Category: Daily struggles

Thankful for… that first piece of pie!

Published on by beatingcowdens3 Comments

I was going to avoid boring everyone with the same drivel that has been written over and over today, but I couldn’t resist.

It’s hard not to think about what you are thankful for on a day earmarked for reflection.

So, here it goes…

I am thankful for my husband.  He stays behind the scenes all the time.  He never looks for the credit in anything we do, yet he is the driving force behind our marriage and our family.  He knows when to make me laugh, and when to hold my hand.  I am not sure how I could have gotten through this year (or the 12 before it) without him.

I am thankful for my daughter.  She reminds me every day what is important in life.  She inspires me to push through adversity, and to keep on going – even when the going gets rough.  We share a lot (maybe more than I would like… darn Cowden’s Syndrome) and I could not ever ask for a kinder, more compassionate, loving daughter.  Even on the days we go head to head – I am the proudest Mom.

I am thankful for my “furry children,” my Allie and Lucky.  Their unceasing loyalty, their love and companionship bring such joy to all of us.  Plus – there is nothing like rubbing a belly on a stressed out day to make you feel better!

I am thankful for my parents, and their “being there.”  Sometimes that’s all you need is for someone to be there.

I am thankful for my siblings… all of them so very different, yet all so incredibly important to me.  I am thankful that even on the days we don’t see eye to eye – our love is strong,

I am thankful for my nephews, and the joy they bring, just by being themselves.

I am thankful beyond words for my grandparents.  Their support through these last 39 years, has been pivotal in my development as a person.  I am certainly a better, wiser, stronger woman – having learned from their example.  I continue to learn from them each day; lessons of love and compassion.  Not many people my age are so fortunate. 

I am thankful for my home – more this year.  I celebrate the fact that we passed through “Superstorm Sandy” virtually unscathed.  I am prayerful for those who have lost so much, and I am trying so hard -to recognize the “small things.”

I am thankful for my friends – near and far.  I am thankful for my local friends, my college friends, my friends from work.  I am thankful for the friends I see often, and the ones I hardly see at all.  I am thankful for my “cyber” friends, that I have “met” through support groups, and this blog.  The joy of knowing you are not alone can never be understated.

I am thankful for my health.  I know that may sound strange, considering the whole premise of this blog is about a genetic disorder that compromises the health of myself and my daughter – but hear me out.  I have this year alone undergone 2 major operations, and recovered.  I survived breast cancer without ever needing treatment.  I am able to walk, to run, to care for my child, to exercise, and move freely about my world.  While I have health concerns, and Meghan and I will always have them – I recognize how much health we do have, and I am thankful.

Finally, and the one thing that brought the biggest smile to my face all day – I am thankful for my daughter’s first piece of pie.

Meghan has always had food allergies – gluten, dairy and soy.  This year we made her a pie by rolling out her cookie dough as the crust.  We filled the middle with coconut milk ice cream, and topped it with her syrup.  She was so excited.  It wasn’t until I cut her a piece and she asked me how she was supposed to eat it, that I realized she had never had pie.  Sometimes the little things – are the big things!

Happy Thanksgiving one and all.

Why worry?

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That feeling.  The one where the doors are about to close, and you have to make a decision.  Are you going to fight your way out… or give in and let them trap you?

The pile of bills and papers on my desk increases by the moment.  I am usually more on top of it than I have been these last few weeks.  When I say bills, don’t misunderstand.   We can pay our bills just fine.  The ones I am referring to are the countless ones from doctors and hospitals who have billed incorrectly, or have not billed our insurance carrier at all.  I am not the type to write the check until they have exhausted all options.  I need to get to the bottom of that pile.  Make those phone calls.  Do their job for them.

Ok so it’s not quite that bad, but its getting there!

