, after teaching a younger one not to cry.

I saw parent superheroes, who although their capes were invisible to the naked eye, possessed nerves of steel, and the ability to make their young one laugh even as they themselves were inches from despair.

I had a lot of time to watch them. We had a long wait this morning. And even as I kept Meghan distracted, my eyes never left them.

They navigated the floor like…

View original post 239 more words

Balance

Published on September 23, 2013 by beatingcowdens1 Comment

I am almost at the point where I have stopped waiting for the break. I am just about ready to stop wondering when there will be rest. I am almost ready – but not quite.

September as a teacher is a month full of new beginnings. One of the blessings of having a job that begins and ends each year is the “newness” that September brings with it. There is something special about meeting new students, or old friends after a summer vacation. There is something exciting about anxious eyes and new backpacks, and children eager to reconnect with friends.

So as I ran through September for about the 16th time, I took the time to appreciate the wonders and the smiles of the children around me- if only for a few fleeting moments. See, I remember September 16, and 15, and 14 years ago. I remember September when I was still a bit unsure of myself. I remember September before there was a husband, and a house, and a daughter, and 2 dogs, and 2 Cowden’s Syndrome diagnoses, and countless appointments, and surgeries, and medical bills, and paperwork at home to match the paperwork in school. I remember those early Septembers thinking I was overwhelmed. And, like so many things happen in life – looking back now I realize I had no idea.

This week we organized a new car, soon to be picked up. We got an antibiotic for the sore throat full of strep symptoms again. We got a new roof on the house. The new roof prompted a thorough cleaning of the entire second floor, which led to the Halloween decorations coming out a bit too early.

This weekend we packed up all of Meghan’s clothes – and I mean virtually all of them. We gave them to a beautiful family, and started over. She has grown this year several inches, has a foot as big as mine, and we will soon be sharing tops.

This weekend there were lessons to plan, IEPs to read, standards to sort through and a binder to prepare. I love my work, I really do. But the setup, and the stipulations placed on us from places way above us are exhausting in and of themselves.

This weekend there were bills to pay. A giant stack, somewhere in between a pile of mail that needed to be shredded and just to the right and a bit higher than the mountain of laundry in the middle of the basement floor.

Ok - so maybe not QUITE this bad.. — Ok – so maybe not QUITE this bad..

This weekend, in between cleaning and sorting, and laundry, and preparing food for the week, there was this headache. A nasty one that just wouldn’t quit. She started complaining Tuesday and it just persisted. And as life continued at its rapid pace, and constant motion, there was Meghan in bed for the better part of Saturday. No swim practice for her, always a gut wrenching decision, her body can not endure this pace of constant motion. And my heart, torn in two, kept a watchful eye on my girl as I continued the whirlwind.

I remember being her when I was younger. I remember watching my mom and sister in constant motion. I remember being sick the morning after a sleepover. I remember just not feeling well. But none of that, not any of it, makes me feel any better when it is my girl, sitting and hurting.

There is worry all around. I am aware of the friends and family struggling with illness of all types. I am aware of their angst and their hurt. And as much as I pray for peace for them, for their loved ones, for their healing I have to honestly say the biggest piece of my heart sits with my beautiful girl.

We help her rest. We feed her the most potent superfoods we can buy…

She is trapped in a schedule with no relief, in a body that sadly lacks stamina, with a syndrome that is angered by overwhelming fatigue. But what to give up? 5th grade promises to be fun, but busy. Then there is physical therapy – twice a week, and swim practice on the schedule 3 times a week. Plus doctors appointments, like the hand surgeon follow up in Manhattan on Thursday…

And while we work on her to keep her anxiety in check, there is always mine to look after. When you have a syndrome that grows tumors, nothing is ever without a high alert. A headache, probably allergies, but what if… The pain in the leg, probably a muscle pain, but what about the AVM… And if she could have an AVM in her knee, and her hand…

Life is about balance.

September is chaos. It just is.

But the nice thing about September is its followed by October.

And while I am not hopeful for huge amounts of downtime anywhere in the foreseeable future, I am confident we will sneak in some pumpkin and apple picking one day in the next few weeks.

And I am learning that while this Cowden’s Syndrome, and all its extra worry is going to linger forever, somehow, some way it seems to make the little moments that much better.

