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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The Patient or The Person?

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I am sure I am not the only one, especially the only parent, who struggles daily with wondering if I have made the best choices for my daughter.

Sometimes we argue, and bicker, and I find myself wondering if I am reaching her.  Other times I look at all her activities and wonder if she is too busy.  Still other times, I look at her and I see those tired eyes, and I wonder what I can do to make things better.

Choices.  Life is about choices.  And around 12 years old is that transitional time where more and more of the choices become hers, not mine.  I can guide, and support, but she is beginning to make more of her own choices, and handle their consequences, be they positive, or not.

She is doing a great job,  and truly despite a few hiccups, I could not be more proud.  But I will always worry.

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The one area though, where the decisions are mine and her father’s to make, are the complex medical decisions.  And with Meghan there are many.  I have to wrestle with my roles, advocating for her best interests physically, mentally, and emotionally.

This has been a growing process for me, and there has been such a learning curve.  With Meghan there is always a medical decision, always a worry, always something that has to be checked out and looked at.  Many of these things have potentially serious consequences.  But, she is not a medical specimen, with a fascinating genetic disorder.  She is a child, a young lady, with hopes, dreams, goals, and emotions.  Finding the balance between who she is and what she needs is tenuous.

Sometimes I get it wrong.

This time, I got it right.

The doctors are worried.  She needs a biopsy.  But, it’s not her first biopsy, and it won’t be her last.  There is reason for concern, and we take that concern very seriously.  The biopsy was to take place on the 9th of December, the first available.  It would keep her from swimming for about 10 days.

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She looked at me.  I knew in my gut what to do.

No, you’ll have to book her for the 16th.  (Even knowing the extra week of waiting would be agonizing for me.)

The doctor looked puzzled.  But…

Listen, she has her drama concert on the 10th, and her swim meet on the 12th and 13th.  She’s primed and ready to qualify for a championship meet.  One week is not going to change that biopsy.  You and I both know, it is already whatever it is.

She looked at me.  She looked at Meghan.

My eyes locked with my girl.  In those eyes she thanked me for putting her the person, before her the patient.

Thursday there was this…

Saturday, there was this…

And before the meet was over she had personal best times in 4 out of 5 events, and 2 qualifying times for Silver Championships.

We have no idea what Wednesday and the ensuing week waiting for pathology will bring.

But, there is a peace in knowing the person is always more important than the patient.

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And then THIS happened…

And in the middle of the summer that wasn’t, Meghan’s drama teacher was out doing her thing, inspiring my daughter to step out of her comfort zone and reach new heights.  I LOVE the drama teacher.  And I LOVE that my girl has no fear.

Summer play.  Broadway scenes.

She is SO NOT defined by Cowden’s Syndrome… Not today, not ever.

Kudos to my Mary Poppins, and the whole cast.  (Even on their crackly public school microphones!)

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I LOVE that she has an outlet that she enjoys so much.  I LOVE that she smiles on the stage.  I really LOVE everything about the peace it brings to her.

This passion, this will help her as she works at BEATINGCOWDENS!

She didn’t get THAT from me!

And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again.

I am just along for the ride.

She looks like me.  She and I share a broken PTEN gene, and all the ramifications.  She inherited my tendency to grow things, and perhaps her body is even playing harder with her.

We are roughly the same size.  We have curly hair.  We share some clothes.  She and I are both stubborn, sometimes to our benefit and sometimes to our detriment.  We are strong-minded and strong-willed.

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And that is probably where the comparisons stop.

Yesterday after a full day of school, she fit in a PT session, 2 hours at after school drama, a good run at her abbreviated swim practice schedule (for the second day in a row,) and came home to complete some lingering homework.

Tonight, her father and I took her to the school’s chorus/drama performance.  It was hot.  It was long.  It was so worth it.

The kids have amazing talent.  I guess what I didn’t really get until tonight is that mine fits right in.

After a skit on Helen Keller, where she played Annie Sullivan, she stood with several 6th-8th graders and they each sang acapella,  an excerpt from a Broadway show tune.

Meghan had never heard of “Fiddler on the Roof.”  She downloaded the song she was told to learn.  She practiced.  I fought back tears of pride and joy.

I told her drama teacher I had no idea she had that in her.  The teacher told me to “wait and see what we bring out of her in the next 2 years.”

What a gift.  Two happy places.  The stage AND the pool.  BAM!

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Take that Cowden’s!  This kid’s got things to do…

Winning

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Winning.  It feels good.  And it’s not about being first.  And it’s not always about being “the best.”  Sometimes winning can be as simple as not losing!