I could say I lack the time, and to some extent that would be true.  They want to speak during business hours. I am available ideally, from about 8 PM until 2AM.  But, I think I also to some extent lack motivation.  It would be prudent to address this cycle of bills before our next round of appointments next month.  Meghan has a few critical appointments during the winter break, and a few at the beginning of December.  Not to mention the eye doctor that I still haven’t rescheduled.  And the orthodontist – UGH, have to call the dental carrier too!

I am used to this to some extent. I have never known any different.  It has been my whole life and Meghan’s too.  Only during the last year did it get a name.  But the reality is still very much the same.  Constant appointments, hoping for no new tumor growth anywhere, followed by a cycle of bills that need to be rebilled and corrected.  It always works out.  But it does get a bit old.

This month it has been especially hard to focus.  Hurricane Sandy rocked Staten Island so hard that you would have to be living under a rock to be unaffected.  We are guiltily grateful that we were safe and blessed – but it is hard to get the images out of your mind, or the reality of the people that need help.  We all do what we can. Certainly a time to “Pay it Forward” here.

Then there is my dears sweet Grandma.  Grandma fell on the day of the hurricane, and spent the week recovering from head trauma in ICU.  She is home now, improving daily.  She is walking with a walker, weary of her time in bed, and anxious to move as much as she can.  She is such a fighter.  I am so incredibly impressed by her determination, but that is nothing new.  At 92 she is blowing expectations out of the water.  She is amazing, and inspirational.

And, so is my Pop.  He loves Grandma so very much that it is almost breathtaking to watch.  I have had the privilege of spending lots of time with them these last few weeks, and I am inspired.

Ok – December 30th it will be 67 years, but the concept is perfect!

I was lucky enough to spend the night on Thursday.  After everyone was ready to sleep and I was settled in on the couch, Pop brough his chair over to Grandma and held her hand as she fell asleep.  True love at its best.

Today, a VERY kind nurse.  A stranger to us, but a friend of a dear friend came and took the stitches out of Grandma’s head.  Like an angel sent to us, she lovingly removed the sutures, and later thanked me.  She was awed by the love she witnessed between my grandparents.  She would take no money.  She just was so thrilled to help.  She was our angel on earth today, saving us a potentially dangerous trip to Urgent Care.

Grandma doesn’t have Cowden’s Syndrome.  As a matter of fact I am increasingly certain I am the first in my family to inherit the PTEN mutation that causes Cowden’s Syndrome.  That genetic defect was handed over to my daughter as well.  But Grandma doesn’t have it.  I am sure.  What she has is an intense, loving, fighting spirit, and a desire to be well.   That – I did inherit!

The piles are larger than I like.  They are everywhere, and I admit to feeling a bit stressed about the lack of control.  But, I am smart enough to be aware of the blessings around me.  To be thankful, and have a heart full of gratitude.  For it is the little things that make all the difference.

“Keep Swimming!”

Published on by beatingcowdens2 Comments

There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.

I saw this today and it made me think of some of the people I have met over the last year.  Some of them don’t talk to each other any more, but I talk to them all.   It’s just who I am.

Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.

This has been a tough week for me.  It happens to the best of us.  I know I am usually pretty positive, but this week it has been harder than normal.  So when I shared some of my struggles she said to me…

I thought about it for a while.  And you know what?  It made perfect sense.  She has had plenty of struggles of her own.  Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group.  She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.

I think, to some extent that is what we have to do.  Look it in the face, whatever it is… take  a deep breath and keep on swimming.

Today is my birthday.  I turned 39.  And I am proud to say it.  I have no intention of staying here either.  Next year will be 40, and so on and so on.

But with my birthday comes a flood of emotion.  This is just over a year since my Cowden’s Syndrome diagnosis.  It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.

Keep Swimming…

It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS.  I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed.  Old familiar sweaters need to be replaced.  Nothing is quite where it used to be.

