beatingcowdens

It Never Gets Easier

Published on August 20, 2013August 20, 2013 by beatingcowdens8 Comments

They say “practice makes perfect.”

I disagree.

No matter how many times we practice this scenario, for surgery, for biopsies, for tests- it is no easier now than it was the very first time.

And boy have we had practice!

This morning, as Daddy walked with her to the operating room,(our routine firmly in place – Daddy does the OR and Mommy does any overnight stays) I was still struck with the distinct feeling that I had been kicked in the stomach with a large pair of steel tipped boots.

This one should be ok. 9 days wrapped and dry. Stitches removed, and we should see progress.

As long as…

Well now we fidget and pray and keep busy. There will be time for the rest.

Raising Awareness – One Card at a Time

Published on August 16, 2013August 16, 2013 by beatingcowdens6 Comments

I am going to brag.

Brace yourself. It might be a long one.

A short time before we headed to Disney, I wrote about taking out Meghan’s push chair for an appointment in Manhattan. She was terribly bothered by the rude stares that greeted us that day.

As a result we talked, a lot. And, like she always does – she comes through those conversations blowing my mind with her introspective maturity.

Don’t misunderstand me. I sometimes worry that my 10 year old is such a deep thinker. I am acutely aware that she has way more on her plate than she should, and she handles with grace and poise a life that would leave many adults weeping under their covers. I wish she told me everything. I know she doesn’t. My heart often breaks for the burdens she carries.

Yet, she is just so amazing.

After we spoke about the rude “starers” she talked about wanting to have a way to let them know about Cowden’s Syndrome. She wanted to raise awareness.

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.

So she gave her ideas to Daddy and he created this card. We used the logo from the “Global Genes Project,” an organization that has been dear to Meghan since her diagnosis. http://globalgenes.org/

Meghan wears proudly the denim ribbon created for her by a family friend when she expressed a desire to have a ribbon. something she could wear that would represent her.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!" — A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

She dreams of one day seeing another child wearing this symbol. She wants it to become as common as the “pink ribbon.” Because, there are about 7,000 rare diseases, and 1 in every 10 people is affected by one. Many of these diseases are genetic. As we learn more about other rare diseases, Meghan understands the need for the rare disease community to unite. So little research is done on so many of these diseases that they remain poorly understood and under funded.

As we packed for the trip – Meghan asked if we could print some of the business cards for her to bring to Disney. She wanted to be able to hand them out. She knew people from all over the world visit Disney, so it would be a great place to spread the word. 500 cards later, I made sure she had all the tools she needed.

What happened next was just another example of how easy it is to be proud to be her mother.

Meghan decided that instead of getting an autograph book this year, she would take pictures with the Disney characters with her cards.

She also spontaneously struck up conversations with complete strangers all over the parks. She would approach cast members, wait staff, photographers, and guests. She spoke to people from the US and well beyond.

And every time she spoke my heart smiled.

She is an incredibly articulate young lady. She explained Cowden’s Syndrome through the eyes of a ten year old to almost 200 people.

Some of the most memorable included a man and his wife and their service dog on the bus to Downtown Disney, and a helpful cast member from Puerto Rico outside the fitting room as she tried on her Merida dress, and a Disney Photopass photographer whose genuine hug was so heartwarming.

Those were just a few. She spoke to so many people over the course of our 9 day trip that I have no doubt there is a greater awareness of Cowden’s Syndrome in the world than there was just 2 weeks ago.

She will tell you she is not a public speaker.

She might even try to tell you she is shy.

I will tell you she is flat out amazing, and that she is ~~going to do~~ already doing great things.

This child will make the world more aware – one card, and one conversation at a time.

These are Just a few who learned something new this week!

lori (14)

Believe in the Magic

Published on August 14, 2013August 14, 2013 by beatingcowdens6 Comments

This has been quite a year, for our whole family- but if I am honest, especially Meghan.

This year in January we had the “Santa Claus” chat. And, as careful as I was – I was devastated when some of the magic left her that day.

During this last year, she lost my grandfather, her GGPa. and had her first close encounter with deep loss. Last October when GiGi fell she saw a fragile side of two of the strongest people in her life. She has watched Grandma- my Mom – look after HER Mom, and she thinks- and she worries. Then just a few short weeks ago GGMa had heart surgery. And we have had so many discussions about life these weeks, your head would spin, and your ears might bleed.

That doesn’t even bring into question her own medical issues. This child spent just about every single day- from the day school let out- at a medical appointment. Many if them were routine follow ups. Many others addressed new problems and concerns and left us with more unanswered questions. And all of this – that began literally the day after school ended, will culminate August 20th with hand surgery. This has been the summer.. Well…

So she has been preparing her answers when people ask her how her summer was. Before we even left for Disney she had decided she would tell them; “I love my new swim team, and Disney was great!”

She is smart enough to know most people will not REALLY want to hear what e transpired this summer, and she hates to lie- so we found a happy medium!

That’s because Disney always has been great. But the first few days this year were a little rough. She was struggling, and when we finally got her to talk she explained that she hoped the trip would erase a horrendous July. It didn’t. She was literally expecting the “Magic” to whisk it away.

