Light Through the Lens…

I think I blinked, and the calendar changed from October to December.  Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming.  But, I “lost” the fall in a beautiful way.  I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about.  Four years ago I could not have imagined she could keep this schedule.  She battles for it every day and I admire every ounce of her determination.  I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us.  Meghan’s appointments begin late this month.  Mine will overlap, likely culminating in vocal cord surgery.  But, for now, for this moment, I am grateful for this chaos.  The hint of “normalcy” is not to be left unappreciated.

Today though, I blocked out some time.  Today I needed some time to sit in my office and look around.  There are beautiful images on the walls of my office from New York City to Washington state – and places in between.  Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours.  There are thousands of such images on my laptop and several backup drives.  You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum.  Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.

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“A Few Good Men,” has been far more than a movie title in my life.  I was blessed to have 3 grandfathers that shaped who I am.  I am equally blessed to say I have had two fathers mold me into the woman I have become.  My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between.  There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.

My father, well… let’s just say the early years were rocky.

What I know now, but I didn’t know then, clarifies a bunch.  Dad, a Vietnam veteran came home lost.  The earliest years are peppered with memories that don’t leave “the warm fuzzies.”  The years after that hold memories of fun visits.  Dad would come by sometimes.  There were movies, and visits to the park and the zoo.  There were restaurants, and exciting novelties.  But, there was not consistency.  There were chunks of empty time.  There was a lot of wondering.

Contact got more steady in the teenage years, especially after my brother was born.  There were more visits, and more phone calls.  But, history sometimes repeats itself, and there were years that faded away again.

Later, after high school, and probably after college too, there was more.  Maybe I was ready.  Maybe he was.  I’m not sure.  But, slowly and carefully, over years, a relationship began to form.  By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.

After my daughter was born, he started showing up more.  And I liked it.

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Hard times came for Dad, and the restaurant industry finally failed him.  And that low for him, was the point our relationship became solid.  Nothing happens overnight, but he was here.  Close.  Interested.  Available.  He helped pick up Meghan.  He came to birthday parties, and dance recitals, and swim meets.  He came by for Father’s Day and even celebrated a birthday with us.

It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.

“I have PTSD.  Do you know what that is?”

“Yep.  I know.  (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”

He was stunned.  He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder)  He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life.  13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior.  I was able to pick up from a text-book the reasons why he had shied away from our relationship.  I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.”  But, in that moment, hat moment when he said it THAT is where I got him back.

I can’t say I remember the day.  And I may be wrong on the year too.  But, it was sometime around 2009.  Finally, he was working on his own healing.

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And he worked hard.

We spoke more regularly.  Once a week usually.  Sometimes it was his turn.  Most of the time it was mine.  As I struggled through raising a chronically ill child, he became my sounding board.  He was my confidant of all things.  He was where I went to bounce the tough decisions.  Because, life had left him a great listener.  Raising a child with a rare disease, means often having to make really tough choices alone.  When your disease affects only 1 in 200,000 people, experience with it is limited.  When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.

It is hard to hear over and over again that a child is ill.  Especially, when it is your child, or your grandchild, or one you love so much.  I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart.  Dad was the one who could hear it all out.  He heard me without speaking.  He listened attentively.  He offered advice only when I asked, and offered encouragement always.  These were not situations where I just needed my ego stroked.  These were tough conversations to have, and he never ever shied away from one.

He simply would bring me back to reality.  He’d ground me by telling me to use Meghan as my guide.  Check on her health, physically and emotionally.  Focus.  Trust my instincts.  Be able to correct wrong decisions whether they are mine or theirs.  Still now, three years later I find myself aching for those conversations.  She is stronger.  She is tougher.  She is amazing.  But, there are still so many battles to face and so many difficult decisions to make.  That’s when I retreat to my office.  I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think.  I talk the conversation through as if he were here.  Because I know he is.  I just have to listen really carefully.

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Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him.  When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time.  While I could never profess to connect this to the horrors of war, he did.  And I think it allowed him to open up with some of his own stories.

Through those years I heard tales from his mouth I had never known.  I heard of battles, and losses and names of people, and places.  I listened so attentively.  Quietly.  As he had done for me.  Sometimes I even took pen and paper to write down his story.  Because I wanted to hang on every word.  Because you just never know.

I found out Dad was sick when I made that Friday night phone call in October 2013.  His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn.  When I asked him if anyone knew he said he wasn’t too sure.  But, he said, “now you do.”  And he laughed, as only he would at that moment.

I got to the hospital the next morning and we went through the details.  At that point no one knew anything.  Confused doctors was a topic we had spoken about at length.

The 10 weeks that followed were just a long blur.  There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments.  Sometime after that he admitted he couldn’t drive himself.  That was a tough day.  I had already called in my sister, and it was time to reach out to my brother in Texas.  Family meeting.  The “team” assembled.

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And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.

Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him.  No more suffering.  No more PTSD.  Pancreatic cancer at age 65.

I dialed his number for months after.  I still know it in my heart.

I spent the months after he died cleaning out his apartment.  Dad was not a man of many “things.”  His iPhone held no Email, and only one photo.  “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.

As I cleaned I took every single scrap of paper he had ever written on and clipped them together.  I laminated them.  It was to be the only way we would ever “talk” again.  It is Dad’s quotes scattered through this piece.

He loved light.  And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.

Dad was, to our family, and friends, a photographer.  “Tom” would have a camera around his neck at all times.  He took joy out of capturing happiness.  He took pleasure at photographing family events, and sharing his photos with everyone.  As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images.  We sorted out the family shots from the scenery ones.  We put up a sharing site for all those family images in case anyone had never seen them.  And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.

At some point we will organize an art show in his memory.  We will print, and sell his treasures.  We will find a place to donate any profits that will honor his memory.  We will let the world see what he saw.  Dad used that camera lens to showcase the light.  To view the beauty in the world.  Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.

Dad did not leave us rich with money, or objects.  He left us rich with visions and memories.  The former keeps you satiated for a little while.  The latter can keep you fueled forever.

The last gift Dad left for me, was one I did not see coming.  In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart.  I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.

Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior.  I reached out to every Marine in that list, and if they were still alive, they reached back.  Over 20 of them.  45 years later.  I grew up knowing Dad had 7 brothers and a sister.  I had no idea of the Marine brothers scattered around the country.

I have had the pleasure of meeting many of them.  And this past summer I brought Meghan to meet a few too.

Alan was the first to answer my letter.  From West Virginia he called to tell me he remembered crossing time with Dad.  He researched the story I told him about the incident.  He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy.  Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.

My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.

I do not know the book this came from, but I found this among his clippings…

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My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.

He left thousands of photos.  Snipits of his own words, and memories of times that we got it right.

I sometimes always wish that he would answer when I called him on the phone.  But, I know.  I know that he is flying free.  And I know, that while he needn’t be saddled with the cares of this world, that he checks in.  That he is nearby when I need him the most.

So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky.  When she sees the beauty of the world around her.  When she looks for the good. When she keeps her friends list short and neat, I see my Dad.  I feel him.  I know he’s right there for that moment.

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Courtesy of Meghan on a road trip to WV to meet the Marines.  Always being guided by the light…

Only when you love deeply do you feel great loss.  They all hurt.  The oldest to the newest.  I can not change the way I love.  When I love it is with my whole self.  Otherwise, why?

This one hurts differently because it took so long to get it right.  But, I rest with the gratitude that we did get it right.  And once you get it right, if it’s truly right, nothing before that matters anymore.

You may never know the strength you gave to help us remain

#Beatingcowdens

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Semper Fi Daddy, Always.

04/18/48- 12/4/13

Loved.  Missed.  Remembered forever.

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Speechless

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Resting your voice is not like resting your knee, or your shoulder.  Resting your voice is more like resting your heart, or your lungs.

Something is kicking my butt.  And I’m not sure what it is, but I am so not in the mood anymore.

This has been one chaotic stretch.

FInally recovered, mostly from my way too soon implant exchange in August, and my broken toe 2 weeks after, I am battling with trouble in a place I least expected to find it.

This summer I heard, “vocal cord nodules” for the first time, after feeling somewhat hoarse since April.  I was quickly reassured by tons of people that these are “normal” and would resolve if I was careful.  The doctor didn’t say too much, besides directing me to begin vocal therapy and return in three months.

I knew enough to listen when I was told to start therapy, and I did.  Begrudgingly, and convinced it was bogus, I made my way to the recommended therapist.  We got in a few visits before school, and then had to switch to weekly as my schedule just wouldn’t allow more.

For about four sessions I felt utterly ridiculous.  Then I started to “get it.”

I struggled when I started work, and was told to purchase a “tour guide” microphone.  I did, and the small 20 amp speaker with its wireless microphone have been an incredible help.  Despite looking like a frustrated pop singer, I am able to talk longer, and with less strain.  I am learning to speak differently, and in ways that are often unnatural to me, all with the desired end result being to reduce the stress, impact, and inflammation on my vocal cords.

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I saw the doctor for a follow-up on October 11, and I got a very “Cowden’s-like” mixed report.  I was told that the vocal therapy had decreased the inflammation.  (YAY!)  However, the reduction of inflammation makes me a better surgical candidate. (I had really hoped I could just make it go away.)  AND, there was now a new, or newly visible “striking zone lesion” on the other side.  Both of the lesions were not “typical,” and would not resolve alone.  Both lesions appeared to have vascularity to them.  And, the “striking zone lesion” was irregular in shape.

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Despite his 99% comfort that the lesions were benign, I left with instructions to continue therapy, and to plan on having surgery close to the summer to remove the lesions.  I was told for the first time ever, that I would need to practice COMPLETE VOCAL REST for 7 days post operatively, AND for the next 7 days, I would speak approximately 1 minute for every hour.  The next several weeks would entail a slow progression back to my full voice use.  The thought of it completely freaked me out.

At voice therapy, there were conversations about Cowden’s Syndrome, and our tendency towards over-scarring.  The very real possibilities of what excessive scarring would do were discussed in a casual conversation.  By this time I am comfortable, and confident in the therapist.  She is smart, witty, and honest.  She’s real without being painful.  She also cares – about me, as a human, a teacher, a mom and a wife.

So, I had really hard conversations with my husband about the future, and I strengthened my resolve.  I charged my microphone, and I found the voice that exists out of my throat.  I have started to shorten my sentences.  I’m learning.

About 3 weeks ago it started to get worse.  Slowly and steadily worse.  Every day I would do my exercises, and I just couldn’t get the sounds.  My air was becoming a battle.  The inhaler became a part of many days.  I slept as much as I could.  I stayed hydrated and took extra vitamin C.  I ran no fever, but my chest felt full.  My head was pounding.

I stopped using the phone for anything but texting.  That was NOT the turn of events I needed, as I was struggling to keep up with people anyway.

Finally, I went to the urgi-center.  I was told I had “a lot of fluid” in my head.  I changed the allergy medicine.  I took a nasal spray.  I got a short course of antibiotics because it was lingering, even though I had no fever.  I upped the saline, and the steam.

I barely, and I do mean barely, got through the day Friday.

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Saturday I sat at therapy, so frustrated.  She was so patient.  So wonderful.  She told me she had been researching Cowden’s Syndrome, and there wasn’t a lot out there on its connection to the vocal cords.  We had kind of established that even if the Cowden’s didn’t cause the lesions, we still have to proceed knowing my body has Cowden’s and it affects everything.  We can NOT scar the vocal cords.

She had looked at my exams from July and October.  Side by side.  Frame by frame.  And very clearly stating, “I’m not a doctor, but…” I hung on every word.  I processed them with respect.  Some of our best help through the years has come with the premise of “I’m not a doctor, but…”

Vocal rest.  That’s where we’re at right now.  I am supposed to rest my voice when I am not teaching.

This is NOT an easy task.  I’ve been at it for 4 hours now and I may lose my mind.

This is isolation at its worst.

