The Story of the Girl and Her Mom

once upon a time

So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.”  Soon after they diagnosed her, they diagnosed her mom too.

And the mom and the girl read everything they could find, which really wasn’t very much.

And they asked a lot of questions.  Some from the doctors, but mostly from people on the internet who had this Rare Disease too.

They learned a lot.  They also learned there was a lot to learn.

They learned about cancer risks, and how very high they are.

They learned about screening tests.

They met lots of new doctors.  Some were super awesome, and others were super awful.

They fired the awful ones, and kept the awesome ones.

The doctors sent them for tests, and screenings, and blood draws, and all sorts of poking and prodding.

At the beginning it was pretty much all they had time for.

the girl who is always there

The girl had lots of surgeries, and lost her thyroid, and then they called her a “previvor” because they said she got it out just in time before it was cancer.

The mom, she had a bunch of surgeries too.  In one they found cancer.  But she was called a “survivor” because it was all gone.  (Thanks to the girl who got diagnosed first and saved her life.)

The girl and her mom ran from doctor to doctor.  They sat in traffic for forever.  They stayed in hospitals and had surgeries, and tests.  Everyone treated them kind of strange.  Like they were aliens or something.  Their condition was so rare that hardly any doctors even understood what they were supposed to do.

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Over time the girl and her mom got a better idea of what really mattered and what didn’t.  They started to be more assertive about doctors, and schedules and planning.  They started to say, “not right now,” sometimes, knowing that a few weeks wouldn’t matter, but a few months might.

The girl and her mom talked a lot about Cowden’s Syndrome.  They talked a lot about Rare Diseases.  Sometimes they were really angry.  Sometimes they were sad, and other times they were grateful.  They saw what some other people with Rare Diseases went through.

The girl and her mom had LOTS of long talks, real talks about tumors, and tests, and cancer, and life.

They worked on some things separately and some things together.  But they agreed to get busy living.

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That didn’t mean they could ignore the seemingly endless doctors appointments.  They all had to be done.  It meant they could schedule smarter.  It meant they would talk about what symptoms had to be addressed right now and which ones could wait.  It meant they had to get really good at communicating.

This isn’t always so easy since the girl is almost a teenager, but they are getting pretty good at it.

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The girl had 4 surgeries this year, some more major than others, but she spent lots of time recovering.  And she learned that she liked to be busy.  She likes to sleep too, but she likes to be busy.  With kids.  Often.  She also likes to be active.  A lot.

The girl and her mom still have this Cowden’s  Syndrome, and sometimes for reasons no one understands, they hurt a lot.  Sometimes the pain makes it hard for one of them to push on.  Sometimes the tired almost feels like they can’t go on.

But the girl and her mom, they push each other.  They push each other to press on because laying down and giving up is not an option.

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Their days are long.  The mom works full-time.  The girl goes to 7th grade and makes high honor roll.

Their afternoons are full of drama club, the girl’s love of theatre, and lots of swim practice.  The days are often 13 hours or more of constant motion.

The girl and her mom, they decided that they might have a Rare Disease, but it definitely wasn’t going to “have” them.

So they decided that whatever comes their way, they are going to be active, healthy, strong, fueled with nutritious food, and built of muscle.  This way if Cowden’s punches, they will punch back harder.

Sometimes the mom wonders if life would have been different without the girl.  The mom wonders if alone she would have been able to push on.

But she doesn’t have to wonder.  Because they have each other.  And, because this weekend they spent 3 days at a swim meet.  And the girl knocked major time off her events.

And, when they came home, the daddy, who is the glue that holds them together, had warm chicken, and rice and vegetables, the healthy fuel  – all ready.

And the mom and the girl were so grateful.  For each other.  For the desire to fight.  For the strength from good food, and faith, and the love of a dad who backs them up every step of the way.

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And as the mom drove the girl to youth group at their church, they talked, about the swimming.  And about the fundraiser they are planning. So that Rare Diseases scarier than theirs get some attention.  “For the Babies,” and so that there can be research for this Cowden’s Syndrome.  So that maybe it can get stopped in its tracks.

And as the mom walked home enjoying the fresh crisp air of Fall she was filled with gratitude.

For this story of BEATINGCOWDENS has only just begun.  And each chapter holds more promise than the next…

“She’s so unusual…” and Other Ironies

This is quite a garble of thoughts… good luck!

** This blog was written over 2 days.  The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**

I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?”  Sometimes I find that question to be the biggest irony.  I struggle often, and deeply.  The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.

But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”

everyone you meet

So often my writing is where I work it out.  I type.  I think.  I read and reread.  And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need.  And when I am unsure, and it just doesn’t sound right.  I wait.  Just like I advise people to think before they speak, “Is it true? Is it kind?  Is it necessary?”  I try to think before I publish.  So last night I sat wrestling with this.  And I never hit publish.

From “Corner of the Sky,” Pippin soundtrack

Everything has its season
Everything has its time
Show me a reason and I’ll soon show you a rhyme
Cats fit on the windowsill
Children fit in the snow
So why do I feel I don’t fit in anywhere I go?

So again we hear, “That’s really unusual.”  “I’ve never seen that before.”  “Typically…”  And I chuckle, in frustration and in the irony of it all.

This time it was at the dentist.  Meghan felt something in the back of her mouth.  An X-ray revealed an impacted wisdom tooth.  She’ll be 12 next month.  The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm.  Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.

