On Your 13th Birthday…

 

scan0003August 9, 2016

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.

lori & meg

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.

“There’s a bit of magic in everything, and then some loss to even things out…”

As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with frightening accuracy inside my head.  I have thought of the song from time to time over the last 20 or so years.  The album was first introduced to me by a dear friend soon after the passing of my beloved cousin “Angel Meghan” at the age of 6 in 1991.  As an elementary school teacher I have been known to “think” in books, but its more unusual for me to “think” in song.  It isn’t too often that a song “speaks” to me…

When you pass through the fire, you pass through humble
You pass through a maze of self doubt
When you pass through humble, the lights can blind you
Some people never figure that out

You pass through arrogance, you pass through hurt
You pass through an ever present past
And it’s best not to wait for luck to save you
Pass through the fire to the light

Pass through the fire to the light
Pass through the fire to the light
It’s best not to wait for luck to save you
Pass through the fire to the light

I have a brother.

Birth congratulations to my Dad and my brother’s Mom, Kelly would be overdue by about 24.5 years.  But I have a brother.  And I am damned glad I do.

I have always loved him.  Always known he was there.  Always followed the tales of his life from afar.  Always sent a card.  But, never really got to spend any quality time with him.  Knew he was well loved.  Knew he was tons of fun.  But never really got to KNOW him.  Not by anyone’s fault.  Life and circumstances have a way of getting in the way.

And then some time in November I had to make a phone call.  I had to call him in the middle of the life he established Texas, and tell him Dad was sick.  Quite sick.

I had known for a few weeks.  I had seen him in the ICU.  I knew about the jaundice.  I knew in my gut things were not good.  But it took weeks to get Dad to let me tell my sister the full extent of the problems looming.  Then finally he let me call my brother.

And while the weight of the guilt of carrying that secret was coming off of my shoulders, I knew it was delivering a crushing blow miles and miles away.

A few days to digest, and then another call.  “I think you need to come.”

And that was all I needed to say.

He stepped off the plane a few days later at exactly the most perfect time.  He parked himself right in Dad’s apartment and stayed.  He was there for those overnights that were getting a bit tricky – to say the least.

As you pass through the fire, your right hand waving
There are things you have to throw out
That caustic dread inside your head
Will never help you out

You have to be very strong, ’cause you’ll start from zero
Over and over again
And as the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Lyin’ straight ahead
Lyin’ straight ahead
As the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Dad was getting sicker.  Quickly.  And despite our initial desires to deny the reality, we knew that we were walking uncharted territory.

I grew up with two sisters -one older, and one younger.  We grew up understanding each other’s strengths and weaknesses, and working on love throughout.  Now I was in a different trio.  A different dynamic.  For a different purpose.  One none of us wanted to face – but we were there.  And the “All consuming fire” was “lyin’ straight ahead.”

We formed Dad’s “Team,” his three children, with whom he developed three distinctly different relationships through the years.  We took the best of what each of us had to offer.  We laughed at old stories.  We cried out of sadness and frustration, and anger and disappointment.  We held each other with gratitude for the man whose common link between us all had done wonders to bring us together.

Waiting for Dad’s procedure at Columbia Presbyterian – the one that was supposed to be 45 minutes, and was unsuccessful at 3 hours- we were all in quite a state.  My brother, aware of Meghan’s countless procedures at one point looked at me awestruck. “You do THIS all the time?”

Well – not quite THAT… but to some extent yes.

And there were times that we sat, each on our own personal hell.  Wondering, worrying, agonizing, reflecting, and above all desperately wanting to make it better.  We sought the magic wand… and realized it was already in place.

They say no one person can do it all
But you want to in your head
But you can’t be Shakespeare and you can’t be Joyce
So what is left instead

You’re stuck with yourself and a rage that can hurt you
You have to start at the beginning again
And just this moment this wonderful fire
Started up again

When you pass through humble, when you pass through sickly
When you pass through I’m better than you all
When you pass through anger and self deprecation
And have the strength to acknowledge it all

When the past makes you laugh and you can savor the magic
That let you survive your own war
You find that that fire is passion
And there’s a door up ahead not a wall

Dad’s struggles.  Dad’s worries.  Dad’s heartache.  His pain.  They were about to end.  He was going to be free from his broken body.  He was going to be free of his suffering and his pain.

But what about us?

I know all about the truth, and I believe deeply in Heaven.  But I am selfish.  I miss him.  I miss my sounding board.  My ally in all endeavors.  My confidant for the “blow by blow” struggles that were too tough for others to hear.

