That Voice

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!?

Extra Parts

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

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.

extra parts2

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.

hand 2

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?”

 

But wait, there’s more!

but-wait-logo

 

Sorry if I got you too excited with the title.  It’s really nothing too thrilling.  It’s just – there’s more.  There is always more.

I held the phone all day in hopes I would get the promised call from the rheumatologist today.  Really I should know better.  At this point I just want to know if I can raise this child’s medication.  But, we will add that to the list of conversations for tomorrow.

Tomorrow – happening in just a few minutes.  My how time does fly.  And my fellow insomniacs, all with minds and hearts as full as mine will appreciate the fact that we laughed today.  We actually had a case of the giggles.

It started when I called about the car.  The poor, fairly new car at the “Car Doctor” continues to get worse news as the days go on.

CarDoctor

 

Today’s report was that they are “at a standstill.”

WHAT?  A work stoppage on my 7 month old car??  REALLY?

But they have to wait for authorization before they can ORDER any more parts.

AND, they are waiting for a “Field Mechanic” to come take a look.

How this happens to a car that 7 days ago the entire shop was swearing to me was just fine is amazing,

At least they are on the same page as I am now.

Meghan and I HATE the rental.  It smells, It shakes.  It’s dusty.

But we laughed at the fact that the mechanics can’t seem to fix the car any better than the doctors can fix her.

Funny what can make us laugh.

We know each other really well Meghan and I.  We are very “in tune” so to speak.  I guess it’s a product of being together so often in so many precarious situations.

So as we walked up to swim practice again tonight she complained of pain in her neck.  That was weird.

I touched it – checking for lymph nodes.  Nothing obvious.

She swam the first 50 yards and looked weak.  The coach motioned for me to come to the deck.

She told me Meghan said her throat was scratchy and dry and she was having trouble breathing.

Meghan told me she was GOING TO finish practice and she was FINE because she LIKES practice.

I stepped back from that level of determination.  The coach agreed to let her swim if I was close by and we both watched.

She swam until 6:05 after taking 1st place in her 50 free heat during the mock race at practice (and knocking off about 8 seconds from her time a few months ago) the coach told her to go.

Only ten minutes left in practice anyway, reluctantly she agreed.

speeding train

 

And I can swear to you as we walked up the steps to exit the pool that is where the speeding train plowed right through her.

That was it.  She was talking and then all of a sudden she was telling me she was swallowing nails.  She was pale.

It happens that fast.  This isn’t so much the Cowden’s but the weak immune system.  The IgG subclass deficiencies, the missing mannose binding lectin.  From winning her heat, to flat on her butt.  That fast.

So we drove home and she showered.  We talked about the pros and cons of urgi care at dinner.  We had the conversation more for something to talk about.  We all knew she had to go.

hello-again

 

So we even have a “regular” doctor at the urgi care, who knows enough history not to badger us with silly questions.  He dove right in for the strep test.  He dug into her throat and patiently watched for that second line to appear.  And finally – close to the 5 minute time frame, he walked over and said to me “here it is.”  Faint as anything, but it was there.

“Smart Mom, by tomorrow she would have been a mess.”

I know.  I know,  It’s that fast and that hard.  If I wait –  it gets ugly.

strep

 

That’s the scoop on Strep Throat – from a family that has seen a lot of it.   We thought we were rid of it when the tonsils left.

We forgot that Cowden’s patients can regrow their tonsils.  So the tonsil tags forming again in the back of her throat are little disease mongers.

The first dose of antibiotic went in around 10.  The second one will be tomorrow morning.

Tomorrow she was supposed to be at Bible School.  Tomorrow she will accompany me in the rental to Manhattan again for my follow-up with the breast surgeon.

I hope its quick.

She has PT at 1, and the orthopedist at 2:30.

No rest for the weary.  Have to check on that hand.

patience-buddha1-300x248

 

Tick Tock

wagner-college

I actually watched it happen.  We were walking up the hill to swim practice last night.  Then she was limping.

She handed me her bag – struggling to balance.  Before I could ask what had happened…

“My hip, my groin, the whole thing!”  Gesturing near her hip bone and down her outer thigh.