Then there was that problem with the “magic.”

See for the first time – with the realization that Santa wasn’t who she expected- came the realization that, well, Mickey, and Goofy, and Donald- well you get the idea.

Maybe its fortunate she was too exhausted too much during this trip, so we had lots of time to talk. And, somewhere around the third day she caught on.

That MAGIC- it’s yours. Inside. No one can take it. Sickness, sadness, illness, doctors, surgeries, Cowdens syndrome- nothing!

The magic is there for you if only you believe. THAT is the wonder of Disney. THAT is what keeps us coming back.

The 2013 theme is “Believe in the Magic.”

She gets it. We all do. You have to believe…

Much more about this trip when I am back on my real computer!

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!?

Sometimes When You Lose You Win

Published on August 10, 2013 by beatingcowdensLeave a comment

While we are on vacation- my friend started her own blog. She’s not a Cowden’s survivor, but a survivor of LIFE, and its many twists and turns. I have a good feeling this will be worth your time!

When You Lose You Win

Sometimes when you lose you win. ~ What Dreams May Come

I have always wanted to write a blog. I think about doing it all the time. I’ve been struggling to find the perfect subject. The conversation (with myself) goes something like this:

Maybe I’ll blog about teaching. No. Maybe infant loss? No. Hmm… Ok maybe motherhood? Nope. Health and wellness?? Maybe…

I struggle with this all the time. But that isn’t what stops me from writing. It’s that familiar voice inside my head that says the words that I don’t want to hear:

No one cares what you have to say… about ANYTHING!

So I do what most of us do. I listen. I put the idea of blogging out of my head and move on to something safe. Something in my comfort zone. Something that doesn’t involve risk. Until this week. This week something shifted inside…

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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!

Manatees, cell phones, and hidden blessings

Published on August 8, 2013August 9, 2013 by beatingcowdens2 Comments

There was a moment yesterday when I thought seriously about dropping my cell phone into the tank with the Manatees and walking away. It had rung twice in the last 30 minutes. The first brought news that my husband (yes, the not PTEN affected one) needed to go back in for further testing of some skin issues. The second call was to put the car claim on hold. They won’t arbitrate until the field tech services the car. I do hope he brings his magic wand. This was supposed to be vacation. And a respite from the cares and worries I had left miles behind. My mother graciously agreed- again, to live at my house and care for my dogs, even though she is in dire need of a rest herself. As I felt my blood pressure escalate, I held on to my phone. I thought slowly and deeply. I turned the phone off and tossed it in my bag. We had waited too long for this… This morning I woke up early all by myself. I rode to the Magic Kingdom alone. I spdone some time readjusting my head. I rode Space Mountain alone. Haven’t been near that ride since 2000. But heck, if I can Beat Cowdens- I can do anything. So I did. And the day continued just fine as we prepared for the anxiously anticipated archery lesson. There were times when things really stunk over the last few weeks, we would talk about this archery lesson. And then, as it will often do in Florida in August- it rained. It was one of those bone soaking thunder and lightning storms that come out of nowhere at exactly the wrong time. And just like that archery was cancelled. Quite aware that I am supposed to be the grown up in such things- I did the mature thing. I cried. Tears if frustration for weather out of our control. For circumstances that couldn’t be changes, and for yet another disappointment for a child who has had way more than her fair share. But, as God so frequentdie does, He heard my desperation. Something that could seem so silly if you didn’t know the back story- yet another blow to our shaken cores. And then. The supervisor, and one if the instructors, pulled us into a back room and for 30 minutes gave Meghsn a 1:1 lesson of the basics of archery. She held the bow- just never shot it. And, maybe with that soft tissue tumor it was for the best. Grateful we headed back to meet my very dear childhood friend and her family for dinner. The conversation was light. Relaxed and fun. The kids were excellent, and we ended the night at the Main Street Electrical parade. Blessings abundant. Maybe we will appreciate them even more because we have to look extra to find them. Yet- they are always there. I decided to keep my cell phone. But now I turn it off for large parts of the day. I figure the manatees wouldn’t like Candy Crush anyway.

Rare. Invisible. Real.

Published on August 5, 2013 by beatingcowdens4 Comments

Those are the words that come to mind every time someone asks me to describe Cowden’s Syndrome.

Most people, even most doctors, understandably, have never heard of it before.

With an occurrence of 1 in 200,000 that is not a surprise.

There is always hope... — There is always hope…

What is a surprise is on days like today, where the sun shines a bit brighter. The traffic is a little lighter. Daddy is home on vacation. And, we met a doctor who had heard of Cowden’s, understands it, and is compassionate, likable, and easy to talk to. Yep, imagine that? A POSITIVE experience!! 🙂

We saw an NYU affiliated hand surgeon today. I am sure God heard the chorus of prayers storming Heaven for an answer for this kid, and today He delivered.

We were early for our appointment and waited in an uncrowded waiting room, while a pleasant receptionist organized the paperwork.

We were taken promptly at our scheduled time. We met with a friendly, competent PA. She had the hands Xrayed. The doctor was in the room 10 minutes later and immediately had Meghan on his side when he started to talk about two of her favorite things – Disney and swimming.