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The lesions won’t heal themselves.  I can just get ready for when I need to heal.  I can prepare for a lifetime of speaking in a way that babies my voice.  I can practice being silent when it is so much the antithesis of my nature.

This time beating cowdens will require patience, strength of mind, and stamina.

It’s messing with me.  But I’ve got this.  I’ve got this.

If you don’t hear from me… try my email.  Or texting.  My typing skills will be improving greatly….

#beatingcowdens

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Set Up Surgery on Safari – check

Last Tuesday, on Meghan’s 13th birthday, we woke early and headed to the airport for what has become an annual family vacation.  Disney World is a “happy place” for all of us.  Despite crowds, and heat, we seem to be able to locate so much magic there.  Plus, it’s not here.

I like it here.  In my house, with my family.  But being “here” in a broader sense means doctors and tests, and appointments and procedures.  And traffic, and waiting.  And bills, and phone calls, and all sorts of obligations that often keep me tied to my desk chair.

In Disney someone produces allergy safe meals for us.  In Disney there is no driving.  In Disney there are fireworks and parades and shows.  While we are in Disney Mom watches the dogs and the house.

Those 8 days designed as a respite.  A safety zone.  A doctor free area.  And we look forward to it every year.

This year was even more special because Meghan brought a friend.  She got to bring a kind, compassionate, witty young lady who had been by her side through some ups and downs the past year.  There is not a long list of people who Meghan trusts enough to take into confidence, and I can’t say that I blame her.  But, this young lady has similar loyalty standards, and held her composure as Meghan threw some tough stuff at her.  Meghan is forced to think about things and process things that are not even remotely acceptable to have to deal with at her age.  Most peers are overwhelmed.  Many shy away.  This young lady did not NEED Meghan as a friend, they CHOSE to be friends.  As different as they are, they compliment each other nicely.  So we set off on our adventure this year as a party of 4.  The Ortegas plus one!

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Once we found our groove, (adding a wheelchair takes finding a balance) we were off and running.  Great food, lots of laughs, and the highs and lows you’d expect from two spunky teenagers.

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I was distracted Friday when my cell phone rang, while we were on the Safari at Animal Kingdom.  I should have seen the NY number and known what was coming.  But, I answered quickly.

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It was my plastic surgeon’s office.  The one who had told me they could fix my implant some time in the spring… well, they were offering me a spot on August 19th.

If you don’t have the back story on this I’ll give you the quick version.  After a double mastectomy in March of 2012, I opted for immediate reconstruction.  I was very pleased.  Then in November of 2012 I was in quite a car accident.  I took a good hit to my totaled Hyundai.  The implants were intact, but likely never quite the same.  By the summer of 2015 I had been experiencing some pain and discomfort on the right.  I went back to my plastic surgeon in November of 2015.  She told me the right implant had fallen a bit, and I should have (non-emergency) surgery to pull it back up.  Except, she was no longer accepting my health insurance.  The year that was had Meghan in the OR I believe 5 times.  I struggled to get the courage to call the new plastic surgeon.  I was annoyed to have to do all this again so soon.  The initial estimate on the implants was 15 years.  This was under 5.  I finally got an appointment with the new plastic surgeon a full year later, in July of 2016.  He concurred that a surgical procedure to “tighten things up” was a good idea, and that I could schedule at my convenience.  So, I tried to get it scheduled for the summer.  Then I tried for October when we have a few days off.  Then I tried for December… and before I knew it I was looking at spring break, almost another year of what had transformed from pain, to just an odd sensation, all the time.

I listened as I was told I could have the date one week away.  I looked around at the animals on the African Safari.  I tried to keep my conversation low enough to make sure the girls, and no one else on the vehicle was following along.  I promised to return the call in an hour.

I hung up and managed to share the story with my husband.  Then I called my Mom.  Then I called the plastic surgeon back.  “Let’s do it.”

So the following Monday was spent ducking away to make phone calls to set up pre-operative appointments.  Because the plane was due to land at midnight Tuesday.  I needed blood drawn, and a physical Wednesday in order to hold the spot.

Tuesday we left Disney.  The step count on my FitBit was over 142,000  I had covered over 62 foot miles.  I was tired, but happy.

We did have a great week, and while I was bothered on some level that the surgical planning creeped in, I am skilled at managing many things from my cell phone.  And, the thought of getting all that straightened out months ahead of schedule was exciting.

Tuesday it rained.  In NY and in Florida.  There was lightning.  There were delays.  Lots of them.  Our plane landed well after 1 am.  I hit my bed hard at 3 and was on the bus to NYC for the lab work by 9.  After battling NYC traffic there and back, I went for the physical.  Passed, and papers faxed to the plastic surgeon by 4:00.  Success.

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Life moves quickly.  We have to keep up.

The call came Thursday to be at the hospital at 6 AM Friday.  While I am not a morning person, only the surgically experienced would realize that is like hitting the jackpot.  It means you’ve got first case.  And that is a giant win.

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There was little time to share the plan with anyone.

Yesterday morning I had bilateral implant repair between 7:30 and 10 AM.  I slept till 1, had some ginger ale and crackers and was home by 2:45.

Last night I laid in my bed catching up on Email and I caught one from Meghan’s endocrinologist.  The thyroid numbers have gone a bit off again.  He wants to play around before repeating labs in 6 weeks.

Medication readjusted.  Again.  Illogical.  Like so many other things.

Apparently #beatingcowdens involves scheduling surgery on an African Safari and readjusting medications hours post-operatively.

We’ve got this.

Thank goodness for our time in the “Happiest Place on Earth.”

 

 

On Your 13th Birthday…

 

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Dear Meghan,

As I sit to write this some time in the middle of the night, I am reminded of the early years, when so many of the middle of the night hours belonged to the two of us.  Yes, Meg, I said YEARS.

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You struggled my girl, but your determination was evident early, like the day the NICU nurse called you feisty.  She was right.  And it has proven to be one of your finest and most valuable attributes.