I looked for a bench but there was none.  She wasn’t interested anyway.

“We can’t sit – I will be late for practice!”  Exasperated that I would even think she should stop walking while writhing in pain.

“Um, Meg – I was thinking you shouldn’t go to practice.”

“No way!  We are here.  I am going, and besides- the only time I feel close to normal, like everyone else – is in the water.”

almost_normal_01

We took away soccer.

We took away dance.

We can’t take away swimming.

Spring 2013
Spring 2013

So I made sure she asked her coach to help her stretch the hip.  She stopped only once during the hour and fifteen minutes.  I am sure I could not have kept up.

As I walked, and she limped back to the car she said it was, “not so bad.”  And, she was “glad” she practiced.

Dedication.  Admirable.  Torture.

After the shower it all fell apart quickly.  She froze almost completely. We rubbed it, and elevated it.  Within an hour she needed help walking.

She got settled into our bed and tried to rub her hip.

The yelp indicated the pain on her hand and wrist has not subsided either.

As we got her comfortable I thought forward, about the week to come.

I emailed her genetecist and her oncologist this week.  I attached photos of her hand.  I attached the copies of the MRI report.  They responded inside of a few hours.

Biopsy those lesions.  On this they agreed.  Cowden’s Syndrome -PTEN Hamartoma Tumor Syndrome.  Soft tissue tumors are common.  The oncologist reminded me only one lesion was visible during her exam just 2 weeks ago.

I know.  I watched the other one pop out as she cried out in pain during a shopping trip to Kohl’s.  It wasn’t there.  Then it was.  Now it is.  And it hurts too.

Tuesday we will see an orthopedist.  Thursday we will see a hand surgeon.  Two more doctors we didn’t plan for.  Two more afternoons lost waiting.  Two more opinions to contend with.

surgeon5bl8

And the prevailing uncertainty that anyone will ever fix the problem.

She is walking a bit better tonight.  That is encouraging.  A nice afternoon with a friend.  Conversation for me was easy and comfortable.  Grown up talk – something I have craved, while the children swam in the pool.  Almost normal for a few hours there.  Almost.

The car is going to stay in the “car doctor” over the weekend.  Apparently its condition has been downgraded.

Paperwork to begin a complaint with Better Business Bureau should arrive early next week.

Maybe I should give the CAR an ISAGENIX shake or meal bar.  It might be more productive than what is being done to it.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

Monday we should know more.

Monday we should also hear from the rheumatologist about her thoughts on the MRI.

Sandwiched in between concerns about family and friends alike.  In some ways our lives are miles different.  In more ways – they are exactly alike.

Patience.  Worry.  Anxiety.

Tick Tock, Tick Tock… that would be the sound of summer passing us by….

run-clock

Normal?

frustration.jpg.scaled1000

 

Really?

Normal.

That’s it?

Normal MRI.

Three hours, two different magnets, three doses of contrast dye.

Six days of agonizing waiting.

The vascular surgeon called this morning.

questions

I want to be happy.

I want to be relived.

I want to be sure I believe he pored over the images on the disk and didn’t just read the report.

Unfortunately I can not be happy, or relieved, because there is pain.  Lots of pain.

When I told Meghan about the conversation she got angry.

I cried.

I don’t know how to help  her except to keep pressing and pressing for answers.

At least she knows I believe her.  I suppose that’s more than some kids in her boat have.

But still its hard.

There is no diagnosis.

There is pain.

She has work to do.

Writing is agonizing.

Swim practice certainly doesn’t help.

What do you do?

charliebrown-football

I can’t take away everything she loves.

I can’t absolve her of responsibilities – even when I know they cause pain.

I called the rheumatologist.  For a small fee I sent her the CD too.  It’s only money.

Maybe she will look harder.

I feel like I have been beaten up.

I spent the afternoon writing a letter to the corporate office about chronic inconvenient car problems.

Really I am tired of all this fighting.

Can’t we all just get along and do the right thing?

No words of wisdom today.  Today we do it Dory’s way…

keep swimming

Forever- it’s all about perspective!