He examined her hand. He easily recognized the soft tissue tumor that is typical in Cowden’s Syndrome. He told her stories of another young boy he treats with a rare disease who grows bone instead of tissue. He validated her. He was confident. He drew a picture, and explained why that tumor was causing pain.

With every word he spoke her smile grew. The hope went back into her eyes. She waited anxiously for him to tell her he was going to take it out.

She almost leaped up and cheered.

August 20th in the early morning hours. my then 10 year old will prepare for her 10th surgery.

That’s how you know a kid is at her wits end. When surgery is an exciting option.

He told her it wasn’t going to be better right away. He asked if the PT from the letter we showed him (you know – the PT who had it right ALL ALONG! 🙂 could rehab her hand. I told him I was quite sure she could, but I would ask. (Actually – I have no DOUBT she can do anything. Dr. Jill NEVER gives up on Meghan!)

He said the pain may be worse for a bit after he “messes around” in there, but that gradually she will feel the pain lift and the range of motion return. I wanted to hug him.

All it takes is someone who “Gets it.”

We all want to be validated. As adults we often struggle to have our concerns made valid by those we love. When you have a rare disease, where the symptoms are often invisible, you struggle to be taken seriously. People are quick to pass judgement.

She looks fine, why can’t she walk? She must be lazy.

She is complaining again? Attention seeking,

So when you are just trying to have your voice heard, at the same time that you are trying to find your voice -life can feel extra challenging.

Cowden’s Syndrome is a struggle. We are buoyed by the fact that we have each other. I have Meghan as my inspiration, and she has me as her advocate.

I will NEVER give up. She will continue to get the care she needs. She will continue to see doctors who validate her. She will continue to inform an under informed public with her “cards.”

She is my heart and soul, my sunshine. She deserves nothing less.

We can’t change the “Rare.” The “Invisible” or the “Real.” But we can open the eyes and hearts and minds of more and more people every day. Ours is one of so many other Rare Diseases. We are grateful. We are blessed. Even through our pain we have gratitude for our blessings. And we will move forward with our mission of awareness.

Extra Parts

Published on August 4, 2013 by beatingcowdens2 Comments

We got the car back – with a few extra parts.

And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!

The car isn’t fixed.

We had to take it back to wait for the “Field Tech” to have a look.

Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.

10 days in service and I left with the same broken car, with the same parts as when I dropped it off.

Except that a few “extra” parts were left on my seat and my console.

While we will make an appointment some time next week to leave the car for the “Field Tech,” I had to laugh in spite of myself at the irony of the whole thing.

We have spent the summer at doctors. Some doctors were routine, some were tests and follow ups for things that were not “ok.” While there are many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.

A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.

Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.

Too hopeful? Maybe. But, if I give up hope, where will we end up?

Raw with fatigue. Frustrated by “extra parts” and the people who don’t seem to know what to do with them…

Which ones do we put in? Which ones do we take out?

The similarities are almost uncanny. What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”

“Donkey Butts!”

Published on August 2, 2013 by beatingcowdens3 Comments

I could barely contain my laughter, but by then we needed a good laugh.

We had just left the hand surgeon. The one who was hopefully going to have an answer, and get Meghan some relief from the persistent pain in her hand and wrist.

I came as usual, armed with a thick heavy binder, a recent MRI CD and reports, a list of all current doctors.

I think I knew we were in trouble when he didn’t seem to see the small mass at the base of her middle finger. You know, the one she says helps alleviate the pain when she presses on it?

He said it was “barely there.” Yes, and 2 weeks ago it wasn’t there at all.

He took an Xray. Obviously low radiation, (I hope) because no one left the room.

The bone structure is fine.

Shocker!

And he repeated to me that the MRI was fine. (YEP, I know.)

Then he asked if she had a rheumatologist.

Yep, she told me to go see a hand surgeon.

And he asked me to explain Cowden’s Syndrome.

But, at least he, 40 years older than the other doctor, had the decency to take out his iphone5 and google it.

I gave the beautifully written letter from our PT. It explained everything so clearly.

Pause… Pause… Obvious think time for the doctor.

“I don’t know what to tell you.”

EXCUSE ME?

” I am sorry I wasted your time.”

That was it. No request that we come back. No suggestion on what to do next. Pay the Copay (AGAIN!) and leave.

So when we got to the car Meghan and I were both agitated. Rightfully so. She is so frustrated. 8 weeks plus, and she doesn’t have the range of motion in her wrist. She was so angry. How is it that these medical professionals keep turning her away with no answers and still in pain?

I told her she was entitled to a fit. She is above that. She got angry for a bit, then frustrated. But I have definitely had many worse fits this summer alone.

Then, she said, “You know what Mom? They are all Donkey Butts! All these doctors that can’t fix anything, and keep wasting our time and your money- that’s what they are- DONKEY BUTTS!”

I spend a good deal of time working with her on appropriate language for a lady. But I almost had to pull over in hysterics from laughing so hard. I think she nailed it – politely and accurately.

Round three Monday 10 AM in Manhattan.