Default to Kindness

spirit-swim

Meghan loves to swim.  I mean, athletically it wasn’t where she started, but the knees.  Six surgeries on the right knee, and there was to be no more soccer, and no more dance.  After the 6th one, there was to be even no more breaststroke.  There is no gym class in school.  There is limited walking.  There is one foot, a size bigger than the other.  The “off sides” that that creates in her body can be quite painful.  But, the pool…

Oh, how my girl loves the pool.  She is an athlete.  She is a competitor.  And the pool allows her to be both of those things to the best of her ability.

For the 3rd time in the 4th year since joining swimming, this September brought a new coach for her, and a new group of teammates.  There was anxiety about the switch on so many levels.  But, as we always say, life has a funny way of working out.

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This coach is a perfect fit for her.  They practice hard, and often.  He is structured, and firm.  But he is compassionate, and constructive.  He watches.  There are sometimes 50 or more swimmers in the pool when he coaches, and I swear he does his best to make some comment to each of them every practice.  And, after they compete, his feedback always connects to practice.

And practice, for Meghan, has not been a problem.  While maintaining a “Pupil Path” account that no one could ever critique, and planning a major fundraiser, and looking for high schools, and managing doctors appointments, and a mom who doesn’t feel quite herself, this girl has, most weeks, attended practice, Monday, Thursday and Friday afternoon, as well as Tuesday, Friday, and Sunday morning.  Quite literally, swimming is good for her health.

Swimming can be a very solitary sport.  It takes a good deal of mental toughness to stare at a black line for hours.  Interactions with teammates on deck or during dryland (out of water training) are cherished.

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Even then, as the “new kid” in the group, you can sometimes wonder about the relationships.  Meghan has been very careful not to share too much of her Cowden’s story with these swimmers.  She wants to be viewed as one of them, and she is doing a good job holding her own, all by herself.

And then there was today.  We were at a meet and she was scheduled to swim the 200 yard butterfly.  If you swim, no explanation is needed.  If you don’t let me give you a frame of reference.  For the group she swam with today, 72 girls swam the 100 yard freestyle.  10 signed up to swim the 200 yard butterfly.  It is not an event for the faint of heart.

Meghan feared disappointing, herself, her coach. me.  She was scared out of her mind.  So scared that it was out of character.  Out of character for a child that has had 17 surgeries, and countless tests. ER visits, and hospitalizations.  She was that scared.

And as the race approached I watched helplessly from the stands as she began to unravel.  And I watched with a grateful heart as teammates picked her up and put her back together again.

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The one who I can only say was acting as my angel, talked her right onto the block.  It only took a second of my attempt to video the race to see that something was terribly wrong.  There sat her goggles, first mid face, then in her mouth occluding her breathing.  In butterfly you can not break stroke.  At the end of the first 50 she stopped.  She was done.

My heart sank, and ached for her.  I wanted to pick her up and hug her, and take her back to the rocking chair I used to use when she was a baby.  But she’s 13 now – so I could only watch.

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The official came to her and asked if she wanted to try again in the next heat.  There were 2 lanes open.  She said yes.  And as they placed her in one heat, her friend, my angel, came to the official and asked if Meghan could swim, “in the lane next to me.”  She said yes, and as Meghan barely got settled on the block, another teammate flagged the official to wait a moment.  Meghan’s goggles were still not on.

The start went fine this time.  The goggles stayed on.  And she did it.  The whole thing.

By the time she got to her last 2 laps, most of the other girls were finishing.  But, then there was more magic.  There was cheering, from her teammates and strangers alike.  There was a push for her to get finished, to press on, and to make it.  So, she did.

I think I cried the last two laps.  I was struck by this child of mine, her life, the adversity, and the stubbornness.  The ability to not give up.  The desire to be normal, and to succeed. And as she touched the wall her team mate, that same angel, swam right into her lane and gave her the biggest, most genuine hug.

She did it.

Not too shabby for the first time.  And more than one teammate whom she respects greatly told her they gave her credit for getting up and trying it again.  So did her coach.

Meghan isn’t the “cool” kid.  She sometimes struggles a little.  But, she remains true to herself at all times.

Today, she got to see the kindness in others.  It was pure.  It was genuine.  It was unsolicited.  It was the best kind.

13-18 year olds can be a tough group.  But these kids showed today that when they are left at their “default” setting, when they are alone and see soemone hurting, they will choose kindness and compassion.

She is asleep.  Tomorrow is another day of swimming.  But, those events won’t cause this angst.

Gratitude fills my heart, that once again even at the toughest moment, good shines through.