Even new beginnings start to become normal occurrences, and things begin to wind their way into the much anticipated summer vacation.  New beginnings can’t stay new forever, and as the school year comes to a close we have spent some time reflecting on the twists and turns that caused it to end much differently than it began.

Schoolbooks

Meghan finished fourth grade with her normal grace and poise – and I am sure good grades. (Report cards are given tomorrow.)  Although she finished the year alongside different students, and in a different building then when she began, she finished with the same bright smile and cheery, friendly personality, that quickly endeared her to the young and old in her new environment.

There are some people she misses from her old school.  There are some people I miss.  There are circumstances neither of us miss at all.

This wasn’t the plan.  But really, as I keep learning – we don’t actually get to plan everything.

Learning experiences.   That’s what they are.

positive attitude

You never really know what tomorrow will bring.

Make the most of what you have where you are.

Trust your heart and your gut.  If it feels broken, it probably is.

Reduce your stress.  Eliminate toxins.  Its good for the body, mind and soul.

let go of the toxic

No experience is wasted.  No interaction is a loss.  People come in and out of our lives, some for a season, some for longer – but always for a reason.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

And now there is summer.

Finally, not a summer of overwhelming homework, but not a summer of fun-filled camp days either.

Thursday we visit Sloan Kettering again.  Time for the thyroid sonogram.  How could six months go so fast?  And as the appointment closes in she starts to articulate her fears.  They are the same as mine.  I should know that she is smart enough to process.  To understand that they are looking for thyroid cancer.

On Friday we see the vascular surgeon for a follow up, and then a genetics follow up.  Meghan loves to visit the geneticist.  She says, quite correctly, that he saved both of our lives.  I remind her that she saved mine.  She smiles, and hugs me, even as she says quite matter- of -factly, “well when I get breast cancer – at least I know they will catch it early.”  Ever wonder what it feels like to be sat on by the ‘elephant in the room?’  Well, as I gasp for breath – speechless, I give her a hug.  No empty promises to offer.  I can’t.  I won’t.  She would see right through them anyway.

This is our life.  This is how our summer begins, and between the two of us, it doesn’t really let up.  There is little time for camp, or beaches.  We will sneak in a few play dates.  We will get away for a few days in August.  She will read a few great books.  We will spend a lot of time on the expressway, or the bridge, or in waiting rooms all over Manhattan.

This – this is why we need a life free of toxins.

This is why we eliminate unnecessary stress.

Cowden’s Syndrome carries enough stress of its own.

Persistence Dog

You see this will be our life – forever.  And the sooner we adjust, and find the balance, the sooner we learn to roll with the reality – the better off we will be.

Forever.

Forever is a long crazy concept.  Forever – while trying not to plan too much.  Forever.

Forever has this awful way of disappearing sometimes.

I used to think Pop’s vegetable garden would be around forever.

GiGi and Pop
GiGi and Pop

Well, actually I guess it is.  I just grow it for him at my house now.

Forever.  It’s all about perspective.

character

My Young Teacher

As I was getting ready to say goodnight to Meghan a few days ago, she was visibly upset.

During our conversation I learned that she felt the cleaner I had just given her for her face had made the small bumps she has (courtesy of Cowden’s Syndrome) more noticeable than before.

I didn’t see it.

I look and I see my beautiful daughter – radiant inside and out.

God's got this

Cowden’s affects the skin, and sometimes we get these obnoxious small bumps in all places you would never want them.   Dermatologists with little experience with the syndrome don’t recognize that each one is in fact a tiny benign tumor,  in the hair follicle, causing inflammation.

She is almost 10.  She is 5 feet tall.  She has fantastic hair and a great attitude about life.  But, like any girl in this society she gets self conscious about her appearance at times.

So, in my effort to reassure her that her “bumps” were most noticeable to her, I showed her my legs.

Both legs are riddled with bulging, pulsating, colorful varicose veins.  I have had 7 surgeries to keep them under control and eliminate the pain that goes along with them.  I have over the last 2 years lost about 35 pounds.  They just don’t let up.

rare mom and meg

I told her how self conscious I am about my legs.  I told her how hard it is to wear a bathing suit, or shorts.  I told her that  I have only bought my first shorts in over 10 years in the last 2.