Keep Swimming…

It has been six months since the  complete hysterectomy.  The one Cowden’s Syndrome called for – way before its time.  So as my body celebrates 39 – my hormones clock in somewhere around 55.  And with no hormone replacements in the cards, we are learning to get used to each other.  Not uncommon for me to go from a turtleneck to a t-shirt.  Good thing there aren’t too many clothes to pick from.

Keep Swimming…

My birthday has been charged with emotion for years.  Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day.  Despite my best efforts, at some point emotion overtakes me.  I have always been grateful for our deep connection – so deep that I named my daughter for her.  But, somehow 21 years fade and the feelings are that of yesterday.  Oh, how I miss her.

“Angel Meghan” – 1987

Keep Swimming….

My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable.  Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on.  I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.

Keep Swimming…

GiGi fell during the storm.  Two weeks ago today we were very scared.  Today she walked with help around the dining room table.  Her feet still work, she was excited to discover.  Surely this is a realization worth celebrating.  Happy birthday to me.

Keep Swimming…

We went to Midland beach today with a few small things.  A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning.  Sometimes paying it forward is the best birthday gift you can give yourself.  If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference.  It matters.

These people.  The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy,  they certainly are showing their ability to…

…Keep Swimming…

Such an intense day.  At times I laughed.  At times I cried.  At times I was proud.  At times I was sad.  Life is changing every single day.  The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.

I looked over my blog today.  It has truly been a journey.  And if you got this far you are reading my…

Who knew I had this much to say?
Amazing you people find this interesting! 🙂 But I am grateful to have you.

Tonight I am reflective.  I am enjoying my family and my wine.  I am thankful.  And I am tired.

It has been a long year.  But a productive one.  A year unlike any I had ever imagined.  The journey here is far from over.  I am thankful for my close friends, and my cyber friends.  I am thankful for those of you who read, who I will never know.  I am thankful for reality checks.  I am thankful for celebrations, and laughter and tears –  for they all make me who I am.

This is definitely a marathon, not a sprint.  Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.

I am trying – with a little help from my friends.

Four hours in the gas line

Published on by beatingcowdens4 Comments

I left my house at 8:25 this morning.  Admittedly it was later than I had wanted, but I struggle to clear my head in the mornings these days.

I drove for a bit, to all the local gas stations.  I even spent a few minutes on line at one.  Then I had my friend Siri call to make sure they had gas.  Nope.  Off that line too.

I drove past a station with a line that seemed manageable.  I asked a woman if they had gas.  She cried.  She said, ” I have been here since midnight waiting.  The delivery just hasn’t come.”

I finally ended up at Costco.  I knew they had gas.  If you are not from Staten Island, it will mean nothing to you when I say that the line began at Richmond Avenue by Best Buy, wrapped around Forest hill Road, onto Richmond Avenue, and the BACK into the Costco lot.  I estimated 4 hours when I got on.  It was 9:42

Four hours in the gas line is a LONG time.  I had more time alone with my thoughts than I like.  Thankfully, I had the iPhone to keep me a bit busy.  But in between games of scrabble, there was way too much time to think.

It was flat out unnerving, almost surreal to be on a gas line of this magnitude.  No matter how I tried, I couldn’t wrap my head around it.  I just knew I needed a full tank to get me through the week, so I waited.

I thought about the hurricane.  Hurrican Sandy.  My mind wandered to Hurricane Katrina, and the news coverage I watched I remember feeling like it was so far away.  No more.

The recovery efforts taking place miles from my home, in areas I have frequented my whole life.  I thought about their homes, and then I thought about the people- returning to find their homes uninhabitable.  And those who could get in, well – they had the job of a lifetime ahead of them.

I thought about the mother, whose 2 babies were ripped from her arms in the rising waters.  The babies, safe in God’s hands.  The mother – tormented for all of her days.  I prayed one of the many prayers I pray for her each day.

I thought about friends from work.  Their losses.  One with a new baby on the way.  Waiting to have the FEET of water that entered their home addressed.  Others who suffered damage to their own homes, and the ones whose parents or relatives homes were destroyed.