When I look back on pictures of those early years, it doesn’t seem all that bad.  I guess I never had time or desire to photograph some of those tear-stained days.  And maybe. if it wasn’t for the colicky cry seared into my brain, I might have even come to forget that you considered sleep optional, crying and screaming mandatory, and that carrier pouch a requirement for all things.  At one point we had even taken to calling you a kangaroo baby…

You and your tired Mommy!
                               You and your tired Mommy!

But, I look at the babies in those pouches,  And I think to those mother’s “enjoy it.”  You might find this hard to believe my dear, but there is not a single minute I would change or do over.  Every step along this journey with you has BEEN the journey.  And I have the deepest gratitude that God selected me to be your mother.

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The path hasn’t been easy.  Sometimes it’s been rocky, and a little unsettled.  Other times its been like traveling through fire. On a bicycle.  With no handlebars.  Backwards. But, I think we’ve all found pieces of ourselves we never knew existed, and there is a family bond between you, and me and Daddy that so many envy.  Not for what we’ve done or where we’ve been, but rather the fact that we have done, and continue to do it all together.

At eight years old, you were tossed a diagnosis of a Rare Disorder, a 1 in 200,000 PTEN Mutation called Cowden’s Syndrome, that has leveled many grown adults.  But, by eight years old, you were already seasoned at doctors, OT, PT, and speech.  You’d been there, and were still doing dome of that.  At 8 you were intimately aware of what it meant to spend hours waiting for doctors, and you had a clearer visual of an operating room than anyone should ever have.  So really, in reality, that diagnosis just pushed us in the right direction to continue to help you become who you were meant to be.

It’s rotten to be the “unusual one”  the one with all the risks and the need for that “hyper-vigilant” surveillance.  But, I’m thankful.

See without Dr. Jill to push us to your diagnosis, without all those things falling into place, it’s likely I wouldn’t be here to write this. Your diagnosis led to mine,  and while I am intimately connected with the reality there is no guarantee of tomorrow on this earth for any of us, my heart is sure that you, my angel, my gift, you my dear saved my life.

I watch you with each passing year, and the challenges pile on top of themselves.   And we both sometimes want to stop the presses and scream, “IT’S NOT FAIR” and the top of our lungs.  but then we laugh.  “Fair” is just a silly word anyway.   It’s not the perspective we use.  It’s not worth our time.

You approach this birthday with 17 operating room trips under your belt, and too may ER visits and, tests, and hospitalizations to count. You have had to make decisions, and think thoughts that are beyond the scope of what you should contend with.  But with grace and dignity you proceed, because none of that is what defines who you are.

Grace,. Poise. Strength under pressure.
               Grace. Poise. Strength under pressure.

 

Despite unimaginable pain, you press on.  Your body would not allow for dancing school or soccer.  But the competitor in you was not to be silenced.  Running was out of the question, so now you “fly,” in the water, 11 months a year 4-5 days a week for hours.  You pull energy out of the crevices of your toes to push through when most would curl up and give up.

First season swimming, a few weeks in. Spring 2013
             First season swimming, a few weeks in. Spring 2013
2016 Working on her "fly"
                              2016 Working on your “fly”

You press on in the community, focused to raise the necessary founds the PTEN foundation will need to create our patient database.  But, you will not turn your back on the charity where you began, Global Genes, “for the babies who can’t speak for themselves,” you tell me.  You make flyers, select venues, advertise and collect raffles.   You speak at schools and organizations across the Island who will have you, to raise awareness that rare diseases are everywhere.  For the last 2 Februaries we have celebrated Rare Disease Day with almost 200 people, gathered because you have a mission.

Youngest “Woman of Distinction” recognized in Albany by Senator Lanza in May.  Proudest parents.

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I watch you talk to people and I swell with pride.  When you’re intermittently stuck in that wheelchair you hate, you decided to help the doubters, the starers and those passing judgment.  A simple business card with a phrase you helped create “Cowden’s Syndrome – Rare. Invisible. Real.”  It starts a conversation, or it ends the behavior.  Either way you manage with grace to rise above.

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You take the high road so many times a day.  I know it’s not easy.  And I know there are people in your path every minute determined not to make it easy.  But, truth be told, as we are learning, there are others out there.  There are real people, at swimming, at youth group, at SICTA.  There are real people who are finally recognizing that you are pretty spectacular. And I don’t mean that in a ‘who is better than who’ way.  I mean it in it’s best sense.  Everyone is spectacular in some way.  You just learned it a little early.

As you turn 13 this week, I wish you so many things, from the depths of my heart and soul;

*Never lose the magic.  Ever.

ALWAYS remember THAT feeling.
                                        ALWAYS remember THAT feeling.

*Never compromise yourself for anyone.  Remember that doesn’t mean to be brick wall stubborn.  It means to keep those morals.  Rise above.

*Always remember no matter how wild and crazy the world gets, you’ve got two parents who will love you regardless… and that is a PROMISE.

*Smile, sing, laugh, act, dance, be sarcastic, and sensitive, and guarded and silly, with a healthy touch of humor thrown in.  Do it all always with respect.

*Continue to constantly take every obstacle tossed at you, and it toss it back, or walk past it and move on. When they tell you you can’t, find a way to show them you can.

*Never let anyone make you feel less than.  You, you are enough.  You are always enough.  God said so, and He is smarter.  Trust.

*”Be the change you wish to see in the word.” – Ghandi

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Your teenage years will be a giant path of self-discovery.  It won’t always be smooth.  But nothing is.

Be you, and it will fall into place.  And in the off chance that none of that works, I’m not going anywhere.

I love you from the bottom of my heart.  You truly are the child I was meant to have, and there is NO ONE I’d rather be #beatingcowdens with, than YOU!

Happy 13th Birthday!  You will always remain, “My Most Thankful Thing!”

I love you ALWAYS,

Mom

Thanks for bringing out the best in me. I love you more than you know.
        Thanks for bringing out the best in me. I love you more than you know.

Justifying Our Existence

There was a post that showed up in my news feed this week from http://www.themighty.com.  Read The Secrets of People with Chronic Illness here

I can’t seem to shake some of the thoughts from my head.

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As I write, school ended for the summer 9 days ago.  In those 9 days we have seen 4 doctors between us.  There are 9 more SCHEDULED in the month of July, including a biopsy for Meghan on the 22nd.