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This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy.  Who really knows where that will lead?

I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density.  My next phone call needs to be to the vascular surgeon.  He had some success with the right leg in February.  The left leg is in dire need now.  That is as soon as I can settle the errors on the anesthesia bill.

The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk.  Meghan and I both need to be scheduled.

I just finished completing the papers for her medication for the 2015-2016 school year.  They are copied, one is filed, and one is set to be mailed Monday.

We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser.  We’ve got some neat ideas.  It passes the time.

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For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,”  and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age.  One day we will take her to California for the Global Genes Advocacy Summit.  One day her vision of a denim ribbon necklace will come to fruition.  One day.  But not this year.  Because this year I am trying to schedule vascular surgery that weekend.  Because we have to prioritize.  Right?

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I have set some fitness goals this summer.  I am setting a 10,000 step a day minimum.  I am aiming for at least 5 miles a day.  My dog is in the cross-fire of this goal.  She is my walking partner.  Because she likes to walk – but maybe not quite that far- and she can’t really say no.

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I am always struck by the ironies in life.  I am stronger than I have been in years.  In many ways I am healthier.  I have found Isagenix, and I feel better.  Stronger.  More resilient. More able to cope with life’s obstacles.

Which is good.  Because life has a tendency to be really isolating.

I suppose we all feel that way sometimes.  And many of us feel that way most of the time.  But, sometimes that is little consolation.

I am grateful not to fit in with the Moms of really sick kids.  I don’t envy them at all.

But, I can’t find a spot with the Moms of mostly healthy kids either.  Unless I don’t talk much.

Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.

I want to spend time with people my own age.  I have lots and lots of people I like, but not too many friends to get together with.  Sometimes I wonder what it would be like to just get together.  And chat.  Maybe over lunch, or dinner, or drinks.  Or maybe have a barbecue, or even a night with other couples.  Where everyone socializes.  And no one is overly worried about anything.  But we end up declining the few invitation we get because something always seems to be in the way.

This life is isolating.  The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with.  And I get it.  And it doesn’t make me mad.  Because it is what it needs to be right now.  And there are friends I talk to and text with.

Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that.  What I write here is a simple representation of facts that are.  They just are.  And maybe one day they won’t be.  But, I have already learned not to wish life away, not even the uncomfortable parts.

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But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom.  I crave careless, schedule free days.  I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.

Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere.  Somewhere with an end I can not see.  There are stops along the way to make us stronger, wiser, and more patient.  There are lessons on empathy and compassion to be learned.  There are experiences that will turn us into the people we were meant to be.  The road is long and winding.  Sometimes the climb is tough.  But, but the view, when you really stop and look, is amazing…

Rivers belong where they can ramble
Eagles belong where they can fly
I’ve got to be where my spirit can run free
Got to find my corner of the sky…

I ended last night feeling lonely, and lost.  The song from Pippin had been in my head all day, resurrected from memories of ages ago.  Yet, I couldn’t shake it.  Where do I go?

This morning Meghan was well.  She woke up well, and early enough to make a two-hour morning swim practice, which she completed.  I had time to walk a few miles near the pool.  The sun was beautiful, and the air wasn’t quite that warm yet.  There were birds singing happily, and flowers to appreciate.

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After swim we made it to church.  It had been a few weeks since we were able to get ourselves there.

And in the bulletin I was met with a quote,

“I know I cannot enter all you feel

nor bear with you the burden of your pain

I can but offer what my love does give – 

The strength of caring, the warmth of one who seeks to understand.

This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman

There was a basket of rocks where we were instructed to take one to represent us.  The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ.  Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.  

We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts.  As I chose mine my eyes were full of tears.  Not of sadness for those people, but of the promise that they are also enveloped in the love of God.  My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water.  And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.

The closing hymn (words and music by Marty Haugen, 1987) began like this;

“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”

And the idea that we are here to “Bear one another’s burdens,” permeated my heart.

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I am not “UP” by my doing at all.  I treat my body well.  I treat my mind well.  And I allow my soul to be cared for.

My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God.  That all things are not mine to know, and that through His grace alone we have the strength to remain,

“BEATINGCOWDENS!”

Appreciating the Rainbow AND the Storm

Let’s be real.  Plain.  Honest.  Real.

Sometimes we all want to throw our hands up.  Sometimes we want to quit.  Sometimes we want to hide in the closet or under the table alone.  For a long time.  Because EVERYONE HAS SOMETHING….

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No one’s life is easy.  The trick for me is realizing that and moving on.

Yep, some days I throw a fit right here in my house.  Some days I am sad and overwhelmed.  Some days I even cry, like here (http://wp.me/p2qi4v-10g)

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But, the rule is about 15 minutes.  I am allowed to have a pity party for about 15 minutes.  (Sometimes that 15 minutes happens again, and again – but not usually.)  Because then, I have to put on my big girl panties and make it work.

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We play a lot of games of perspective here.  We work on looking at things another way.  “Flipping it…”  so to speak, to try to get through.