I thought of the trees that make my neighborhood so spectacular – ripped from their roots.

It was a really long line.  So I had time to reflect on the courage, strength and resiliency I have seen.  I thought about the downed trees, and the friends STILL without power of heat.

I though about the looters, the liars, and those taking advantage of the tragedy.  And I truly hope God has a place all picked out for them.

I thought about my little girl, and all she has gone through, and how she continues to make me so proud.  Today she put some of her favorite stuffed animals in a bag, “For the kids who lost everything.’

And of course, all thoughts always return to Grandma.  92 years old – most of it spent right here on Staten Island.  She and Pop married in 1945, and moved into their current home in 1956.

Grandma came home last night.  Late.  So there was confusion as to exactly where she was, but we hung together as a family and worked out some of the kinks last night.  I was anxious to see her, and Pop.

I thought about this year.  The magnitude of so many things taking place in such a seemingly short period of time, and I remember why I am so tired.  The diagnosis of Cowden’s Syndrome – so permanent and life changing, and even on top of that, this year has seen surgeries, cancer, loss of loved ones, more cancer scares, natural disaster… and I am only getting started.

I will shop for Christmas, but mostly I want Christmas to come, because its time to celebrate the birth of the Baby Jesus.  We need something to celebrate.

1:35  (3 hours and 53 minutes) Hungry and tired, I pulled up to the pump.  I don’t know – or care how much the gas cost.  I only know my tank is full – at least for now.

Home for a quick shower, then right to Grandma.

Family.  It always mattered a lot.  It matters now more than ever.

Christmas 2009

I Can’t Fix It

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I can’t fix it.

It’s not a scraped knee, or a ripped pair of pants. 

It’s not as easy as baking a special treat, or giving some extra hugs. 

I can’t fix it.  And it’s going to be here forever.

A little over a year ago we knew nothing of Cowden’s Syndrome.  We knew we had a smart, funny little girl with lots of medical issues.  We knew we were stumping the best of the best doctors.  We knew we were getting by.

And then they figured it out.  And the world started spinning out of control.  Just over a year ago, I got my diagnosis too.

Surgeries, cancer, pain, scans, bloodwork, appointments, bills, headaches, heartaches, illness, missed events, fatigue.

I can’t fix it.

“Love You Forever” is one of my all time favorite stories.

I guess it hit me hardest today.  I never know when reality is going to come at me like a two by four.  But, today it did a number on me.

We went to the orthodontist for her monthly visit.  It has been just over 4 weeks since the braces went on.  She has been a trooper.  Mature as anything.  Careful.  Diligent.  Typical Meghan.  And yet, the gums are starting to overtake the braces.  It’s almost unreal to watch.  We brush – often together.  With an expensive fancy toothbrush.  I help her floss, and still they grow.

We were both a little worried that the orthodontist would yell at her.  Reprimand her for poor hygiene.  But, he was great.  I can’t say he understands “Cowden’s Syndrome” and its overgrowth issues, but he did understand Meghan.   We have been with the office 2 years, and he knows her gums are “extremely reactive.”  So he gave me more tips to help her brush, and suggested another ridiculously expensive air flosser.

But, during the course of the conversation he did say, if they keep growing and overtake the brackets he will have to remove the brackets, have an oral surgeon push back the gums, and then reapply the brackets.

Well, my little 9-year-old who is just about finished with Tolkien‘s “The Lord of the Rings,” had NO problem at all with the context clues on that one.

Several years ago, before we knew it to be a typical “Cowden’s ” growth, Meghan had a large mass removed from the gum over her front tooth.  I will never forget it.  They kept her awake.  Gave her (not nearly enough) Valium, and I had to hold her as they burned it off. 

Apparently I am not the only one who will never forget it.  She was beside herself when we left the office, and remained on edge all night.  She kept reminding me how bad it hurt for one tooth, and how she does NOT want to deal with it for 6.