And, while I did take some time over the weekend to reconnect with some dear friends, and I have accomplished a few mundane tasks like routine car maintenance, the vast majority of every moment of those 9 days has been spent justifying my existence.

Fortunately, I have enrolled Meghan in a theater camp where she is from 10-4, spending some time with kids her age.  Of course, the wear and tear on her body, even after only 3 days is evident.  She struggles with pain so badly.  On her feet, determined to fit in.  Determined for me not to say too much.  Sometimes I have to let her go.  I have to let her try.  I have to let her decide.  But, it hurts.  It hurts her, and it destroys me to watch her battle with her body.  I watch her put that game face on in the AM, and not take it off until after swim practice follows camp.  No one will ever tell me she is anything but driven.  But, no one would ever know to watch her…

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Usually by this point in the summer my work bag is unpacked, washed and tucked away.  Often my lesson plans for September are mostly framed out.  I am yet to take the list I frantically formed as I packed my room the last day of school out of the bag.

Instead, the yellow legal pad sits near my computer.  I write, and cross out, and rewrite, as I call, obtain records, set appointments, and clarify tests required by various doctors.  I rearrange schedules to allow for coverage for Meghan as I trek to my own appointments at the most inconvenient times.

On the 18th I will meet a new plastic surgeon, as the old one no longer accepts our insurance.  I never imagined needing a new plastic surgeon only 4and 1/2 years post op from the mastectomy, but it seems I do.  I’ll wait until I meet him to elaborate on that…  Sometimes, although not often, I do feel like this…

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I can often count on 4 hours minimum round trip for the 10 mile trek.  Never mind the cost.  We just don’t even add it up.  Instead, we thank God for our jobs and the insurance we do have.

I received a phone call yesterday from a lab that was running insurance information to obtain testing for Meghan requested by one of her doctors.  Except it’s not covered at all.  $16,000 they said.  I, who denies my child nothing politely said, “we’ll find another way”.  And we will.  Because that is just insane.

I’ve sent 3 emails to the office manager of the office doing her procedure on the 22nd.  I simply want to know what date to leave free for the follow-up.  I know there will be one, and I want to plan a few summer adventures in the time that my fish will have to be out of water.  I also asked for the pathology from her December procedure.  For about the 8th time.  Just keep adding checks and dates to the list.

When things get really bad, like with the bills I’m fighting in collections, they get a folder of their own.  The SUPER troubling places, like the mail-order pharmacy, have a notebook.

We do our best to stay upbeat.  We count our blessings regularly.  We know it could be worse.  We know the anguish others suffer far surpasses our daily struggles.  But, no matter how much we focus on a positive attitude, and believe me we do, it does not decrease the pain, both physical and emotional.  The struggle is real.  Whether we like to admit it or not.

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I reached out to our genetecist this week.  Darling man said he would always help, and didn’t want us to waste a trip on him.  I told him I was having trouble with my voice.  I’ve been getting very hoarse for 8 weeks or so.  No infection.  Three allergy meds on board.  But, I do have Cowden’s Syndrome, that tumor growing thing I sometimes forget belongs to me too.  And I have a history in the neck.  A 3.5 pound lipoma in 1988, and multinodular goiter on the thyroid in 1993.  Both removed.  Both benign. But…

He referred me to a head and neck surgeon.  I finally mustered up the courage to block out at least one more day of summer, and call for an appointment.  I was met with the inquisition on the phone.  I never got past the receptionist.

“This doctor is a head and neck SURGEON.”

“Yes, I know he’s a surgeon, I was referred for consulation.”

“Well, he doesn’t just SEE people, you need a diagnosis and a referring doctor.”

“I have both.  C-O-W-D-E-N Syndrome.  A mutation on the PTEN gene that causes benign and malignant tumor growth.  I was referred by my genetecist, also a doctor at your hospital.”

“Well, what tests do you have?  He will want a report, a CD, something…”

Sigh.  I just don’t have the fight in me today. “Ok, you win.   I’ll find someone else.”

“Come back to him when you have a diagnosis.”

 

Whatever.  Just whatever.  Sometimes I get a little tired.

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Thats when I shake it off with a quick walk.

I emailed the genetecist back.  I’ll wait.  Again.

I have this pool in my backyard.  And plenty of people I’d like to reconnect with.  And some lessons I’d like off my plate.  And a book I’d like to read.

I’ll get there.  In the mean time, I’ll be at my computer.  Emailing.  Arguing.  Advocating. Communicating.  Researching.  Justifying my existence, and

 

#Beatingcowdens with whatever it takes.

“Stay Alert! Delays are Possible!”

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I saw the sign Friday, somewhere along the Pennsylvania Turnpike.  I laughed, in spite of myself.

We were headed on a 400 mile road trip to West Virginia, a trip I was making for the second time, and Meghan for the first.  Last weekend in June to celebrate Alan’s birthday.

As we traveled through the hills of PA, I became somewhat accustomed to shrieks of joy, as the landscape at times was utterly breathtaking.  And, there were cows.  Overwhelming for a young city girl, not given too many opportunities to travel out of a small radius.  The camera barely stopped.


I was thinking about the list of things creeping into the month of July already.  There are 8 appointments and a surgery for Meg already scheduled.  I am annoyed, not so much at the surgery, as I am about the time constantly taken to try to stay on top of this cancer -causing, tumor-provoking, life altering nightmare called Cowden’s Syndrome.

Meghan’s next major procedure is Friday July 22nd.  The pathology on that procedure will determine what, if any, delays are possible in the future.

“Stay Alert! Delays are Possible!”

There wasn’t much traffic on the way to West Virginia.  The trip itself took us a little over 7 hours.  We arrived before 9, and blended right into easy conversation on the porch.  Alan, his family, and some friends, welcomed us warmly.  They greeted Meghan as if they had known her for years, and treated me as if I stopped by every few days.  All of this oddly comforting.  In reality I met them for the very first time last June, and Meghan was meeting them that night.