The end of school is a crazy time for us.  It’s supposed to be a time to rest, and unwind.  But, really,  it’s just shifting gears. Most of our doctors keep us on a “Six month leash,” so we do our best to schedule one round the very beginning of July.  This way if anyone needs anything else there is time before school starts again.  The other cycle is distributed around February vacation and school holidays.  The only problem with this is it grossly limits the number of ACTUAL holidays there are in our lives.  There is a good deal of “Go, go, go…”

perspective

Despite our occasional “preteen issues”  my daughter is insanely easy to please.  She wants to swim.  She wants to act.  She wants to read.  She wants to watch tv.  She wants to socialize with children  preteens who are nice to be around.  She wants to eat good, safe food, (cooked by her father not me!)

What she’d prefer not to do is sit.  In the car.  On the BQE.  On the LIE.  In the waiting room.  In the exam room.  Over, and over and over.  Yet, still she handles it gracefully.  She packs her own bag with a variety of things to occupy her time, and some snacks too.  She really does not complain. (Except maybe if there’s a needle…)

What I try to do is spare her some appointments any chance I get.  So when mine come up I try to leave her behind, and that’s what I did yesterday and today.

See, between us, there will be 15 appointments in two weeks, ending this Thursday.

This morning I made my 3rd trip to Manhattan in the last 7 days, but yesterday and today I drove alone.  Meghan was tucked away at camp.  Happy as could be.

I sat in the car, alone.  The 20 or so miles never take less than an hour, so the luxury of satellite radio, and my green tea, (plus and e+Shot when I need it) are all mine to savor as we inch along.

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I noticed today I was very calm.  This life, this Cowden’s Syndrome life, is overwhelming, monotonous, and sometimes very stressful.  But, it’s our life. Not glad by any means, but grateful that this load has been bearable thus far.

Some of our doctors could stand to be replaced, but many are stellar.

We are looked at so carefully all the time, that the chances of us missing something important have drastically decreased.

We have real life conversations, about real life problems, and we handle them with A LOT of humor.

We have a home that is full of love, and a witty, intelligent, young lady growing here.

We have two steady jobs.

We are able to vacation, and enjoy a few extras along the way.

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We have become adept at navigating the bumpy road as a unit, not just Meghan and I, but her Dad as well.  We are a team of three.

We have found nutritional products that keep us energized and strong as we brave the storms.

We are often dubbed the “healthiest looking sick people.”  A comment that always makes me smile.

Some people like to use the word “blessed.”  I have some trouble with that.  If you are the person amidst terrible tragedy, are you then to feel you are not “blessed?” I may have a few questions for God, but the God I believe in doesn’t work that way.

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Grateful – feeling or showing an appreciation of kindness; thankful

Now I do believe that there is always room for gratitude.  There is ALWAYS something to be thankful for.  For us, there is OFTEN a LOT to be thankful for.

Gratitude is not about always being happy, and life always being perfect.

“Gratitude consists of being more aware of what you have, than what you don’t” – Unknown

Even as we journey daily BEATINGCOWDENS, I am striving for an “attitude of gratitude,”  for myself and my own sanity, but also for my daughter, who watches and learns from breath I take.

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Mortality

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The awareness that one day we’re not going to walk this earth anymore.

Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.

We face this reality at different points in our lives.  Some are frighteningly young, and others are blissfully old.  But, eventually, that awareness either creeps in or hits us like a speeding train.  (Figuratively, or course.)

In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.

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For me, my solace, my comfort, and my focus, come from my faith.  My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.

Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.

As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young.  (young for her, and for me too!) She got it.  She found clarity, but it was a few tough months.  And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.

I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer.  But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality.  I was 10 years younger than Mom was at the time of her diagnosis.  I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior.  When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.

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And there was reality.  Unable to ignore.  Cancer had lived within me.  Could it live again?  Would it?  When?  Why was I going to be OK when so many others were not?  Was I going to really be OK?  What if they missed it, something bigger?

I was fortunate.  Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer.  I needed no treatment, no medication.  But, my status had changed.  In the eyes of the doctors, I was now an even greater risk.  Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed.  The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk.  A significant risk.

Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages.  An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age.  The things we celebrate…

My Cowden’s Syndrome people are known to me mostly through the internet.  We live across the country and across the globe.  We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer.  While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits.  There is that “Sword of Damocles” hanging above our heads.  There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry.  We stare at our own mortality each time we look in the mirror.

We have an extra bond when it connects to our children.  A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality.  We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore.  We have gently answered questions about family, and future, that have no real answers to date.  We ache for them.  We wish to take it all away.  We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.

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Mortality will bind you, and if you’re not careful it can blind you.  That is why there are support groups, for cancer patients, and others who have come close to losing their lives.

This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.

I will protect their privacy here, and tell their story as generically as I can.

I connected with Alan, about 6 weeks after my father died.  Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps.  The award was never granted, and I wanted to pursue it on his behalf.  So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006.  I wanted to know who remembered him, and his story.

Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.

My Dad, the "Irish Marine"
My Dad, the “Irish Marine”

 

 

I sent 20 letters out.  EVERY SINGLE MARINE responded to me.  EVERY ONE.  Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences.  Many shared some funny anecdotes.  And as hard as I’m sure it was, they all connected with me.

I had heard about the Brotherhood of the Marine Corps.  I could not have fathomed the depth of that bond.  One after another, they all left me with the same heartfelt sentiment.  “You are the daughter of our brother.  We will help you always in whatever you need.”

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Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned.  My Dad battled his own demons for many years before our relationship began to form.  But the offers of these Marines were sincere, and genuine.

Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries.  In the end, we lost the battle on a technicality.  Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.”  The letter was cold.  The case was closed.