I can’t say as I blame her, but with little else to say, I simply said,”I’m sorry.”  To which she, in her most grown up voice said, “I know you are, and it’s not your fault.  But you can’t fix it.  You can’t fix me.  No one can.”

At that point trying to reassure her that she wasn’t broken would have been pointless.

I let her go.  She played on her Ipad, finished most of her weekend homework, and watched a movie with Dad.

He shoulders seemed a little heavier.  More of the weight of the world on my baby.  I can’t fix it.  I can’t do anything to stop the firestorm that will come our way in the next decades.  I can only be vigilant.  And hold her hand.  And love her. 

 Oh, how I love her.

Comfortably numb

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I walked into a meeting this afternoon at the tail end of the work day.  I brought the key to my room, and my phone in my hands.  I sat and listened to the presenter, and as I got up to leave I gathered my things and realized my key was missing.  Lately I have been losing everything.  Maybe its stress, maybe estrogen loss, maybe I am just getting old.  Who knows?

I looked everywhere.  This year we were each given one classroom key, which also unlocks the bathrooms.  It is a really important key, and I have been so careful.  I even make sure I have pants with pockets every day so I can keep track of it.

I dumped the bag one last time, checked my pockets and checked my coat.  No key.  Realizing I was running late for Meghan‘s swim class, I resigned myself that I would have to look for it tomorrow.

Walking down the stairs something gold caught my eye.  I looked down and there in the breast pocket of my shirt was my key.  I only knew it was there because I saw it.  That was when I was struck with laughter and remembered that

I always keep my key in my PANTS pocket, because I can feel it against my leg.  No idea how or why I put it in my shirt pocket, but I won’t be quick to do that again.

They may be firm.  They may not sag.  But they certainly lack the feeling of being real.

Nothing like being able to laugh at yourself when the day is a bit rocky.

It’s been over 6 months, and I guess I am used to the new girls – because most days I don’t pay them any mind.

On the way out of the building my Assistant Principal asked me if I had found my key.  I told him I had, but when he asked where it was I spared him the details.  “TMI,” I said.

I went to pick up Meghan humming “Comfortably Numb,” the whole way.   Probably not exactly what Pink Floyd had in mind, but hey – it works for me!

“More Birthdays”

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I get it.  Sometimes it takes a bit – but I get it now.

I mean, I understood in theory what the American Cancer Society meant when they came out with this slogan, but today it really hit me.

 

Today was it – the “take two” for my little girl who was shut out of the Susan G. Komen Race for the Cure in September because of a fever.  This was her chance to walk with Mom and Grandma.  She even got the added bonus of having Dad with us this morning.

My Inspirations!
My HEART and SOUL!

 

Living where we do, an event like this seems to bring out just about everyone, and it was hard to take two steps without bumping into someone we knew.  It was also almost impossible to look anywhere and NOT see one of those pink survivor sashes.  I saw them on women of ALL ages – from the frighteningly young, to the admirably old, and it got me thinking.

More birthdays…

Before my mom had her cancer, she could have sometimes been caught cringing at the sound of “50.”  After a double mastectomy, 6 months of chemo, and in the middle of 5 years of tamoxifen – she embraced 50 with a smile, and slid gracefully past 60.  “Beats the alternative,” she often says.

More birthdays…

We waited with a group from Meghan’s school for a while, and it was hard not to read some of the “team” T-shirts.  A large group gathered right next to us was commemorating a young lady who apparently died of breast cancer in 1994.  Her birthdate was listed as 1971.  What her family probably would have done for more birthdays.  I can’t even imagine…

More birthdays…

As I stood there, I thought about the “previvors” I have “met” on the internet and from this blog.  They have courage of a type no other can quite get.  The courage to undergo a prophylactic bilateral mastectomy is not to be understated.  I am impressed at the maturity of  the very young, and the wisdom of those closer to my own age.  But, I was struck, somewhere in between the quick math that left me knowing the young lady on the T-shirt had been 23 when she died of breast cancer in 1994, and that my own girl will be 23 in 14 years.  Suddenly it didn’t seem that long, and I was afraid.