I know now what I didn’t know then – that these relentless varicose veins are likely a credit to my Cowden’s Syndrome, and the same path that led Meghan to that pesky AVM in her knee – a generation earlier presents as these veins in me.

She looked at me, pointing out my own insecurities, and she said Mom, you have to understand – it looks worse to you.  And you have to remember, “Some people only wish they had legs… or legs that work.”

And there it was.  My girl again.

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears…” – Laura Story

hope its in our genes

We took the iPad.  We looked at pictures of veins.  We looked at pictures of acne.  We looked in the mirror.  We hugged.

Sometimes its so hard.  One battle after another on this journey.

I don’t know that I could handle anything so gracefully without my young teacher.

Mother, Wife, Teacher, Advocate

First I was a daughter.  A sometimes mousy, sometimes mouthy daughter.  I was respectful, but hated to be stepped on.  I wrote letters to the editor when I was annoyed.  I let people know how I felt.

Then I was a teenager.  I was full of opinions and was quite sure they were all right.  I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.

hand ove rmouth

I spent 4 years away at college.  Even though I didn’t want to – lol.  I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college.  I am not sure I would have done either.  At college I learned to stand on my own two feet.  I met all sorts of people from all walks of life.

time-warp

By the time I hit my 20s life had educated me some.  I still held strong convictions, but I was able to accept that it was ok for others to have their own.  I gained the belief that as long as people were respectful – we could disagree.

In my 20s I met my husband.  A match that many thought was destined to fail.  And unlikely pair we compliment each other in every way.  He was my missing piece.

bethlehem 4

In my 20s I became a teacher.  A lifelong goal realized.  I worked harder than I ever had in my life to be the best I could be.  I recognized the magic of teaching.  I became addicted to the “spark” in their eye when they “get it.”  I came to see that my presence and my attitude were as important as my lessons.  I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.

In my 20s Mom had cancer.  And I learned what it was like to be scared.  And I learned what really really matters in life.  And she fought, and she won.  I always appreciated my family, but I learned to appreciate them even more.

In my 20s I got married.  I got my Master’s Degree.  We bought a house.  We tore it apart.  We fixed it up again.  We got buried in debt.  We worked hard to get out.

Then – just about when I was ready to turn 30 – we had Meghan.

Disney 2012
Disney 2012

Mom said you do more changing in your 20s than in your teens.  She was right.  But as my 30s come to a close – I think they beat my 20s hands down.

In my 30s I learned to love my heart, outside of my body.  I learned that I would never be as important as that little human we created out of love.  I learned about family all over again.

In my 30s I learned to live without sleep.  I learned to endure tears and screeching and pain as my heart ached for my baby girl.  I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.

In my 30s I learned how to balance two full time jobs, as a mother and a teacher.

In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.

In my 30s I became really close with God.  I learned that my relationship with Him transcends walls and buildings and people.  I learned gratitude, and I learned not to be shy about my faith.

In my 30s I learned that convictions can change.  And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.

In my 30s I learned that close friends share bonds that go past time and distance.  I learned that even though I miss them, they are there when the going gets tough.  I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.

In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed.  I learned doing something is way more rewarding that complaining.

dead-poets-society-1thoreau 3

In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them.  And I learned that if you do – they will be your friend forever and ever.

In my 30s I learned what it was like to hear the words “You have a Rare Disease.”  I learned words like “Cowden’s Syndrome.”  I learned about “tumor suppressor genes,” and “genetic mutations.”  I learned about risks and tests that could take worry to a whole new level- if I let it.

rare-disease-day-feature

In my 30s I learned what it was like to hear the words “You HAD cancer.”

In my 30s I learned which body parts are “extra.”

In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”

From mousy to mouthy.

From school teacher to Mom.

From “victim” to advocate.

All these things make me who I am today.

So much has changed, and yet at my core, my heart – I am the same.