And as she said goodnight, she told me, “Next month, when I swim the 200 fly…”

swimming

Endurance.  Persistence.  Stamina.

#beatingcowdens

 

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.

winning

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!

I WIN!

Yep.  Finally the taste of victory, and I will savor every single drop.  I know all too well these moments don’t come often.

Sandwiched between way too many doctor visits this summer, were a few other pressing problems.

We need a new roof.  Well, that one is cut and dried.  Pension loan.  Money available – job before the winter.

The bay window in the front of the house needs to be replaced.  That one, not as easy.  Lots of paperwork to participate in a class action lawsuit where apparently lots of these windows have leaked.  WAITING, and following up, and WAITING, as the wood shrinks and peels.

And then there was the car.

The car we bought in December after this happened in November.

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The slightly, (but not too fancy because who was ready for a car payment?) upgraded car, was the same make and the next model up.  It included more space, and XM radio capability, and the ability to have a navigation system in the car if we decided to subscribe.

If you have spent more than 5 minutes with me you know I can barely find my way out of a paper bag.

In the midst of being tired, and sore, and frustrated about the accident, I was THRILLED to have a navigation in the car.

The navigation was also connected to a blue tooth that went right through the car speakers.  My phone synced to the car and I could talk without worry.

I was thrilled – when I wan’t frustrated.  Or lost.  Or left dropping calls, or using my Iphone to take me places.

The car wasn’t working right very early in the game.  We ignored the “glitches” for a few months thinking it would get better.

Then in April it made its first trip in for service- only to be declared healthy.

Until it wasn’t.

Then it went back in.  This time a new radio.

power-of-persistence

Nope – that wasn’t it.

And so on and so on and so on and so on.

I drove more rental cars this summer than I ever want to drive in my life.

During one stretch the car spent 11 days in the service station.  They said they couldn’t fix it.

They called in the field tech (“Magic Wand Guy.”)  He said it was fine.

Nope.  Not fine.  My Iphone is full of voice memos of me trying to get places.  It took us 18 minutes to get started on the trip to the Philadelphia Zoo.

At one point I drove around the neighborhood giving it addresses.  It was 2 for 10.

And the sound on the blue tooth just kept getting worse.

never never give up

I didn’t know much about the Lemon Law, except that it exists.  But hidden inside the glove box of my car was a handy book explaining it.  It also gave me detailed instructions on how to file a claim (free of charge) to be arbitrated by the Better Business Bureau.

I read.

In between trips back and forth to NYC for doctors, I read and I learned, and I first tried a letter to Corporate Office.  The deliver confirmation says it was received July 22.  I wonder when it hit the shredder?

Next, I opened a case with the Better Business Bureau.  They closed it when “Magic Wand Guy” was coming to fix the car.  After he declared it fine, and before I even drove it off the property, I tried the system again.  Still broken.  I reopened the case.

When they ask what we would like to solve the problem my husband said, “Tell them we want a new car.”  I was really hesitant.  He explained his fears that the problem that no one could seem to fix likely lay deep in the central computer.  I trusted him.

Persistence Dog

It took so many hours to prepare the documents.  I wrote a narrative that was over 10 pages.  I faxed.  I Emailed.

All of this in between dragging ourselves back and forth to the dealer in between doctors.

Today it paid off.

I finally got that call from corporate.

They are replacing the car.  No out of pocket cost to us at all.  We went tonight to decide on a color.  The VIN number has been assigned to us.  7-10 days for the paperwork.

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Then I drop off the old car and drive away with the new one.

If you asked me in July if I would ever buy another car from these people again, I likely would have said, HELL NO!

However, with so much time spent together I developed a respect for the Service Manager.  And, in the end he was our advocate.

And tonight, while we filled out papers, with no commission to be made, the salesman was kind.  He was friendly and patient.  He was personable and understanding.  He got that WE matter.

We chose black.  Time for a color change.

black sonata

So many things go wrong, so often.  Hanging onto the anger will make you sick.  And, well – we haven’t got time for that.

Sipping my t+Chai I have peace.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

Talking on the phone to my father before he told me a story.  The day Meghan had her hand surgery, I had to go drop the car for the (millionth) time.  I was stressed about leaving her, and about the whole mess.  He told me tonight she said, “I don’t know why Mommy’s so upset.  She’ll get this taken care of.”

Tonight when I was so happy she said, “I never doubted you.”

Her confidence.  Whatever I did, by whatever grace I have it- I hope to keep it for a long time.  It’s quite the compliment.

I don’t keep a win/loss column.  It would be too distressing.  But tonight – we win.  And for tonight, that’s just plenty.

Make-The-Best-Of-Everything