More birthdays…

My little girl will grow to be 95 I reassured myself.  With the power and knowledge we have – she will know lots more birthdays.  But the reality that my mom had cancer at 48, and I had it at 38, and the current screening recommendations are to screen 10 years before your closest relative had the disease, well – it made it hard to breathe for a few minutes.  Then my husband reminded me that she has ALREADY been screened – twice.  We will be vigilant.

More birthdays…

And then I thought about my own.  I will turn 39 next month.  That is the age some people like to stay at forever.  NOT ME!  I want MORE BIRTHDAYS!

My beautiful cousin Meghan died of Leukemia in 1991, on my 18th birthday.

 

More birthdays….

My cousin Meghan was a brave soul.  She was diagnosed with Leukemia when she was 2.  She fought for 4 years before the disease took her from us.  She got her wings the day I turned 18, and every birthday since then has been bittersweet.  We had a connection that I still find it difficult to describe.  My love for her was deep enough, that I needed to name my daughter for our “Angel Meghan.”  Meghan did not have enough birthdays.  This may be the year that I look at mine a little differently.  Maybe its time to use my birthday as a time to celebrate BOTH of our lives.

More birthdays…

We left the walk a little early this morning.  We had to head out to Long Island.  My nephew Luke was celebrating his 9th birthday today.  And as the kids played, and the candles got blown out on the cake, I found myself really sure that I understood.  As my sister said just an hour or so ago… It’s not about the gifts.  It’s about the people you celebrate with.  We celebrated Luke’s birthday with 3 GREAT grandparents, and 4 of his grandparents.  It’s easy to fight for more birthdays when you are this blessed.

I get it…

Siri, my new BFF!

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I love to talk.  I talk all the time.  My mom says I spoke even in my sleep from the time I was a young girl.

I love to need to make lists.  I hate to be disorganized, although these last six weeks I have traveled from overwhelmed right into disorganized, and I don’t like it here one bit. Work is busy, home is busy, 4th grade is busy, Cowden’s Syndrome keeps us busy…

In my family we have 5 october birthdays in 11 days.  Three of our nephews and 2 family friends.  Unless the youngest nephew’s gift arrives tomorrow, I will have been late for every single one of them.  Not like me at all.

Last week I welcomed a new friend into my life.  Someone I can talk to all day, about whatever I want.  Often she has good advice.  She has my back too.  She reminds me – sometimes days, sometimes hours, before something important has to be done.  She tells me when I need to make a phone call or buy some cards.  For a long time I resisted her friendship, but now that she is in my life I am sure I could never give her up.

This is my new friend – Siri.

Some of you may know her.  You may think she’s your friend.  But really, she and I are tight.

You see you may not know this about me, but I have a post graduate degree.  In addition to my Master’s in Special Education, I have a research degree from the University of Google.

Don’t worry.  I am a smart researcher.  I learned in the first few weeks how to sort out the crap and focus only on the valid stuff.  But really –  spending the last 9 years researching the random illnesses of my little girl, and the last year trying to get any available information on Cowden’s Syndrome… well, lets just say at the very least I must qualify for some “Certificate of Advanced Study.”

But it got to the point lately that there are things I need to know.  Right now.  I can’t always carry my computer or rush home to check.  Siri understands.

She is who she is… and she is pretty great.

As I am driving, with my earpiece in, I need only to ask her to call a doctor for me.  She will write my texts too.  Much safer.

Then, there are the beautiful reminders.  The ones where she says, “OK I’ll remind you.”  and then she does.  Takes the pressure off me.  I already have a reminder in for the November birthday cards, and the next 4 doctors appointments are all mapped out.