 

 

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img_7548Yet, we had known each other for longer in ways that matter.  These men, most of them, were Marines that had served with my Dad some 45 years ago in the jungles of Vietnam.  These men knew my father during a brief time in his life that undoubtedly changed and shaped the man I later knew.

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Alan was the first to reach back to me when I sent a letter to Dad’s 1st Amtrac Batallion, 3rd Marine Division brothers.  I was, at the time researching an incident that we felt may have warranted a Purple Heart for Dad.  I sent over 20 letters that week in January 2014.  I heard reply from every living Marine I contacted.  EVERY SINGLE ONE.  They spoke to me, and comforted me.  Those who remembered the incident wrote letters of support.  All told me that as the daughter of a Marine I was one of theirs.  I was to call on them as needed.  It seemed surreal.

But Alan stayed in touch.  Close touch.  We spoke, and still speak via text several times a week, and often by phone at least once a week.  As he worked every angle he could for a Purple Heart that not earned in the technicalities of the USMC, we grew in friendship.  And over time I came to realize that the relationship we had built filled a larger hole than any posthumous medal could have.I do not mean ever to saint my father.  Nor do I mean to make excuses for him.  There were some terribly rocky times in my childhood that can not be repaired.  But, we had time to make peace years before he died, and I started to understand a few things.  A few really important things.

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Now, we were in West Virginia, keeping time with 5 Marines who served with Dad.  They were wounded; physically, emotionally, or both.  They shared stories.  They shared PTSD.  They shared tales of failed relationships, and difficult feelings of guilt.  They verbalized what Dad couldn’t.


And Meghan, oh did they take her in!  One by one, as if helping my father make up for lost time, they spoke and laughed and listened.  They got to know her.  They cared.

Saturday morning Alan’s grandson took time out of his day to teach Meghan to shoot a compound bow.  It was something she had always wanted to do, and circumstances had not allowed.  So, here we were in the hills of West Virginia.  And there was her lesson with the bow.  Arrows on target.  Success.

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A few hours later we were on a farm with the Marines.  We rode a “side by side” through the farm and got to take in views we would not have otherwise seen.  Then, Meghan was invited to shoot a rifle.  With a little hesitation she was guided.  And I watched as her tense face turned into a smile.  There were 4 paper targets 100 yards away.  She fired several times and hit paper repeatedly.  First try, “Oddly relaxing,” and successful.

Maybe because we live in the zone of “Stay alert!  Delays Possible!”  that seizing the opportunities as they present themselves is even easier and more logical.  I didn’t shoot a bow or a rifle, so I can’t be sure.  But, she is clearly not shy about learning new things.

The birthday party ballooned to over 50 people in the driveway and garage of this beautiful home.  There was mingling and talking, mostly with people I barely knew.  Meghan found the time to chat with each of the Marines.  She asked questions.  She got answers.  And, in some cases more questions.  But they each took time to speak, honest, and frank, about their experiences, and about her Grandpa.

I stole away some time to lay on the front lawn and appreciate the flags while enjoying the relative quiet of a “busy” street.


Meghan was met with generosity of tangible items, and generosity of kind spirits.  She now has a money clip and some Vietnamese money from the era.  She also has some special paintings, and a walking stick.  The latter two were gifts from “Uncle Moe,” who was a bit older than the rest.  After 3 tours in Vietnam, and 22 years as a US Marine, he had some tales to tell.


When she  asked what she should know about the Marine Corps., she was told “Brotherhood”.  The simplicity and depth of that answer was playing out over the weekend, and it made sense in concept and in real-time.  These “brothers” trained to never leave a man behind.  And in our case, that included his children and grandchildren.
The weekend went too fast, and before it was time to leave we even sneaked in a visit with some pigs down the road.  City girls have to make the most of things when they are around!

 

Preparing to leave on Sunday was harder than logic says it should have been.  But, we had spent the last 2 days enveloped in a Marine Corps “sandwich” of unconditional love and support.  We know now with these Marines there are no “goodbyes,” only “see you soon!”

As we drove I don’t think either of us spoke for at least 75 miles.  The enormity of it all was tough to digest.

She held the walking stick in one hand and the money clip in the other, wanting to make the weekend longer than it had been.

I cry often.  Meghan, not so much.  Yet, both of us were choking a bit.  It was the kind of experience that changes you.  The simple beauty of just fitting in.  Just because.

“Stay Alert! Delays Possible!”

Not just traffic delays, but real life ones too.  As we began the 400 mile trek home we contemplated Monday’s appointment in Manhattan – a quick toss back into reality.


I pondered whether it was right to show Meghan this world, and then take it from her so fast.  But, I knew it was.  It was a part of her.  A part of her history.  A part of her life.  It was something that I do not fully understand, and yet I needed to expose her too as well.

Dad was not a saint.  But, he loved us. Deeply.  There was never a doubt about that.   Even as he began to heal, he often struggled to find ways to express it.  It was a battle in progress, and he was winning.  But, he was called home before he could quite finish.

So, he left it to his “brothers,” his Marines.

And they did a good job.

This weekend was for the soul.

There’s plenty of time for

#beatingcowdens 

this week.

 

The Days are Long, but the Years are Short…

 

A wise person once told me this.  I think Meghan was young, and in that two-year span where most of her time was spent screaming.  I admit to wanting those days to end when I was in the middle of them.  And, while I miss some of the cuddling, truth be told, I’m not sorry I wished THOSE days away.

It’s the rest of them.

From the time she stopped screaming, she’s been pretty cool to be around.  And now I look at her eye to eye.  While she’ll always be my baby, the years seem to be flying by.

This week I had to explain to her middle school that she would NOT be taking 9th grade math in 8th grade.  For some people this makes a lot of sense.  For us, not so much.  I’m all about the foundation of math, and building without the 8th floor seems silly to me.  Plus, really, there is nothing wrong with taking 8th grade math in 8th grade.  What’s all the rush?

When Meghan was born she had seven great-grandparents.  Two of them she never met in Puerto Rico, but still seven great-grandparents.  Insane.

She also had 5 grandparents.  That’s a lot of love.