We lost the Purple Heart but gained so much more.
We lost the Purple Heart but gained so much more.

I was sad, mad, angry and disappointed.  But I was so grateful for the Marines who wrote letters of support.  I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result.  I wanted this for him, because he never fought for it himself.

And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me.  He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.

So, this weekend I headed to West Virginia to thank him myself.  I met a group of Vietnam Era Marines, several of whom had served with my father.  I watched them together, in awe an amazement.  I was welcomed into their group with instant acceptance.  And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told.  Surely a contrast to the realities they had faced as young men years ago.  But, the bond between them was unbreakable.  There indeed was the Brotherhood of the Marines, but there was something else.

Mortality.

They faced it in the most horrendous of ways.  They lived it daily.  They buried their brothers.  They knew their return home was not a guarantee.

And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life.  As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”

I was among a group of people who had faced their own mortality almost a half century ago.  And they have a bond that can not be explained.  It is amazing.

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And among the most amazing to me was the woman I met.  She was not local either, but she, like I, had traveled for this celebration.  It was not her first time.  She had been around for almost 10 years.  About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with.  She had never met her father, but here were father figures galore ready to embrace her.  And they did.

A bit ago her father’s diary surfaced from his time in Vietnam.  She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily.  His diary ends with, “When will it be me?”

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Once you have looked your own mortality square in the eye, you can not walk away the same person.

But, it is up to you what you do with the rest of your life.

As for me, I choose bonding with people who “get it,” be they old friends or new.

I choose focusing on what we can do, not what we can’t.

I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.

Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.

As for us, in this house, we choose to remain focused on

BEATINGCOWDENS,

WHILE CELEBRATING ALONG THE WAY.

 

Reflections on Mother’s Day – from a “Rare Disease” perspective

Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain.  I’ve said this before, and I will say again, it is a blessing and a curse.  It is a good thing to celebrate accomplishments, and the anniversaries of such things.  It is dangerous territory to recall to be caught up in the negative aspects of any day.  By doing so you give it power.  And, if you are not careful you give it power over you.

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It is a dangerous road to walk.  I have done many miles on it.  And my brain does not differentiate the “good” dates and the “bad” ones.  I remember them all.  The problem is, some fill my heart with gratitude and joy, while others seem to provoke anxiety unceasing – warranted or not.

I have never been a fan of “Hallmark” holidays.  Valentine’s Day, even after I found the love of my life, has never held any appeal.  Mother’s Day and Father’s Day don’t do much for me either.  Before you jump on me for not loving my parents, I want to share part of an interesting article I read on the history of Mother’s Day.

From:  Mother’s Day Turns 100: Its Surprisingly Dark History

“For Jarvis it was a day where you’d go home to spend time with your mother and thank her for all that she did,” West Virginia Wesleyan’s Antolini, who wrote “Memorializing Motherhood: Anna Jarvis and the Defense of Her Mother’s Day” as her Ph.D. dissertation, said in a previous interview.

“It wasn’t to celebrate all mothers. It was to celebrate the best mother you’ve ever known—your mother—as a son or a daughter.” That’s why Jarvis stressed the singular “Mother’s Day,” rather than the plural “Mothers’ Day,” Antolini explained.

But Jarvis’s success soon turned to failure, at least in her own eyes.

self love

Even Anna Jarvis did not intend the holiday as it has become.

I have epic amounts to be grateful for.  And I am.  Every day.  I think that’s why the pressure of having it all jammed into one day confuses me and stresses me out a bit.

In church we were taught, “Honor thy father and thy mother…”  I believe the meaning was every day.

So yesterday I needed to do some soul-searching.  And I think I figured a lot out.

I have a tough as nails mother.  She is the strongest woman I know.  Not a day of my life goes by that I am not grateful to her, and for her.  And I try not to let too many days go by without telling her so.  Life has taught some tough lessons, and sent some reminders about how fleeting it can be.

One of the many lessons I learned from Mom
One of the many lessons I learned from Mom

I have two grandmothers on this earth.  One I had the privilege to grow up with, and even though the recent years have been cruel to her memory, my memories of her, and of her love, penetrate my soul.

I have another grandmother, a gift to me 27 years ago, who inherited me as a teenager and allowed herself to love me.  I am so grateful for that love.

And my grandmother Gen who left for heaven in October, whose smile I can see, and whose laughter I can hear… her memory warms my heart.

I am so very thankful I did not wait to acknowledge them only once a year.

happy life

My girl is recovering from surgery.  On my couch.  In pain.  Feisty.  Looking to move.  Bored.  There would be no grand family celebrations yesterday.  My husband was fixing our deck that is literally falling apart.  A labor of love – and safety.  I stopped in for a quick visit to Mom and one Grandma.

I reflected about Mother’s Day a year ago.  Spent in the pediatric unit at RUMC.  Scared out of my mind.  Not knowing what we were up against.

Then I thought about Mother’s Day 2008.  A few days after the tonsils and adenoids came out.

Or Mother’s Day 2012, as I awaited my hysterectomy, a few weeks after my double mastectomy.

Then I thought about my friends.  The ones who have lost their moms way too early.

And the others, whose hearts yearn to be a mother, or those who ache to have larger families than they do.

My heart aches for those who have lived through the unthinkable, and have lost their own children.

Why so much pressure put on one day?