I feel.  Deeply and truly.  I care.  Often too much.  I laugh, and I love with my whole heart.  I know pain, and I know joy, and I have been intimate with both.  I know fear and bravery.  I know that I am not always right – but when I am… watch out.  Because little will stand in my way.

I know life is not fair.

Life's not fair

god-is-good-logo

I know God is Good.

This weekend I went to 2 wakes.  One for a woman who had lived a full life, and another for a young girl who sparsely got the chance.  There are too many wakes.  There are too many things that don’t make any sense.  Too many people gone way too soon.

I can wail and cry and wither away in my sadness.  I can let fear win – or I can stand strong.

Cowden’s Syndrome tries to win.  It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump.  But I will not let it paralyze us.  I will not let it win.

So we have our team of doctors.  We have our visits scheduled.  We check it all.  Sometimes its tiresome.  Sometimes its discouraging.  But I would rather be out in front of the boulder – than under it.

This is really how I view the race against Cowden's Syndrome
This is really how I view the race against Cowden’s Syndrome

Through it all I know Meghan is watching.  My student – learning from how I react, how I fight, how I handle adversity.  My teacher – teaching me bravery, courage, candor, tenacity, and stamina.

always believe

I do the best I can to show her that its important to stand up for what you believe in.

I think she gets it.  I know I do.

The 30s have been a ride, and I still have a few more months to go.

In my 30s I learned what it was like to total a car.  I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix.  I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.

photo 1

If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.”  Working with the neighborhood to change a few things at my car accident site.

https://beatingcowdens.com/2013/06/04/howard-works-to-put-a-stop-sign-in-a-deadly-staten-island-intersection/

Advocacy.  Empowering.  Invigorating.  Much more fun than lying in wait.

We have to keep our energy up, standing up for what we belive in while we are “Beating Cowden’s!”

The Grass is Green!

thankful for the bad

Sounds ridiculously cheesy I know.  Sometimes the bad things are just crap.  And some days just stink.  But, not most of them.  Really, if I think about it- just a few days now and then really stink.  The rest of them seem to hold within them some lesson, some joy, some laugh, some memory – something that makes my spirit richer than it was before.

Don’t ever delude yourself into thinking things are perfect here.  That would be a lie.  We have our whiny, cranky, in each other’s way kind of days.  But that’s not most of them.

Lots of rotten things happen to everyone.  But lots of good things happen too.

Lots of rotten things happen when you have Cowden’s Syndrome. Sometimes the key lies in looking at things from a different perspective.

perspective

Every moment.  Every meeting.  Every diagnosis.  Every doctor’s appointment.  Every report read.  Every bill fought for.  Every new teacher.  Every new friend.  Every old friendship renewed.  Every miracle.  Every ordinary moment.  They all bring us to where we are.

Maybe I have watched too much sci-fi with my husband, but to change any one thing, any event in our lives, could alter the course of our lives.

I won’t spend time wishing things away- certainly not the good, and definitely not the bad.

Sometimes the lessons hurt.  Sometimes they make us cry.  Sometimes, like when we say goodbye to dancing school, and all its emotional joy, coupled with insufferable physical pain, we get a little sad.

Then we say, if it wasn’t for dance, we wouldn’t have learned love of the stage.  If it weren’t for dance we wouldn’t have seen a growth in confidence, and an ability to manage a growing young body.  Losing dance is hard…

But if there wasn’t Cowden’s, and chronic pain, and an inability to deal with impact – would there be swimming?

Private lessons at a local college start Saturday.  Regular practice begins the next month.  She salivates when she gets near a pool.  She just wants to get better and better.

now is right on time

New sport, new school, new friends, and old ones too.  Same old pain.  Same nasty viruses.  Some things change, and some remain the same.

Sometimes I wish (quietly to myself) that life could be a little bit easier.  Then I look at my daughter, and my husband, and my dogs, and my house, and I think – things are just fine right here.

We have each other – for the ups and downs- for the ins and outs.

They say if everyone had a few moments with everyone else’s problems, they would fight to grab their own back.

We are getting by.  We are “beating cowden’s”

The grass is green enough right here.