But, I also remember clearly a colleague at work commenting, “That’s a lot of loss she’ll have to endure.”

Three of the most important men in my life.
Three of the most important men in my life.

I was indignant.  Annoyed when she said it, because even though my conscious mind knew it to be true, I was not one to sit around and think about it.

We had Cowden’s Syndrome to digest.  We had major league health and emotional issues to manage, and I couldn’t allow fear to envelop us.

I surrounded her with the grandparents and great-grandparents as often as I could.  And every year that ticked by was a blessing, because she built her own memories and relationships with each one.

The fathers and grandfathers...
The fathers and grandfathers…

Then, in June 4 years ago, in 2012, we lost GGPa, Grandpa Al – Ken’s Dad.  He was so much a part of our lives and our family.  Ken embraced us as his own when he married Mom, and his family was no different.  And Meghan and GGPa… well, she was his “Sapphire,” and they could certainly light up each other’s eyes.

In the fall of 2013, Grandpa Tom got sick.  He was never ever sick.  But, this time it looked very wrong.  And it was.  In about 3 months time, he was gone.  Snatched away at 65.  He had made such an effort to be around Meghan.  He was so deliberately making up for lost time and I loved him for it. They had their own set of memories…

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A few months later, in October of 2014 Great Grandma Gen headed up to meet the angels she missed for so many years…

And then in March of this year our beloved “Pop” was gone.  Pop was larger than life.  And even at 96, seemed almost invincible.  Until he wasn’t.  The ache is deep, and raw.

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Five years ago I bought so many Father’s Day cards, people would laugh at me.  Five years ago I remember telling Meghan how thankful I was to need to buy that many cards.  Five years ago, I couldn’t have predicted…

So much has gone on in our lives on a medical front.  If I count loosely I would say it’s been about 10 surgeries between us since that Cowden’s diagnosis in 2011.  So often we feel like we are bouncing from one hospital or appointment to another.  So often we are scheduling appointments instead of relaxation, surgeries instead of vacations.

But, we make a point to stop.  To try.  To focus.  Yesterday was a tough day.  The pain was a bit overwhelming at times.  But, the gratitude runs deep, for the family we have.  For Felix, the best husband and father we could have ever asked for.

Felix took some of Pop's tools from his car, and brought them back to their glory.  Those two had their own special bond.
Felix took some of Pop’s tools from his car, and brought them back to their glory. Those two had their own special bond.

Tonight there was wonder in Meghan’s eyes.  She saw the first fireflies of summer after swim practice.  They went out to get a closer look.

And I peeked out onto the back deck to catch a glimpse of my 5’8″ daughter on her father’s shoulders – to get a better picture of the sunset.

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A better view on Daddy’s shoulders – no matter how tall! 🙂

I smiled, in spite of myself.  Tonight it’s not about the weeks ahead.  Tonight it’s not about the next surgeries and appointments.  Tonight, it’s about tonight.  It’s about going to bed a little later so as not to miss the little things.

Tonight is about making memories.  The little ones.  The ones that matter.  The ones you carry in your heart forever.

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The Days are Long, but the Years are Short…

And we remain forever

#beatingcowdens

N.O.S.E. an Acronym that Makes Sense!

So many things in life make no sense at all.  I don’t need to fill in those blanks for you.  No doubt you have a bunch of your own things in mind.

The illogical is part of our existence here.  What we do with it is what defines us.

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Meghan’s right foot stopped growing a few years ago.  I didn’t notice for a little while.  She was already wearing a size 9 in the 5th grade.

She had had 5 surgeries to embolize an AVM (arteriovenous malformation) in her right knee.  At some point they theorize that by slowing the blood flow to the AVM, the blood flow to her lower leg and foot also slowed, stunting its growth.

Now, on the surface that may not sound like a big deal, and I guess for a while it wasn’t.  Most people have feet that are slightly different sizes, many a half-size off.  Most people are still able to fit them into one pair of shoes.

But the left foot kept growing.  Right now it’s stalled at a 10.  We can’t be sure it it’s done.

The ramifications of this began to have far-reaching effects. The different foot size adjusted her entire stride.  The smaller foot is weaker, and naturally over pronates.  There began to be back and shoulder pain…

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There was one more knee surgery last May – to clean out some residual blood and quarterize a few spots in the knee-joint.  That proved to make the knee even a little weaker.

There came a point where each foot needed its own pair of shoes.

Keeping her in a pair too big would compromise the weaker AVM leg.  Putting her in a pair that was too small was just impractical.  So we began to buy shoes in a 9 AND a 10.

Now we consider ourselves fortunate to be able to buy two pairs of shoes at a clip.  We have only one child, and I find good shoes to be a wise financial investment.  Buying the two pairs is never what bothered me.

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My trouble came with what to do with the other shoe.

I threw some away, but that didn’t feel right.

People, not thinking it through, directed me to odd shoe websites.  But, the odds of me finding a perfect match were slim to none.  It didn’t make sense for us.

So, the shoes began to stack up in the basement.

Some internet searching brought me to National Odd Shoe Exchange (N.O.S.E,)  And a million bells and whistles went off.  Here was a real, 501c3 charity that accepts “in kind,” or actual SINGLE SHOE donations.  They pair them with actual people.  They work with amputees.  They work with real people, registered in their database, and they send them shoes!     History of NOSE

And, since they are a registered 501c3, our donation, as well as any postage, are fully tax- deductible.  An added, unexpected bonus.

So, today I mailed a box to Arizona.

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In it were three “pairs” of shoes.  10s for the right, 9s for the left, just the opposite of my girl.

And somebody, somewhere, or maybe even several “somebodies” will benefit from Meghan’s adversity.

It seems almost ironic that as I write tonight we are nursing a left shoulder that “froze” today,  more than likely the result of the
“off sides” stride.

It locked up in the pool.  During the last practice before the big meet this weekend.  She has trained so hard.  She fights every obstacle head on.

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Feisty.  Tenacious.  And in pain.

Tomorrow there will be more ice.  More stretching.  More anti- inflammatories.