Wouldn’t it just be easier if we celebrated our Moms every day?  Instead of waiting for one day?

I know I may have an unpopular idea here, but so many unconventional things work for us.

I would never claim our lives to be “harder” or “easier” than anyone else’s.  I’m not that kind of fool.  But I will dare to say that maybe raising a chronically ill child makes it “different.”  Maybe facing life with two rare genetic diseases in the family makes me think of things in a slightly unorthodox way.

yesterday

I stick a note in my 6th grader’s lunch just about every day.  And I will until she tells me to stop.  I will remind her in as many ways as I can, of my love for her every day.

Life is scary.  Our lives are scary.  Wednesday some machines, and a very smart doctor breathed for her, for over 2 hours.  This is not a rare occurrence.  This is something that goes on regularly, for one of us.  But, they told me she was, “stable and strong,” and in those words were the best gift I could ask for.

Mother’s Day is every day.  From mother to child, and child to mother, and aunt to niece and grandparent to grandchild.  Not in the, “buy me lavish gifts or send me to the spa” sense.  But, in the, “I’m really lucky to have you.  Right now.  Today.  and thanks.  For that thing you do.  For that smile.  For that hug.  For calling me.  For calling me out. For driving me to the store.  To school.  To practice.  For driving me insane.  For making a mess.  For sometimes cleaning it up.  For sitting by my hospital bed.  For getting me ginger ale.  For helping me walk.  For making me laugh.  For never giving up on me.  For understanding I won’t be here forever.  For being my cheerleader.  For supporting me.  For listening to me.  For shutting up.  For saying just the right thing. For explaining the math.  For butterfly kisses.”

never lose hope

FullSizeRender (2)

Mother’s Day in our house may be low on pomp and circumstance, but it’s high on all things that matter.  Right now we’re nursing a recovery.  And it’s coming along, thank you very much.  We are incredibly proficient at this.

And as Mother’s Day 2015 drew to a close, and as we ate our gluten-free pancakes for dinner together, I was struck with the thought that I would not have it any other way.

survival

Wrong list…corrected and redirected!

It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years.

The life changing diagnoses of Meghan and I and the correlating surgeries and appointments. just about took control there for a while.

And Felix studied for and ultimately obtained his electrical license through the drama, and extensive, ridiculous hiccups in the process.

It all just blurred in and we never properly celebrated that accomplishment.

Meg changed schools.  Well, twice now.

We changed churches.

And the car accident, and the back trauma.

The rotted bay window, and the pool with the hole in the liner.

The loss of my father after a brief, battle with pancreatic cancer that had life changing ripple effects everywhere.

I actually sat down to write a list at one point.  Maybe I felt, albeit temporarily, the need to justify the un-returned phone calls, the missed dates with friends, the chaos shoved behind closet doors, and the overarching feeling of disorder in my life.  I wanted a way to explain why I felt like I was existing, not living.  Why every weekend was faced with catching up, and why we were missing each other.  I wanted to explain to the world how I was nutritionally healthier and stronger than ever before, and excited about my new products, but I was/am struggling to get out of my own way.

But this year has served up some intense wake up calls and I am trying to give them my full attention.  Because if any reality resonates clear it is the one that there is no guarantee of tomorrow on this earth.

I am not trying to be morbid.  Quite the contrary actually.

It is that very realization that caused me to shred that list I was making.  It’s counterproductive to dwell.  We must press forward anyway.  So why stay stuck in the past?

lion-king-the-past

There is a point in your life where you have to stop.  And look around.  And focus on the blessings around you.  This paradigm shift, while far from perfected, is a work in progress.

We have taken steps to transform the house, even if that stands in the way of clearing off the credit card bills.  Because, we are not extravagant, and never will be, but living in a neat, clean, organized house, when done well, is easier to maintain, and therefore an investment in our time together

We have family.  And lots of it.  At 40 years old, I can boast 3 grandmothers and a grandfather.  I am becoming more aware each day of the depth of the value of those relationships.  In addition to those 4 great -grandparents, Meghan has 4 grandparents of her own.   I am beyond thrilled that Meghan, now 11, has had the opportunity to have created life long memories with all of them.

And sometimes it is within thoughts of those closest to us, that we remember what is the most important.

remember who you are

 

And if I really remember who I am, I have to speak of my grandparents, most especially today Mom’s parents.

Early in my life, when things were jostled around and life was uncertain, they were there.  We lived in the first floor of their 2 family for the most formative years.  They fed us breakfast and met us after school.  They took us to sporting events and school activities while Mom worked 2 jobs.  They were just always THERE.

And Pop was there to fix things, and Grandma to play cards and cook with.

There were summers in Ocean City, New Jersey – the best summers of my life.

There was a whirlwind trip to Disney, and so many more adventures.

veterans day pop and gigi

I remember them as a young child, watching them.  They never separated, even for a few minutes, without a kiss goodbye and an, “I love you.”  This practice, perhaps formed after a lengthy service in WWII, and a full career in the FDNY seemed rooted in their deep understanding that we need to appreciate each other here.  Now.

And when we moved into Mom and Ken’s house there was the summer Pop and Grandpa Al sided the house.

And in my own house the woodwork.  The beautiful labor of love that is each piece of trim, each windowsill, each doorframe.  In his 80s when I bought my house Pop trimmed each piece, and even helped Felix put in the front door.  He shared his craft with my husband, and did so with patience and ease.