Puzzle Piece

I remember being much younger and loving puzzles.  We would set them out on the table at home and everyone would take some time trying to get it going.  They were big and had lots of pieces and were often slow going at first.  Everything looked the same, and sometimes it could take hours to fit in a few pieces.

Then, over the next few days, and sometimes weeks, with everyone taking a turn, slowly the picture would start to take shape and the puzzle would come together.  It was always so exciting once you could make out the features, and so much easier to plug in the missing pieces.

puzzle 2

I remember the feeling of satisfaction as one would be completed.   There was something especially gratifying about those last few pieces.  It was that feeling of satisfaction.  We set out minds to this.  It took a few of us, but we got it done.  We figured it out – together.

By now you can probably see where I am going with this.

Today marks one year since I wrote my first blog post in 2012.

one

In one year the posts I have written have been read over 30,000 times.  People have stopped by to read some – or all of our journey with Cowden’s Syndrome.

30,000

I have met other Cowden’s Sufferers through this blog, and on the internet.  I have received messages, and corresponded with quite a few.  I have learned their stories, and heard about their puzzles.

puzzle 3

I have also “met” a few with other puzzling disorders,figuring life out and getting by one day at a time.

I am sometimes  forever humbled, and amazed by the odd and abstract idea that people who I don’t know have gotten to know us, and used us as pieces to help complete their own puzzles.

I noticed a link on my blog today from “pinterest.”  Having never been to the website, I clicked the link to find a picture of my family.  http://pinterest.com/pin/290974825894950598/

I was pleased that it was used in its proper context, and was mentioned in terms of rare diseases.  But, I was still amazed.  Someone had read, and linked, and…

Well, the possibilities are endless.  Thank goodness for the internet.

Where else would I meet people from all over the world,. and swap stories about a genetic disorder with an occurence rate of 1 in 200,000?  Where else would I find organizations like

PTEN

PTEN World https://www.facebook.com/ptenworld?fref=ts

Or

hope its in our genes

The Global Genes Project https://www.facebook.com/globalgenesproject?fref=ts

This last year of blogging has been an awakening for me.  It has opened my eyes to so many other people, their stories, and the world at my fingertips.  Since our diagnosis in the fall of 2011 it has become so important to become aware, to gain support, to advocate for others, and for ourselves.

I remember working on puzzles as a little girl.  I remember that feeling of satisfaction when the puzzle was complete and the picture was clear.

I don’t do those kind of puzzles anymore.

Now I figure out how to prepare 2,000 denim ribbons and get them distributed on time for Rare Disease Day.

denim ribbons

Now I work on helping my girl find her place in this world – trying to be a “regular” kid, yet undergoing so many more stressors than any 9 year old should.

I work on puzzles that lead us from one doctor to another, dropping them like leaves off the trees on a fall day.

I work on puzzling questions, and I persist until I get answers.

puzzle 1

I get overwhelmed sometimes – looking for the pieces I can’t seem to find.

Sometimes I want the puzzle to have its edges all done, the way I learned.  I want it to be neat.  I would like all the matching colors to go together

But, that isn’t how life is designed to be.  Not with Cowden’s Syndrome.

Not for any of us really.

Maybe it’s not a puzzle – but more of a domino game… branching off in so many different directions.  Occasionally stopped by a dead end – only to find another path.

Or maybe it’s just a puzzle of an “atypical” sort.  Not one that actually fits in a box.  One that requires patience, time, dedication and focus.

Thinking_Outside_The_Box_by_mclelun

In front of me tonight are 22 pages of blood work drawn on my daughter over the last month.  There are some definite issues.  My phone consult with her doctor is a week away.  In the mean time I am left to try to put it together the best way that I can.

I handle each piece delicately, gingerly.  I don’t want to damage anything, or miss anything either.

There is no picture, no model to duplicate.  There are no directions.  No guide.  Just instincts.  Prayer.  Love and support of friends far and near.

broken pieces into masterpieces

Tonight I will study until I can figure out one more piece.  Then there will be tomorrow.

The journey is long.  The puzzle evolves.  I am not going anywhere.

Thanks for sticking around.