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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Portrait of Courage

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We have a short window of time from the point we meet someone to make an impression on them.

Think about it.  It happens all the time.  You pass by countless people, on line, in the grocery store, the receptionist at the doctor’s office…  And often, within moments you either remember a rude interaction, or you forget that they even existed.  The brain has to protect itself to some extent.  We can’t remember everyone.

But then there are some people you can’t forget.

I met her in the jewelry store a few months back.  I was buying a bracelet for my girl on a particularly tough day.  We struck up an easy conversation.  She was young, bright, and articulate.  She was friendly. She asked about my daughter and I shared.  I explained Cowden’s Syndrome and some of our most recent endeavors.  Then she nonchalantly told me she was a cancer survivor.  Melanoma she told me.  She was 22.  She told me she planned to be a teacher.  I imagine she will be a great one when it’s time.  At some point I brought up our trip to Disney, and how it might be time to take a break, and save some money.  She told me – wise beyond her years – that the bills will always be there.  Go.  Enjoy.

hope and spoon

Wednesday night I went into the jewelry store again.  I struck up an easy conversation with another employee.  I wanted to get a necklace repaired for Meghan.  It had a “hope” ribbon and a spoon.  She asked about it and I explained again about Cowden’s Syndrome, and the Spoon Theory.  When she brought me the necklace she wouldn’t take any money.  Instead, she offered me a “pay it forward” opportunity.  She showed me a “gofundme” page on her iphone.  She explained that this young girl, now 24, was battling stage 4 malignant melanoma, and if I felt so inclined, I could contribute there.

My heart began to race.  I recognized this girl.  She was the one, the cancer survivor who had helped me months prior.  I asked a million questions, rapid fire.  The kind woman answered them.  I was stunned.  A melanoma survivor, she found a lump a few months ago, which led to a CT and PET scan, and the determination that the melanoma had spread.  There will be treatment.  She is tough.  She will fight.

24 years old.

My sister is 25.  My brother is 25.  My cousins are right about that age.  They are all at various points of setting up their lives, not fighting for them.

She could have been anyone.  This girl in the jewelry store.  But she was dynamic.  Because apparently that is who she is.  She is the person that sticks with you.

Read her story here. http://www.silive.com/sports/index.ssf/2014/06/college_of_staten_island_to_ho.html#incart_river

And if you are so inclined, do what you can to help.

be the change

That is a conversation Meghan and I have all the time.

Life is not easy.  It is often unfair.  Frequently she feels like crap, and always she seems to hurt.

Yet, I tell her all the time, you have a short window where people will make a judgement about you.  It’s not fair either, but it’s true.

And when you live your life chronically ill and/or in pain, you may sometimes feel like you have to lie.

But I am helping her find the balance.  Ways that she can still be honest about what she’s going through, and say what she means, with an upbeat delivery.

i am one

Meghan has been blessed with a beautiful elementary school experience that spanned  6 years and 2 schools.  And although we elected to change schools at the very end of fourth grade, she can reflect and see the positive experiences gained in both places.  It seems everything happened as it should.

And in third grade, one of the roughest years of her life, she was met with one of the most compassionate women I will ever know.  A gifted teacher who cared so much more about the child than the curriculum.  And this year, when there was loss, deep loss, and surgery, and more major struggles there were several excellent women in her path as educators, and sources of strength.  And again, there was one with a sick child of her own, who just “got it” from the beginning.  My gratitude knows no limits.

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Today we sat for a beautiful moving up ceremony.  Everything was perfect.  The length and content of the ceremony carried out through the careful precision of true professionals.  The children were calm and well-behaved.  Everything was smooth.  They all made it look easy, but I know all too well that its not.

Thirty years ago I walked across that same stage.  Today a lot of things came full circle, and after 17 plus years of teaching in my school, I sat in the seat of a parent, and I could not have been more proud.

She received two medals for school service, and she was beaming.  Then they called her name for the “Portrait in Courage” Award.  And the tears flowed.  Mine – not hers.  So touched by the time it took to match my child with an award that was a perfect fit.

See I always knew she had courage.  And I think most people who meet her would never deny it.  But lately, struggling with the pain, there have been some dark days.

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So we talk alot.  And I hope and pray that my words get through.

I tell her what a gift she has, that people view her has positive, and courageous.  I tell her that just because I happened to agree doesn’t mean the responsibility ends there.  When people view you this way, they look to you.  They feed off of your energy.  You inspire them to be better people.

It doesn’t mean you have to be positive all the time, because we all have our days – but it means most of your work has to be upbeat.

Today she hurt.  As she always does.  And I could see it.  But she never said it.  Tonight I felt her knee, and that all too familiar pulsing seems to be finding its way back.  She asks me not to hug her.  Especially in the morning – because my touch hurts.  There are dark circles under her eyes.  But we went out all day today, as a family.  And she was amazing.