“There’s a door up ahead not a wall…”

We met at the cemetery today.  We stood for a while.  We cried a little.  We prayed a little.  We held each other a lot.  We know he’s not there.  He is in the crystal blue sky and the winds that blow, and in the hearts of all who love him.  But I admit to not shaking the selfishness.

We ate pizza as a family.  The conversation was easy and light.  Except when Meghan butted up real close to her uncle to talk about her biopsy Tuesday morning. Darned Cowden’s syndrome won’t cut her a rest.   She told him all about the arrival time, and the procedure.  She spoke like a pro – someone easily twice her age.

So much uncertainty.  So much loss.  So much worry.  So much… so soon.

She has taken an extra love to her Uncle Shane these last few weeks.  This whirlwind that took her Grandpa from her just as their relationship was budding, seems to have left her a pretty cool uncle to share some love with.

As you pass through fire as you pass through fire
Tryin’ to remember it’s name
When you pass through fire lickin’ at your lips
You cannot remain the same

And if the building’s burning move towards that door
But don’t put the flames out
There’s a bit of magic in everything
And then some loss to even things out

Some loss to even things out
Some loss to even things out
There’s a bit of magic in everything
And then some loss to even things out – Lou Reed

I have a brother.  And now I have to let him go.  But not far.  And certainly not forever.  For no one can live through what we lived through these last few weeks and remain the same.  There are experiences once shared that can not be forgotten.  There is respect earned that can never be lost.  The lesson, the reminder that life is fragile and fleeting remains forever.  I always had 2 sisters.  And I always loved them so.

But now, with an ache in my heart, and tears on my face, I have a brother too.

“There’s a bit of magic in everything, and then some loss to even things out…”

Photo credit -Meghan 12/28/13
With a “Smile” from Grandpa Tom

Believe in the Magic

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This has been quite a year, for our whole family- but if I am honest, especially Meghan.

This year in January we had the “Santa Claus” chat. And, as careful as I was – I was devastated when some of the magic left her that day.

During this last year, she lost my grandfather, her GGPa. and had her first close encounter with deep loss.  Last October when GiGi fell she saw a fragile side of two of the strongest people in her life. She has watched Grandma- my Mom – look after HER Mom, and she thinks- and she worries. Then just a few short weeks ago GGMa had heart surgery. And we have had so many discussions about life these weeks, your head would spin, and your ears might bleed.

That doesn’t even bring into question her own medical issues. This child spent just about every single day- from the day school let out- at a medical appointment. Many if them were routine follow ups. Many others addressed new problems and concerns and left us with more unanswered questions. And all of this – that began literally the day after school ended, will culminate August 20th with hand surgery. This has been the summer..  Well…

So she has been preparing her answers when people ask her how her summer was. Before we even left for Disney she had decided she would tell them; “I love my new swim team, and Disney was great!”

She is smart enough to know most people will not REALLY want to hear what e transpired this summer, and she hates to lie- so we found a happy medium!

That’s because Disney always has been great. But the first few days this year were a little rough. She was struggling, and when we finally got her to talk she explained that she hoped the trip would erase a horrendous July. It didn’t. She was literally expecting the “Magic” to whisk it away.

Then  there was that problem with the “magic.”

See for the first time – with the realization that Santa wasn’t who she expected- came the realization that, well, Mickey, and Goofy, and Donald- well you get the idea.

Maybe its fortunate she was too exhausted too much during this trip, so we had lots of time to talk. And, somewhere around the third day she caught on.

That MAGIC- it’s yours. Inside. No one can take it. Sickness, sadness, illness, doctors, surgeries, Cowdens syndrome- nothing!

The magic is there for you if only you believe. THAT is the wonder of Disney. THAT is what keeps us coming back.

The 2013 theme is “Believe in the Magic.”

She gets it. We all do. You have to believe…

Much more about this trip when I am back on my real computer!

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May All of this Princess’s Wishes Come True

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As I rest my head tonight I hear the slow restful breathing of my husband and my beautiful 10 year old.  Today we swam. Today we had her hair done at the boutique. Today we wore fancy dresses. Today we laughed and hugged and lived. Today was not about challenges that lie imminent. Today was about laughing. Today was about magic. Today was about Meghan. So when the woman waved her “pixie dust” I will confess to fighting back tears. “Bippidi Boppidi Boo! May all of this princess’s wishes come true!”  Something so silly – yet with ridiculous deep meaning to us. Love my princess!

“What are you celebrating?”