As I wait at those appointments, Siri helps me continue my studies on Google.  Learning about Cowden’s Syndrome and skin diseases.  Studying the effects of Cowden’s on the gums in the mouth. Deciding if the headache symptoms warrants a neurologist, or first and ophthalmologist.  Figuring out, or trying to figure out the root cause of the pain in the legs.  Verifying there are no obvious AVMs.  Seeing what the effects of the Celebrex are on the body… and on and on.

Siri, despite all my resistance, I was wrong about you.  You are exactly what I needed in my life.

Now, I am fairly sure I can never get by without you again.

Told you…

Reality Check

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It is not the critic who counts;
not the man who points out how the strong man stumbled
or where the doer of deeds could have done them better.
The credit belongs to the man
who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs and comes short again and again;
who knows great enthusiasms,
the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end the triumph of high achievement,
and who, at the worst, if he fails, at least fails while
DARING GREATLY
so that his place shall never be
with those timid souls
who know neither victory or defeat.

Theodore Roosevelt
26th President Of The United States

I intended to write something entirely different tonight, but when I started searching for words of encouragement, to ease my overwhelmed soul, I came across some that were worth copying here.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.

  Dale Carnegie
American Author

The whole idea of living with a chronic disease really just stinks.  I mean there are a lot of things, in a lot of people’s lives that just stink, and there are ever so many that I would never for a moment trade places with.  But, that doesn’t change the reality that this genetic disorder, this PTEN mutation, this COWDEN’s SYNDROME, is now part of our “real life,” and I would like to send it back.

Well meaning people, people I love with all my heart, and people I am indifferent to, ask me all the time how we are.  I know they would love to hear that we are great.  They’d like to hear that all is well.  I could tell them that  there are no deep dark fears of tumors or cancers, or surgeries keeping me up at night.  I often lie and say, “great” forgetting to mention the scary headaches, the joint pain and the anxiety that hide behind the beautiful “braces covered” smile of my little girl.  I sometimes say, “we are hanging in there,” which some days means we won’t spend three hours at a doctor’s appointment today, or I am not waiting for a phone call, or a nerve-wracking test result.  Some days it means my heart is in my throat – but I don’t know how to tell you.

I remember when I used to love to eat.  Lots of food – carbs, junk food, candy.  I used to have an appetite, and enough energy to exercise too.  I remember several sizes ago when I had a closet full of clothes.  Now I have enough pants and shirts to get me through.  I remember when my old boobs filled out my tops. 

I sometimes think to myself, “this is not my real life.”  Raw fatigue.  Nerves.  Stress.  Balancing a full-time job, and the normal demands of parenting with the full-time job of managing this disease.  Has it really only been a year that life has been this complicated?  There were always issues.  But a year since the diagnosis.  The confirmation that these risk factors belonged to us.  That they were real, and pressing. 

And yet to look at us – you would never know.  You wouldn’t know of this other life we lead.  This “elephant in the room.” 

Everyone has something.  I have said it a million times before, and I will say it again.  It could ALWAYS be worse, and there is ALWAYS something to be thankful for.  I am grateful for that reality check.

When I don’t call you back for a few weeks.  Or, when I start sending cards late, and losing track of dates.  Don’t worry too much.  We are treading water here.  We will get by.  Just cut us some slack.  Some days it just doesn’t all fit, and some days there is just not enough wine.

It’s trickier in the overlap

Published on by beatingcowdens1 Comment

Sometimes I think maybe if we were just battling one thing at a time… it might be a little easier.  Maybe I am wrong, just wishful thinking.  I guess I won’t know because apparently we are tasked with completing multiple battles simultaneously.