So much of the last 40 years of my life revolve around Grandma and Pop.

photo 2 (1)

Never a task too difficult.  Never say no.  Always giving.  Always sharing.  Always loving.

When I think about my list that I had started to write, and then I think about them, I get a bit embarrassed.

Born in 1919 and 1920 they have seen more changes in their lifetime than any other generation.  They lived through the Great Depression, and participated in World War II.  They spent years apart, in touch by letter, only to marry a few weeks after Pop’s return in December 1945.

They built a family, my Mom and my Uncle, and the family branched out.

Pop worked in the Fire Department, and at Zion.  Grandma took care of everything else so that there was never a thing out of place.

During their life transformations like – no phone to cell phones, and no TV to HD flat screens, and so many more have happened and they persevere.  Pop Emails and surfs the internet, and even carries a cell phone – though it’s rarely on!

Times have changed and things slow down a bit.  But it’s still a huge highlight to stop in for a visit and chat.

And when he can, Felix still picks Pop’s brain for suggestions of things he’s about to try.

All my life I remember them doing.  For everyone.  All the time.  They are the ultimate lesson in “pay it forward.”  They are for me the ultimate reminder of those vows we make before God and family and friends on the day we marry.  Regardless of the wording used, the sentiment is the same.  They promised to love each other, in good times and bad, in times when there was a lot, and in times there wasn’t, in times of sickness and in health, and to stand by each other for as long as God gives them life together.

Love my Grandparents!
Love my Grandparents!
Christmas 2009
Christmas 2009
Grandma's 90th birthday on 2010
Grandma’s 90th birthday on 2010
At Pop's 90th birthday in 2009
At Pop’s 90th birthday in 2009

And even in the toughest hours, they make it look easy.

That is almost 69 years of marriage as God intended it.

There are so many things I share.  And there are some that just aren’t to be shared.  But make no mistake about this.

I’ve  learned how to be a better person, and a better Christian from my grandparents.  I learned how to be a better wife, from my grandparents.

This doesn’t detract in any way from the love of all the other influential adults in my life, including my own parents.  We learn different things from different people at every place in our lives.

But today, it’s about Grandma and Pop.  And how their selflessness and pure love never cease to amaze me.

I pray that though all adversity, my husband and I may set the same example for our daughter.

We are deeply, thoroughly, and completely blessed.

And when making lists its far best to make lists of your blessings than your struggles.

billy-graham-quote-our-days-are-numbered-one-of-the-primary-goals-in

 

 

These three remain….

these three remain

She walked away today.  She broke the rules.  She updated the plan.  On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses.  The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.

That didn’t last long… You only get a moment or two to pull it together.  Then there was some really rotten cafeteria food, and WAITING.

They took her in at 3.  Three and a half hours after she was scheduled.  She was tired, and hungry.  And more grown up than I am at 3 PM when I haven’t eaten.

What a whirlwind!  Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed.  Stupid Cowden’s Syndrome.  Makes people quick to pull out whatever seems to be misbehaving.  And (SIGH) they are usually right.

So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while.  I thought there was no way it could stand in the way.  The surgery was scheduled.  She was ready.  The throat clearing has reached epic levels.

Faith.

faith

Faith that it was going to be fine.  Initially faith that the storm would pass.  Faith that we would arrive on time to an early surgery Thursday morning.

Then, as happens so often I was reminded that FAITH, is not about me.  It’s not about my terms, or my time, or my way.  FAITH is knowing, trusting, believing. that God will provide what we need.  Whether it fits my plan or not.

So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.

HOPE

Rare_Disease_Day_Logo_Hope_

So much talk about HOPE this month.  Rare Disease Day, and “HOPE – It’s in our genes.”  Hope became necessary.  The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in.  (HEY, I never claimed to be perfect!)

Back and forth to the surgical team, to the social worker, the secretaries.  Pleading.  Help us.  Hotel rooms that were available running several hundred dollars.  Offers from loving people to pay the bill.  But in the end money wouldn’t have stopped us.  We would have paid whatever we needed.  Because we had to be here.  Right here.  Right now.

So finally around 2 O’Clock on Weds. the call came.  “We can put you up at the Ronald McDonald House for the night.”  The fee – incredibly reasonable.  The location- perfect.  The reality – it was time to pack us up and be out of the house by 8.

Packing to take Meghan away is an adventure.  It’s not the electronics, or the “stuff” but rather the food.  Not even a major hospital can safely prepare Gluten, Dairy, Soy free food.  So there has to be a cooler.  Dad made fried chicken and plantains.  I picked up a pound of a Boar’s Head staple.  Cookies, granola, ginger ale, and other necessities.  Showers for all.  And Grandpa picked us up at 8.

We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time.  I have to admit I was worried.  Really worried about what I would find through the doors.  But what I found was… love.

s

love-inspirational-daily

I had heard of “The Ronald McDonald House- The house that love built.”  But I never gave it any thought.

Ronald McDonald House

I have a new charity on my favorite list.

We were welcomed – almost embraced by love and kindness.  There was a nonjudgmental compassion the radiated out of every staff member.  We were given keys to our rooms, and a tour with the rules of the “house.”  We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room.  And, after she was given a backpack – with a special monkey, and a monkey blanket.

And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket.  Her grateful smile. My heart – full of love in this house.

Our room was on the 11th floor.  Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic.  And there was the most beautiful view.