She held that plaque in her purse.  She wore her medals.  She smiled.  She looked people in the eye.  She spoke.  She lit up rooms.

Danielle, from the beginning of my story, has never met Meghan.  Yet to me there are so many similarities.  I told Meghan all about her.  She gets it.  She gets a lot of things.  And as I struggle to help her find the gentle balance at 10 years old, of being positive and honest – I see role models for her in our small community.

“Portrait of Courage” indeed.  As her teacher said, she has endured more in her first decade of life than most, and is a force to be reckoned with.

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For Meghan, for Danielle, and for the others who we cross paths with every day – you inspire.  You lead by example.  You ARE changing the world.

Thank you.

Live Deliberately

Live deliberately.

From time to time, as I am working hard to get out of my own way, the words of Henry David Thoreau creep into my subconscious.

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Live deliberately.  On purpose.  With a purpose.  With goals.  With faith.  With belief that it all matters.  Not just in this world, but in eternity.

There are countless things in this life that are running out of control.

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Last week in church, I held the hand of a woman who is trying to establish her life here in the United States while her family originates half a world away.  I know very little about her, but I cried with her as she was enduring the loss of 6 family members who had all died in a car accident.  Out of her control.  Immeasurable pain.  No words.  Just prayer that she arrive safely to be with her remaining family.

Then there is my internet friend in Australia, whose daughter has endured more brain surgeries than I can count.  This week things went badly.  The surgery was aborted.  They had to make a new plan.  Her daughter- beautiful, 20ish, and full of life.

And another story I follow closely, of an acquaintance whose mom became septic in December after routine surgery.  The trials cause my heart to ache.

We could all list stories here.  Heck, I could go on for pages, the old friend whose brother is battling cancer… and so on.

I could fill this page with the struggles of my daughter this week.  Battling the demon that is Cowden’s Syndrome – and whatever else has crept into her body to accompany it.  I could write about the nights spent holding, and wishing, and praying that the pain be gone, or that God help us make some sense of her agony.  I could continue in frustration about the thyroid hormones all askew.  And the general lack of knowledge that greets us at most facilities.  But I won’t.  At least not today.

Today I am reflective about Thoreau’s words.  Today I am thinking about what it means to live deliberately.

I can not control tragedy.

I can not control pain.

I can not control sickness.

I can not control sadness.

I can not control life’s twists and turns.

I can not control the course of Cowden’s Syndrome or any other aspect of our lives.

No matter how badly I want to.  I can’t.

And, I also can’t make sense of most of it.

So, I have a choice.

I can sit here and mull it over.  I can feel everyone’s hurt and pain.  I can reflect on the unfairness of it all – or I can live deliberately.

I choose to hug my husband.  Because I don’t do that enough.

I choose to rub a dog’s belly.  Because it’s good for both of us.

I choose to eat well, and get and stay as healthy as I can.

I choose to be involved in passionately sharing my love for good nutrition and the products helping me find it.

I choose to take a deep breath when I am stuck in traffic.

I choose to deliberately try and turn lemons into lemonade.

I choose to use my grief over the loss of my loved ones, and channel my energy into the most positive outlets I can find.

I choose to get involved in raising awareness – of Cowden’s Syndrome and other RARE diseases.

I choose to get involved in things I feel passionate about, and not in things that bring me down.

I choose to advocate tirelessly for my daughter, and any other that I can help along the way.

I choose to always make sure I have an extra spoon for my daughter – or a friend in need.

I choose to laugh – at myself as needed!

I choose to pray.

I choose to be a friend.

Because to live deliberately doesn’t mean life will be easy.  It doesn’t mean life will go well, or the way we want it to.  It means making a choice to find what you can, dig deeply for the beauty that is abundant in the joys, but also hiding in the sorrows.

To live deliberately doesn’t mean I won’t be sad, or mad.  It means I will have ALL the feelings – on purpose.  Because to truly appreciate life I must experience all things.

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I choose to do one thing I enjoy every single day.

And today I choose to take a walk.

How will you live deliberately today?

 

The Spoon Theory

While we were in the hospital last week, a good friend, who is chronically ill herself, sent Meghan a very interesting article.

It was about “The Spoon Theory,” and explained chronic illness from the perspective of one who lives it every day.

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Meghan being incredibly literate, and a master at figurative language, picked up the analogies quite quickly, and while the author wrote about lupus, a disorder Meghan does NOT have, she found the text and related analogies very meaningful.

Our dialogue this week has already begun to include questions about how many “spoons” she has today.  As someone who lives with my own share of issues, but none as severe as my daughter, this has opened up communication in a fantastic way.

The author has copyrighted the story, so I have permission only to link you to it, but I encourage you to give it a read.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

And thank you my dear friend for sharing.  Thank you.