I am awake earlier than the rest of my family.  My big dog took a container of Meghan’s gluten, dairy, soy free chocolate chip cookies off the counter last night while we were out.  I think she will be fine.  She just had her second dose of activated charcoal, and she seems to be resting comfortably.  But. EVERYONE knows who the Mom is when they are sick – so she and I BOTH had a long night. (and I am sending her Daddy out to clean the yard! :-))

Allie - The Cookie Monster
Allie – The Cookie Monster

Last night we headed to Manhattan where we celebrated Felix’s sister’s 50th birthday.  It was a crowded room, and although the food was quite good, I had a tough time being so cramped in.  My little girl, as usual amazed me with her calm, patience, and poise.  I asked her before we left of she wanted me to ask the restaurant to cook for her.  She said she wanted me to pack her dinner.  She doesn’t trust very many places to “get it right,” and she did not want a belly ache.

So.  she put on her fancy dress.  The one she is so EXCITED to wear to the Father/Daughter dance hosted by her school Monday night.  I put her hair up and stepped back. This child has always been mature beyond her years, but when did her body start to catch up?

My little girl?
My little girl?

We sat, for a few hours.  There was minimal time to walk around, but when she did get to talk she vibrantly retold the story of how she lost her last baby tooth, and the Tooth Fairy left her $20 and a Tigger pin!  Way to clean up on the last tooth,  None of the others were worth that much!

tigger

Magic.  She brings it back into our lives.  She rounds out her father and I.  She is a princess.  Yes, she has just about everything she has ever asked us for, but she has a whole lot more.  She has compassion, patience, maturity, and wisdom.  She has kindness and generosity.  She takes pleasure out of making people happy.

My mother always said, “Children should be spoiled, just not spoiled rotten.”  Doing our best Mom.  It seems to be working out ok.

Before I started writing this, I was searching the Disney website.  I was playing around with prices for a summer trip.  We have taken Meghan to Disney in August (usually for her birthday) every year since she turned 5.  My house has photos in every room that remind us of our adventures.  We have had the happiest of times at Disney.  We enjoy each other.  And, I have to say, the year my parents joined us, was one of the best vacations.

Family fun
Family fun

We started going to Disney because of their accommodations for allergies.  It  is almost impossible to maintain a gluten, dairy, and soy free diet for a week without staff trained to take every allergy very seriously.  And while we struggled a bit last year to find “quick service” food for her, on the whole we have had only positive things to say about our Disney dining experiences.  When you have a child with allergies, you plan your trips a little differently.  Everything else falls into place, AFTER you know they will be well fed.

Disney also accommodates her chronic joint pain.  Even with the Celebrex she could not endure the miles of walking we do each day.  She travels Disney – walking some, but spending the majority of her day in a portable wheelchair.  We always get a room on the first floor to avoid extra steps, and in the event those knees give out, every park has everything from Advil to heating pads to help with the pain.

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Not to mention the Magic.  I believe in the wonders of Disney.  I believe in the smiles of hugging Chip and Dale, and Mickey and Minnie, and all their friends.  I believe in the smiles on my girl’s face.  I believe in the memories we are making – that no one can ever take from us.

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So, this morning when I ran the prices of the trip through the computer I choked a little.  It, like everything else, has gone up a good deal since last year.  And, for a brief second the thought of not going crossed my mind.

I mean, the deck needs major work, we still haven’t finished the upstairs.  There are plans for the basement to be redone, and the backyard needs help.  What about that awning for the blistering sun in our back yard.  Plus, this year forced us into a new car, braces….

Then I saw the question in the corner of their website.  It said, quite simply, “What are you celebrating?”

Well, that did it.  We are celebrating all right.  We are celebrating Meghan’s negative biopsy.  We are celebrating the knowledge we have gained from our Cowden’s Syndrome diagnoses, and the ability to “strike first.”  We are celebrating that after a long stretch of studying, they offered the Electrical licensing Exam, and Felix passed part one on his first try.  We are celebrating the love of friends, the kindness of stangers, and the compassionate heart of my little girl.  We are celebrating the power of God and the Holy Spirit to lead us to a place we worship together as a family each Sunday. We are celebrating “more birthdays” as Meghan will turn 10 and Felix 40 during that hot August vacation.  And I could go on and on with the thoughts that flooded my head in reply to that simple question.

Disney 2012
Disney 2012

So today I will finalize our trip.  I will be sure to get “trip insurance” in case life tosses us any more curve balls between now and then.  We may not finish all the projects around the house this year either.  But we have lived here for 12 years now, and its a pretty nice place to be.  The projects, the bills – they will get paid for and finished.

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The magic may not last forever.  We have learned as a family to stop and enjoy the ride.  We are celebrating our countless blessings.  God is good.  Life is good.  Family vacations are worth celebrating.

celebrate