Maybe that’s where the balance comes in…

Worn

Published on September 1, 2013September 1, 2013 by beatingcowdens3 Comments

“Worn”

I’m tired

I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world

And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m wornI know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have leftLet me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn….

http://www.youtube.com/watch?v=zulKcYItKIA

This has been the summer that… well…

It has definitely been a few extra stressful weeks, and not at all the relaxation we had so desperately hoped for and needed in June.

But, like it or not time marches on, and here we are in the middle of Labor Day weekend.

When we started the summer my daughter had 2 basic requests.

1. Go to the beach.

2. Go to Philadelphia.

Not so hard right?

And then we looked at the calendar about to change to September and realized between appointments, procedures, tests and surgery – we never got either one done.

Stress is very individual in how it affects each of us. We all have stress. We all deal with it differently. But I think that the reality that stress can, and does manifest in real physical illness is often lost on us. Especially lost is the harsh reality that stress can make our CHILDREN sick – until it smacks you in the face.

It became clear this week that the stress is weighing heavily on Meghan. She is one tough chick, but there is only so much the mind and body of a really cute, smart, well behaved 10-year-old should have to endure. It is now the top priority of her father and I to actively work on lowering her stress level.

We started today.

Months ago we purchased tickets to see the Contemporary Christian band, “Tenth Avenue North” in concert in Ocean Grove New Jersey on August 31st. We decided to make a day out of it – or a half day at least!

We let Meghan sleep as late as her body needed. (Falling asleep has become terribly hard again.) Then she got to watch some TV. I ran a few errands, and around 3 with a cooler full of cold cuts for “dinner” we set out to surprise her with a trip to the beach.

We never told Meghan our plan, although it was obvious she was secretly hoping for the beach. We just know too many factors can get in the way on a moment’s notice. So, it wasn’t until we were looking for parking that we even told her.

By then it was 4:15. The perfect time to take a kid who is not really sure she likes the beach, to the beach.

Crowds were waning, and as we set up our blanket she had some time to adjust to the seagulls, and the sand between her toes.

Forever my texture phobic kid, truth be told the sand in the toes was the reason I stopped really bringing her to the beach years ago. But today there was a mission to put her toes in the water and collect shells with Mom and Dad.

She walked with Mom. Then she walked with Dad. And for a few glorious minutes I laid my head on the towel and remembered my childhood days in Ocean City,NJ. I listened to the waves, felt the sand between my toes, and felt such PEACE!

Don't hate my polka dots - my husband did them for me! :-) — Don’t hate my polka dots – my husband did them for me! 🙂

We have a small bag with some beautiful shells.

We even played some with her Nerf frisbee. There was laughing, and smiling, and a good deal of stating and restating that the sand on her toes does NOT feel nice.

With some gentle prodding she came around, but was perfectly happy with 2 cool hours on the beach. So glad I didn’t get a full day plan in place!

What we did NOT do was have a picnic lunch on the beach as planned. Instead, we ate in the car. Sea gulls, being nothing more than glorified pigeons would have undoubtedly created significant reflux for my girl. So, we had Board Head chicken breast in the car, with potato chips, and had a great conversation – minus the sea gulls.

We walked the streets of Ocean Grove for a bit, and I saw the sign:

And somehow I knew we had done things right – today.

We headed over to the Great Auditorium for the concert. We happily bought our girl her first concert T-shirt, and her “Tenth Avenue North” Bracelet. In-scripted inside the bracelet are words from the cover song off their newest CD, “The Struggle.” It reads, “We are free to struggle, but we’re not struggling to be free.” She is sleeping with it on right now.

The show was amazing. Meghan was enthralled. They are quite the performers.

Meghan and I often sing along to their songs on the radio. Our favorites are “Worn,” and “Healing Begins”

“Healing Begins”

So you thought you had to keep this up
All the work that you do
So we think that you’re good
And you can’t believe it’s not enough
All the walls you built up
Are just glass on the outside

So let ’em fall down
There’s freedom waiting in the sound
When you let your walls fall to the ground
We’re here now

This is where the healing begins, oh
This is where the healing starts
When you come to where you’re broken within
The light meets the dark
The light meets the dark…

http://www.youtube.com/watch?v=Qe1yKciSlT4

The lead singer also spent some time talking to the audience about God’s plans. He told the story of a car accident his Senior year of High School where everyone thought he would die, and no one thought he would recover fully.