Every day we wake up and prepare for battle.  The “sword” is sharpened before we get out of bed.  We can not take a step unprotected, or unguarded.  And, even being on guard against Cowden’s Syndrome all the time is often not enough.  So often things just happen…

Sometimes we get a little  A LOT frustrated.  Often we feel beat up by this beast that we battle.  “It” gets quite a few swipes in.  But, we have, and we WILL always remain on top.  That’s why we are BEATINGCOWDENS.

So tonight, as we drove home from a swim meet in the Bronx, we chatted –  my girl and I.

And it was pleasant, easy conversation.

So often as the weekend comes I reflect on the week that was in awe that THAT much “stuff” fit into the week.

This was no exception.

Last month she was sidelined from the swim meet.  Recovering from knee surgery just three weeks prior, she was in no condition to compete.

This month she was all in, and we both loved it.  It is such a treat to watch her when she gives it everything she’s got.  It’s an even bigger treat when she takes 4 seconds off the 100 free and 1.5 seconds off the 50 fly.

Winning.

The conversation on my end for the long afternoon of waiting was pleasant and easy.  A bunch of overheated parents held captive together, all sharing a common hope that their children swim their best.  Meghan talked comfortably with her peers, easily passing the time between events.

There are goals, qualifying times in her brain, but today she was pleased by her success and so was I.  She may reach these times this season.  She may reach them next season.  But, we agreed that it doesn’t matter as much as her continued progress.  And I was able to tell her how proud I am that she persists.  Through 5 knee surgeries, through thyroid numbers that would level the strongest among us, through chronic pain – quitting is not in her vocabulary.  This is the focus she will take with her for the rest of her days.  This is the attitude, this “I CAN do it,” is what I pray will follow her all of her days, through all aspects of her life.

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Winning.

This week she got a part she wanted in the play she’s been working on in after school drama.  She was patient.  Persistent.  She calls drama “fun,” and the students, “funny.”  She never acted before.  Except for every day when she “acts” like a pain-free “regular” 11-year-old.  She’s thrilled.

Winning.

The marking period ends this week I think.  Her averages on the “Pupil Path” app impress me.  And I was a pretty good student.  I don’t check her homework, or really bother her about anything.  “I’ve got it, Mom.”  And the numbers tell the same story.  All those years of working together on good study habits paid off.

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Winning.

The fund-raiser, “Jeans for Rare Genes,” is taking off.  And we haven’t seen anything yet.  People are reaching out.  They are coming to the event, donating raffle baskets, making monetary donations, and offering their time and energy.  Local businesses have been extraordinarily supportive.  Meghan had seen the best in so many people.  She knows her life matters.  Her story matters.  Her drive is being rewarded.  Her big heart is teaching her to dream bigger, and help more people.

Rare Disease Day Fundraiser

Winning.

We lost our Allie Girl, our 11-year-old rescue in December.  She was with us 7 and a half great years.  We miss her.  All of us, especially her Dad and her “furry” sister Lucky.  Felix approached me about rescuing another dog.  I thought it might be too soon.  He reminded me that Allie had a good life because we rescued her.  He felt strongly we could be that same kind of help to another dog, and by doing so we would honor Allie, and help Lucky’s loneliness.  I told him I was open – but no puppies.  I wanted to know we were saving a dog.  I wanted a dog no one else wanted.  That made sense to me.

Sweet April showed up on a web site Felix was following.  A three-year-old lab mix with an uncertain history, rescued from a high kill shelter in Florida.  She was being fostered in Pennsylvania.  “It’s all in the eyes,” Felix said.

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We put in an inquiry, and left an application with references.

The Email said she was going to be in Brooklyn Tuesday night.  Could we come and see her?  And if everything went well and she and Lucky got along, would we consider taking her?

TUESDAY?  Who takes a new dog on a Tuesday?

Sound asleep in the car Tuesday night.
Sound asleep in the car Tuesday night.

Apparently we do.

April arrived at our home around 7:30 PM Tuesday, after a brief visit to Petsmart for a new collar, and to meet GiGi and Pop!

We had to get her in, fed, settled and all of us off to bed within a few brief hours.

She found her spot.  And Meghan has slept better this week than she has in years.

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WINNING!

Lucky has developed arthritis in her knee, and a visit to the vet Weds. with both dogs in tow was very emotional for me.  April checked out as healthy and strong.  And my Lucky had her very first blood test.  I am happy to report she is healthy as can be.  I left with a script for anti-inflammatory medicine for her.  She’s going to need it to keep up with her little sister.

And somewhere I can imagine Allie smiling in Heaven, as Lucky is the recipient of the playful nips she used to give so frequently.

Allie always watched over her human sister.
Allie always watched over her human sister.

 

The sight of two tails wagging again was good for us all.

WINNING!