Tag: Cowden syndrome

Christmas Letter 2012, and some unexpected happenings

Published on by beatingcowdens3 Comments
Disney – August 2012

This is the letter I send in my Christmas cards… shared for my “on line” friends.

“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34

December 2012,

Dear Friends,

It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus.  This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.”  Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.

Life in the Ortega house continues to be one of adventure.  We are blessed.  Meghan excels in school, and loves to swim and dance.  Medication allows her to move her body without pain.  We are grateful each day for each other, as it is that bond that allows us to weather the storms of life.  And there have been some this year!  Some time in early spring, Felix joked that I should start on my Christmas letter.  He wasn’t kidding.

We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”

We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist.  We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ.  We have been scanned repeatedly – each MRI separate.  Sonograms of every body part you can imagine.  All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.

There is so much overlap as to how everything came together this year that it is even hard to summarize.  I feel like sparsely a week went by without an appointment – many of them in NYC.  I laugh now at the days I swore I would NEVER drive in the city.  I don’t use the word “NEVER” much anymore.

In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee.  The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap.  We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.”  Again, not if, but when.  So we wait.  She will be scanned again in February to determine the status of the very stubborn AVM.  Cowden’s Syndrome complicates any vascular anomalies.

In March I underwent a “prophylactic” bilateral mastectomy.  After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step.  Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction.  The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast.  The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.

Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later.  A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy.  So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.

A month later we took Meghan for her thyroid scan to Sloan Kettering.  We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area.  So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.

Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney.  Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists.  I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!

In the midst of our medical “stuff,” life continued around us.  In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan.  A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed.  Our hearts will never be quite the same.

Meghan and GGpa

Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps.  No one is quite sure exactly what happened, but it is evident that the angels held her that day.  She suffered a serious head wound, and severe bruising, but broke nothing!  She spent days in ICU, and returned home the end of that week.  With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day.  I admire my grandparents.  As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it.  They are role models to us all.

Love my Grandparents!

Their marriage reminds me that God gave me a great gift when he sent me Felix.  I can say that we share such love through God’s grace – that I can not imagine my life without him.  He is my soul mate – and my sanity!

I guess I leave you with – to be continued.  No words of wisdom this year.  We are trying our best to take it one day at a time.  The tree is up.  We have our hearts and our heads focused on what matters.  We certainly have had plenty of lessons!

We would love to hear all the things that are new in your home!

Warm Christmas Blessings,

Lori, Felix, Meghan, Allie & Lucky Ortega

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story

*****************************************************************************************************

See, and just when I thought it was safe…

The cards were in the mail Sunday night.  I was getting it together.

Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.

I stopped at the stop sign.  I looked to my left down the one way street I have traveled so many times before.

I was clear… and I drove.

3/4 of the way through the intersection…

I really did love my Hyundai

I didn’t see the SUV until it was in my rear driver side door.  I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.

His car ended up a block away.  There had been no braking.  No horn.  The impact shut his car down.

As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.

The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.

I have laughed and cried a lot over the last 24 hours.  I am grateful that I am walking and moving.  I am tolerating the muscle spasms and bruising.

As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood.  What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.

The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to.  Maybe… just maybe.

So I think of my little love.. and I am so happy she is safe.  And maybe that thought is where I will draw my peace.

“Sometimes your blessings come through raindrops…”

Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….

Anyone else looking forward to 2013?

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!”

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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.

Paying it Forward

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Meghan‘s school motto  is “Pay it forward,” and it is one of my most favorite things she has learned in her 4 plus years there.

The students are taught that it is important to give to others, with no expectation of return.  And they develop the knowledge that when others do for them, favors can not always be directly repaid.  It is actually a good philosophy of life.  Do for others for the sake of doing good.  If everyone follows that, chances are when you need a helping hand, someone will be there to stretch it out for you.

So this morning we joined some of my colleagues from school at the “Autism Speaks” walk.  We are facing a major hurricane tomorrow.  Schools have already been closed.  The MTA has shut down bus service, yet the turn out at the BEACH for this walk, was absolutely amazing.  I was full of pride as I stood with my colleagues in support of one of our own.  The proud Mom of a handsome autistic son, and an absolutely beautiful daughter, is a woman of true class.  She is a teacher at my school who I am grateful to have as a friend.

Her team raised close to $2,000  in support of Autism research, and the love in the air this morning was overwhelming.

Everywhere I looked there were fighters.  Young autistic children, and their support networks – strong and mighty.  Prepared to do whatever they can for their children.

Even though our battle and journey differs from theirs, I felt I was among kindred spirits.  Scores of families that keep fighting, keep battling, to ensure their loved one has whatever they need.  In so many ways we wear the same…

We will fight, by whatever means necessary for our children.  That makes us all the same where it matters.  The battles are different – but the war is essentially the same.  And we will not be stopped until it is won.

Paying it Forward…

This is the same family, that created Meghan’s denim ribbon necklace.  This is the same Mom, who – even though she has a million things on her mind each day, took my daughter’s need for an identity to heart.  Wearing her own, beautiful diamond puzzle piece each day,  she took Meghan’s concerns home to her husband the jeweler – and he made Meghan’s needs his priority.

Her own necklace is far more beautiful, but the point is she “gets it.”

And it wasn’t long before Meghan had this beautiful piece around her neck, representing rare genetic disorders, like our Cowden’s Syndrome.  There was nothing of its kind in the world, but not to be deterred – this Dad, who also “gets it,”  didn’t stop until it was made.  My girl has her identity  now.

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

Hopefully one day soon, The Global Genes Project will be able to sell these to anyone who wants them.  I know talks are taking place right now, and it is so exciting.

So this morning, it was easy to make our way down to the beach, to support Autism Speaks, and a great family.  It is easy to remember it is not all about us.  That others suffer deeply, and daily.

We are home.  Showered an in our PJs.  We are prepared as we can be… waiting for the storm.  But we will persevere.  It will be OK.  The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love.  Pay it forward.  You will be awed by the return.

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!

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…

It’s not all about us

Published on by beatingcowdens3 Comments

And this is how the day started.  With thoughts of Friday.  Never a good way to start the week.  I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time. 

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street.  As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else.  I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus.  UGH!

Pretty much that sums up how the day continued.  There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time.  And I don’t claim to be free of frustration.  Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view.  I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes.  And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it.  Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true.  I look at my grandparents, still married  – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out.  I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often.  So many people could learn life lessons from my grandparents.  They are role models to be emulated in so many ways.

Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease.  Cowden’s Syndrome or any other are not prerequisites for compassion.  You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here.  No major new doctor news.  The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her.  The joint pain is returning, slowly, one spot at a time.  It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week.  Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain.  We go to the eye doctor in 2 weeks.  The cardiologist is the beginning of December.  He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart.  Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules.  That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..)  But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think.  While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure.  I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th.  And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out.  We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child.  She sees a lull in doctors as an opportunity to spend time helping others.  There has to be a bunch of lessons there.

Take a minute to breathe.  Time passes so quickly.  Hug a loved one.  Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

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!-