Lobby
Lobby
Lobby
Lobby
Our Room
Our Room
View out the window
View out the window

And as we each found our way last night into our own level of sleep, there was LOVE.  Everywhere in the room.

We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.

View out the window on this "Beautiful Day"
View out the window on this “Beautiful Day”
Waiting for surgery with the new monkey from the bag last night!
Waiting for surgery with the new monkey from the bag last night!

By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.

A beautiful chaplain met us this morning, and clearly spoke Meghan’s language.  She compared God to a loyal dog… always there – forever understanding of our needs.

The doctors took extra time with someone else’s baby this morning.  I am glad they have that level of compassion.  I am glad they take their time.

Now they need to take their time with mine.

The last status update came 15 minutes ago.  They only began around 3:40.  Prep took a while.  She is stable, but its slow going.  What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules?  Why make it easy.

Thankfully – she has some very special guardian angels on the case today.  And the prayers of countless others.

In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”

More to follow as soon as I can…

Freedom IS NOT Free!

When I taught Social Studies I most enjoyed the curriculum that allowed me to teach about the United States.  It made me sad on Friday to overhear conversations about this upcoming weekend, and never once feel there was an understanding of Veteran’s Day.  When I was a fifth grade teacher the children wrote about their “Rights and Responsibilities” as American citizens.  That was a long time ago.

I was raised to answer the question, “Where are you from?”  with, “The United States.”  Growing up, that aggravated more than one person who was looking to learn where my ancestors had traveled from to arrive in America.

Precise language.  They learned to ask the question they wanted to know the answer to, or not to ask.

veterans day 4

I am the proud daughter of a Vietnam Veteran, and the grateful granddaughter to 3 WWII veterans.  Although 2 of my grandfathers are no longer here with us in body – their spirits remain strong in my soul.

All of the men I mentioned served in war.  All of them returned home to us.  All of them shaped my life and helped me become the woman I am today.

veterans day pop thompson

Pop T. came home after serving in Iwo Jima, to raise a family of 9 – 8 boys and a girl.  Visiting their house as a child was certainly wildly fun.  My father is the oldest child, and my sister and I were the first grandchildren.  We enjoyed time with Pop who had left behind a promising athletic future before his service in the war.  He had time to impart much of his wisdom before he passed in 1993.  My only sadness is for my many cousins that never got to know him the way I did.  There is no denying his legacy.

veterans day ggpa

GGPa came into our lives later when Mom married Ken.  I was 15 years old, and my sister was 18.  Ken wrapped his arms and his heart around both of us, and truly made my world a better place.  At the time his parents, who came to be known to us as GGPa and GGMa had no grandchildren of their own.  I was so flattered that they accepted us and enveloped us with such love.  GGPa is gone over a year now, but in our years together I got to know the definition of “gentleman” through him.  He was a positive influence, a pleasure to be around and a treat to talk to.  He is missed and loved and appreciated.

veterans day pop and gigi

Pop G. is one of the most amazing men I have ever had the pleasure of knowing.  The fact that I will turn 40 next week, and I can recount my day by saying “I spent some time with my grandparents,” in and of itself is amazing.  Not to mention  that they are 93 and 94 – living in the second floor of their own home.  I grew up during my most formative years, in the first floor of that home.  I had the daily love and support of my grandparents.  When I speak of Pop, and the influence he has had, even I am at a loss for words.  His faith dictates how he lives.  He loves God, his family, and all others before himself.  I am so blessed to listen to his stories, and to revel in years of beautiful memories, while still making more!

veterans day dad

And then there is my father.  The free spirit whose love of adventure has guided him down many paths in his life.  We have conversations that always leave me deep in thought.  He has experiences that are broad, from far and wide.  Most recently in the last few years that road led him right back closer to home, and I have been so grateful to have him just around the corner.  My girl has gotten to know him, and always remarks about his smile.  He tells her he smiles because of her.   His genuine heart, and the depth of his love have made him the person he is today – one I am truly glad to have in my life.

There are children who seek desperately one male influence in their lives.  The amount of time I have been afforded with each of these men is a gift.  I will not squander the knowledge, and life lessons I desperately try to soak up like a sponge.

veterans day 3

Each of them saw things I do not dare imagine.  Each of them lived experiences I will never understand.  Each of them sacrificed, time, love, health, and so much more.

I can only imagine that at some point they have all wondered why they got to come home when some of their comrades did not.  And, while I can not ever know the plan – I can, on my knees thank God for returning each of them safely so they could live their lives.

veterans day 1

Not everyone is as fortunate.

I have received a gift too great to squander, too valuable to toss aside, and too personal not to wear it close to my heart each day.  For it is because of them that I am.  It is because of them that I have learned poise, strength, and grace under pressure.  It is because of them that I know to love so deeply.  It is because of them I have been blessed with my daughter, unique, RARE, and determined to change the world.

Stand for the Pledge of Allegiance and the “Star Spangled Banner.”  Think about the words.  Feel them in your heart.  Educate yourself.  Learn about the sacrifices made to make this country.

veterans day 5

You may want to complain that life isn’t perfect.  You may want to complain about the country.  And while I can agree that many things are not as they should be, remember what my grandfather said to me, “The Constitution is an extremely well-written document, the flaws are in its execution.”