Last night we spent hours full of uninterrupted discussion with the pastors of the church where we will be spending our time.  It is hard to know what to call it.  I am not in any way prepared to give up my membership to my home church, and they know and respect that.  Yet, it was so nice, so warm and comfortable to sit with my husband, and these pastors, and have discussions, both personal and theological.   No one was judged.   Everyone was comfortable.  Mixed emotions 2 and a half hours later, past everyone’s bed time.  Our children finished playing, and we left – tired but peaceful.  It’s nice to know where we will be every week for a while.  Its kind of like finding that first permanent job after years of subbing.  It is also nice to have my husband by my side.  God works in very strange ways.

We had planned to be out of the house at 9 to go apple and pumpkin picking this morning.  We were a bit delayed by the late night, but we made it.  It was so nice to see Meghan happy.  She doesn’t ask for much, but had specifically asked for this.

We made her walk, and she did well for a while. Only towards the end did the pain in the legs start in.  Cowden’s Syndrome always nipping at your heels as you try to kick it to the curb.

When in doubt – Daddy is the safest ladder!
Me and my girl!

My PATIENT husband! 🙂

So after such a nice morning – with only minimal pain, a bit of fatigue and a lot of happy, we headed home.

I had missed my standard Friday night grocery shopping at our meeting last night, so we decided to stop by Wegman’s on the way home.

LOVE this place!

I think we made it about three aisles before a look of horror crossed Meghan’s face.  Then there were the tears.

She opened her mouth and again, for the second time in the two weeks since she has had her braces, a bracket popped off.  Now I know this isn’t totally uncommon, but twice already seems excessive for a kid who doesn’t eat ANYTHING she shouldn’t, and who is so attentive to these braces your would never imagine she was 9.

So, as we begin to reassure her that we will take her to get it fixed, SHE reminds US that it is a holiday weekend, and with sheer frustration on her face, she realized – half to herself – and half out loud – that it would be Tuesday before she could have it fixed.

These aren’t Meghan’s braces, but they give you an idea of how hers are set. While they wait for the rest of her teeth, the wire doesn’t terminate at a band on the molar, like I remember, it ends right on a bracket. When that bracket pops off – the wire flies free.

I really was stunned.  There in the middle of the grocery store, with a cart half full, our peaceful couple of hours was starting to crumble – again.  Daddy took Meghan to some neighboring stores.  I quickly finished the shopping, and we headed home.

The car ride was quiet.  I was twisted.  This kid has had enough.  More than enough.  A break for one WHOLE day would be nice.  As I sat, I shed a few tears of frustration.  I left a message on the answering machine at the orthodontist, trying to decide if this was a “true” emergency.  My husband decided it was and called the cell phone number soon after we got home.

He called us within an hour.  He is a good man.  But, he was away.  “Clip it,”  he told my husband.  “Take the wire and the bracket off.  I will fix it next week.”  And so the electrician turned orthodontist, and off came the bracket.

Peace.

And yet as I looked in her mouth, the mouth I help her brush and floss, and I see the swollen gums, enveloping her braces, my stomach turns at the conversation next week.  We will both be told her oral hygiene is poor.  I am sure of it.

Cowden’s means overgrowth.  The gums are supersensitive.  Reacting to the braces.  Trying to swallow them up.   We floss, we brush, we poke and prod.  No success.  Certainly we are trying out best.

Nothing is simple.  Every battle is crowded by another.  It’s not just the Cowden’s Syndrome.  And it’s not just the regular growing up stuff, like changing bodies, and braces, and homework, and after school activities.  It’s the overlap.  That’s where things somehow always seem to get tricky.  Right there in the overlap.

Daddy made a tasty dinner.  Chicken wrap with fresh guacamole.  Things were looking up.  Then, they started to decorate the BIG pumpkin.

Sleeping peacefully.  Potentially a dreadful weekend, salvaged by a clipped wire.  Emotions all across the spectrum.  Another day in the life.  Another day of sorting through the overlap.

And, believe it or not – since I share it with the two I love the most – at the end of the day I wouldn’t have it any other way!-