That 32-year-old man with a wife and 2 daughters spoke definitively tonight about believing God will use the adversity to grow greater things. He told us he touched a guitar for the first time at 18 while he was waiting to heal from his accident. Clearly, God had a plan.

I was touched by the story, but more moved by Meghan’s reaction. She HUNG on his every word. She was thinking – deeply.

Then she asked if I had any of the “Cowden’s cards.” And, God bless this girl she walked right up to the stage and handed them to one of the back up band members… alone.

“I just thought they should have them Mom, in case they want to read…”

You know the irony with this darned Cowden’s syndrome is that what you NEED is to be away from doctors, because they cause STRESS which prompts other conditions that cause you to NEED doctors.

So, a few days after the hand became free, we are on the hunt for the solution to more developing problems.

Stress. We do what we can to deal.

We use music. We enjoy time together.

We try harder to get it right. We hug each other. We hold each other.

I still haven’t given up on a road trip to Philly. (If only I can get my navigation system to work…)

That Voice

Published on August 11, 2013August 11, 2013 by beatingcowdens4 Comments

That voice. The one we all have. The one my friend whose post I “reblogged” wrote about yesterday,

I have been battling mine. Sometimes I win. Sometimes I don’t. But, I am actively working on increasing my stats.

Chronic illness is, well, chronic. It sticks around even when you’d like to toss it to the curb.

Yet I, as so many other parents, have found an inner strength that comes with managing your child’s chronic illness.

And somewhere after you have been battling for a bit, and your mother’s intuition is fully fine-tuned, and stronger than any fictitious “super power,” you realize it gets easier and easier to take that voice of self doubt and tell it to SHUT UP!

Just this last year alone, as I have adjusted to my new body parts, and my missing body parts, I have come to the determination that despite my gnarled mess if varicose veins- I CAN wear shorts, because – why not?

And I CAN talk to whomever I want about the Isagenix business I am working to grow, because I believe in the products, and they have changed my family for the better. So, why not?

And I CAN blog in intricate detail the stories of our battles with Cowden’s Syndrome, so that those in similar situations have a story to relate to- and others will help us raise awareness.

I am able to stifle that voice when I meet another new, clueless doctor. I am able to educate them, or fire them. Whichever is best. I am able to plow through obstacles wretchedly placed in our paths for the best care my girl deserves.

Yet, there are still times that voice, and all of its horrible, scary, evil “what ifs?” Whispers – no SHOUTS in my ear.

We are still in Disney. I am alone by the pool. I have been here for hours- not without a cocktail in hand. But I am separated from my family because my girl is exhausted.

It’s Florida. It’s August. It’s hot. And maybe it’s just that simple.

But we’ve done this before. This is our sixth time. And this time the stamina is struggling. Late mornings. Early nights. Droopy eyes. And I worry.

We give her the best, cleanest, purest food and vitamins we can find. She sees doctors all over- all the time.

And yet, “Mom I just don’t feel right.”

My heart sinks.

I brought her cookies tonight- a trip to Downtown Disney alone because she just “couldn’t.” The gratitude in her eyes worth every one of my extra steps.

There is no fever. Maybe her Dad is right. Maybe I worry too much.

But we have only seen one night show- unheard of for us. I am starting to wonder what will happen when school meets PT and swim practice!

Or, maybe I remember too much. Or maybe I know her too well.

Motherhood carries inherent risks- among them constant worry. So Cowden’s or not- I am confident I am not alone in my anxiety.

We want what’s best for them. We want to help them. They are our lives, our air, our breath.

I have got that voice in much better control than ever before. On this though, I am not alone in wondering if I will ever get it to SHUT UP!?

May All of this Princess’s Wishes Come True

Published on August 10, 2013August 10, 2013 by beatingcowdens3 Comments

As I rest my head tonight I hear the slow restful breathing of my husband and my beautiful 10 year old. Today we swam. Today we had her hair done at the boutique. Today we wore fancy dresses. Today we laughed and hugged and lived. Today was not about challenges that lie imminent. Today was about laughing. Today was about magic. Today was about Meghan. So when the woman waved her “pixie dust” I will confess to fighting back tears. “Bippidi Boppidi Boo! May all of this princess’s wishes come true!” Something so silly – yet with ridiculous deep meaning to us. Love my princess!