And regardless of your political stance on any war ever – support the soldiers.  Those men and women are there out of a selfless love of country.  They are making sacrifices far beyond what we see and what we know.

veterans day 2

Precise language.

I am PROUD to be an AMERICAN, and even prouder to be related to so many who loved this country enough to fight to defend the principles it was founded upon.

Veteran’s Day. November 11.  FREEDOM ISN’T FREE.

veterans day 6

Worn

“Worn”

I’m tired
I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m wornI know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have leftLet me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn….

This has been the summer that… well…

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

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

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

1. Go to the beach.

2. Go to Philadelphia.

Not so hard right?

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

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

Stress1

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

We started today.

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

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

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

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

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

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

beach day 3

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

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

We have a small bag with some beautiful shells.

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

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

beach day 4

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

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

troubles and blessings

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

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

beach day 6

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

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

“Healing Begins”


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

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

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

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

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

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

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

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

This card was created out of her need to "teach" others about Cowden's Syndrome.
This card was created out of her need to “teach” others about Cowden’s Syndrome.

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

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

Stress.  We do what we can to deal.

We use music.  We enjoy time together.

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

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

“Music, … When it hits you, you feel no pain.”

Since Meghan’s surgery last Tuesday, she and her wrapped hand, and foam “Carter’s Block,” have been sleeping in the king size bed with me, while Daddy has slept in the twin in Meghan’s room.

She usually needs a little bit of room, as she isn’t the calmest sleeper, but we knew with the new foam addition, there would be no way the three of us could fit.  So, with Meghan came her pillows, and her iPad.

no sleep

Her iPad has a playlist that she plays through the night when she sleeps.  I always knew it was on, but this past week, as life has made sleep a bit elusive, I have gotten opportunity to listen to this 23 minute segment several times.  Yesterday I looked up the lyrics, and as usual I was in awe of what she had assembled.

In our house we listen mostly to Contemporary Christian music.  We are Christian, yes.  But typically the type that tries to spread the love by example rather than with a Bible in your face.  That being said, the move to Contemporary Christian music evolved after Meghan became old enough to hear, sing, and understand the lyrics, and the DJs on the radio.

I was, on more than one occasion, appalled at the level of exposure my then 5 or 6 year old child had to things I wanted her sheltered from a bit longer.  So, I switched the station.  And I kept it there.

Now, don’t misunderstand,  She is not bound to listen only to Christian music.  She can pretty much listen to whatever she wants.  She has an Itunes account and downloads music of her choosing, with our permission.  And, there are plenty of afternoons you will hear a good Classic Rock station blaring out our car windows.  But, like anything else, my initial changing of the radio station led to conversations.  And I like conversations.

Meghan became aware that many of her friends at school were familiar with other musical artists that she had never heard of.  So, it became practice that every time she brought home the name of an artist or song, as long as it wasn’t overly offensive – we would buy it.  But I loved that our conversations got her looking at lyrics, hearing what she was singing along to, and taking responsibility for her choices.

I know that music is a very personal thing. I will not be the Mom who is in denial, or tries to over regulate.  It will lead to rebellion and there is no need.  I will talk to my daughter regularly about valuing herself, her body, and other people.  We will talk about what lyrics mean.  Then, she will, as preteens do – do as she likes.

But for now- the “sleep” selection on her iPad is a powerful collection of 6 Contemporary Christian songs.

The first is “Stronger” by Mandisa that begins…

“Stronger”

Hey, heard you were up all night
Thinking about how your world ain’t right
And you wonder if things will ever get better
And you’re asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather
Oh, don’t hang your head
It’s gonna end
God’s right there
Even if it’s hard to see Him
I promise you that He still cares
Then, it  moves on to Kutless, “That’s What Faith Can Do”
Anyone can feel the ache
You think it’s more than you can take
But you’re stronger
Stronger than you knowDon’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason
For someone not to tryEverybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright

Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

Followed by “Courageous” by Casting Crowns
Seek justice
Love mercy
Walk humbly with your GodIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handWe were made to be courageous
And we’re taking back the fight
We were made to be courageous
And it starts with us tonight

Fourth up is “Blessings” by Laura Story
We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we’d have faith to believe’
Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It’s not our home
And the last 2 are by a somewhat spunky artist called Francesa Batistelli
“Motion of Mercy”
That’s the motion of mercy
Changing the way and the why we are
That’s the motion of mercy
Moving my heartLiving for the lost
Loving ‘til it hurts
No matter what the cost
Like You loved me first
That’s the motion of mercy
God give me strength to give something for nothing
I wanna be a glimpse of the Kingdom that’s coming soon
And finally – “This is the Stuff”
I lost my keys in the great unknown
And call me please ’cause I can’t find my phone
This is the stuff that drives me crazy
This is the stuff that’s getting to me lately
In the middle of my little mess
I forget how big I’m blessed
This is the stuff that gets under my skin
But I’ve gotta trust You know exactly what You’re doing
Might not be what I would choose
But this the stuff You use…
…So break me of impatience
Conquer my frustrations
I’ve got a new appreciation
It’s not the end of the world…
I know everyone’s taste in music differs greatly, and I do not expect that anyone will listen to all 6 of these.  But I encourage you- choose one.  Any one that speaks to you.
I have been struggling to get to sleep, but I will miss the soothing repetition of some of the most powerful songs I know when the stitches come out tomorrow.  One more night.  Then everyone gets back to their own beds!
music no pain