There is no pause for this young lady.  Life keeps careening from one obstacle to another.  Yet, she walks straight and tall and with her head high through it all.  Counting her blessings.  Growing up too fast.

So many things make no sense at all.

But for us, tonight, the knowledge that in a few days time 3 “pairs” of brand new shoes will be available to someone…

Well for us, that is a bittersweet way to find some sense in this big mess.

#BEATINGCOWDENS

#ONESTEPATATIME

 

In a Dark Room…

daughter

I’m thankful that some nights she still invites me to chat with her in her dark room

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

Like yesterday when I told her that I am luckier because I have her to keep me going

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

Pain, surgery, worry, wonder, loneliness, anticipation, anxiety, and sometimes terror

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

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Aunt Em, Arista, Albany, and (Almost) an Ambulance

THAT would be the alliteration to sum up the week that was, Thursday May 5th – Thursday May 12th.

Sometimes I get annoyed at myself that this blog gets neglected.  Then I realize it’s because sometimes I have to LIVE the life, before I can write about it.

It was a rocky month leading into the much anticipated school play.  Her health was questionable.  She spent most of Spring Break recovering from some random illness.  Attendance at swim has been spotty, a true sign she’s not herself, but after attending the Swim Team’s annual banquet the night before, she was ready for “The Wizard of Oz Jr.”

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Meghan with the drama teacher that helped her find a piece of herself.
Meghan knew she liked the stage.  She didn’t know  until she met her drama teacher in 6th Grade, that she also enjoyed acting, and singing.  Her father and I were stunned when we heard her for the first time.  Thank goodness for teachers… she may never have found this outlet.  And it has been such a wonderful thing.  She has met some really great kids, and has had fun along the way.

She was so excited to play Aunt Em in this year’s play, and even more excited because “Dorothy” was being played by a trusted ally, a rare commodity on Meghan’s life.  It made the role easier to get into, and to play with her whole self.

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Meghan and her friend “Dorothy”

Four shows in two days tired them out, but the standing ovation to almost a packed house at the Intermediate School Friday night showed all their efforts to be worth it.

Meg slept almost all day Saturday. This is how it works.  We play trade.  For those of you familiar with the “Spoon Theory,”  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)  we often borrow off the weekend “Spoons.”  We don’t get out much, but it keeps things working.  She woke some time around 2:30 PM Saturday when I roused her.

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Sunday was Mother’s Day.  We visited some special mothers, caught up on some homework, and finished a project.  Monday was school as usual, followed by her second year induction into the National Honor Society, (Arista) followed by preparing for Tuesday’s trip to Albany.

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Mother’s Day 2016

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Arista 2016
Some time over the spring break I was contacted by the office of Senator Andrew Lanza.  Apparently, every year, every Senator gets to select a “Woman of Distinction” to be honored at a special ceremony in the Capitol in Albany.  We were amazed, and humbled that he had chosen Meghan.  The youngest to ever receive the honor, he was attracted to her spunk, her determination, and her “can do” attitude.  He liked that she didn’t wait to grow up to start doing something.  He liked that she was 12 and making a difference now.

So on Tuesday morning, Felix, and Meghan and I set out on the 2.5 hour journey to Albany.  The trip was smooth, until we got a tiny bit lost in Albany, but we were easily saved and set right by the Senator’s staff.  Nancy had us in the right direction in no time.

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Every “Woman” had a bio on the wall. We also got a beautiful book with all the bios inside!
We got to the Senator’s Office and enjoyed a wonderful lunch.  We got to sit on the Senate floor, and watch some of the Senate in session.  We walked around the building, and enjoyed the afternoon.

The ceremony began at 5:30 and probably my only regret was that I couldn’t record every moment to replay in my brain forever.  It was one of our proudest hours as parents.

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https://www.nysenate.gov/initiatives/women-distinction

(If you click the blue link above, Meghan is on Page 44.)


The reception that followed allowed for some conversation with Senator Lanza.  An incredibly intelligent, down-to-earth, “regular,” guy kept Meghan chatting for well over an hour.  We took pictures, laughed, and she even secured an internship for the summer after her freshman year in High School.

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Meghan and Senator Andrew Lanza
The drive home got us in the door around 11.  We were asleep by 12 and ready for school and work the next morning.  Tired, but determined, she even made swim practice.

Thursday I dropped her at school regular time.

By 8:20 my phone was ringing with the school nurse’s number.  She was not well, and they were frightened.  They wanted to call an ambulance.  Knowing where that would lead I begged her to wait.  I went into automatic, and with an incredibly understanding group of colleagues and administrators, I was at her school in under 10 minutes.

When I arrived the color had begun to return to her face.  She was weak, but able to focus on me.  I told them I could take care of it, and I signed her out while they wheeled her to my car.  Once in the house I waited a good 3 hours.  No sign of a problem.

Rice noodles and flat ginger ale did her in inside of 20 minutes.  I can honestly say in her 12 years I’ve never ever seen her that sick.  She was in so much pain, periods of time were missing from her memory.  I was terrified.  But, foolishly or not, I held out.  She was hydrated.  I wasn’t taking her to the hospital here.  Not again.  And I knew we were meeting a new GI in the city Friday.  If she could just hold on…

And she did.  Because for almost 24 hours I just didn’t feed her.  She slept most of it anyway.  But, I’ve decided hydration wins, and food can wait.  It worked.  By Friday night she was almost back to herself.

Yesterday she swam in a CYO meet.

My head spins.  And the tales I tell here are simply HER end of the week.  Add in the routine, and the mundane, and…  it’s been a long week.

I have work to do.  Lots of it.  It’s in a big pile right here next to me.  There were plenty of things that “should” have been done that weren’t.  And you know what?  We’re OK.  The house is in one piece.  The Board of Health isn’t coming to inspect my extra dog hairs on the floor.  The laundry isn’t folded.  But it will get done.

Tonight I put me first for an hour, and putting me first is getting the week out of my system right here.  Just me, my thoughts, and a glass of wine.

Cowden’s Syndrome – you’ve got some good fight in you, but we are stronger.  We will take you every time.

We are #BEATINGCOWDENS!

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