Tragedy Surrounded by Love

My cousin Kim stood, graveside, holding 2 flowers over the 7 month baby bump under her black dress.  Two roses.  One was red and the other was pink.  One was for her, and the other for baby Mackenzie.  It was time to lay to rest her husband, and the father Mackenzie will only know through the stories and photos a strong community will share with her forever.

Exactly a week earlier we gathered together in joyful celebration to shower Kim and Nando with love for Baby Mackenzie, due in November.  Little pink clothes, laughter, anticipation and love for a baby they waited so long to have.

The next day he was gone.  That fast.

He was one of five children, and part of a large family.

My family, Kim’s family is large as well.  Our fathers were brothers, in a family of 9 children, and although mine passed away in 2013, the love shared by all runs deep.  We are close to 30 first cousins thick.  The second cousins are starting to increase in number.

I sat in the funeral home in stunned silence most of the time.  But, the room was crowded, the lines were long, and the hugs and tears were all genuine.

I didn’t know Nando as well as many others.  As a matter of fact, I wish I had known him better.  Clearly, judging by community response and turnout, he carried the same heart as my cousin Kim in his larger than life body.

I can’t make a bit of sense out of any of it.  So I have to lean on my faith, and do whatever I can to offer support.  Sometimes tragedy just is…

Kim is strong, almost stoic.  She is a mother already, carefully shielding my newest little cousin from the anguish in her heart.  This beautiful baby will bring joy to so many.

We do not know the hour…

Tomorrow is not promised on this earth…

When we talk about #beatingcowdens, we talk about vigilance.  We talk about a warning system.  We already know what we are up against.  So often I can’t help but wonder how many people would give anything to have had warning.

It’s all perspective.  Sometimes I have to pause here and tell a story that is not about us.  That is not about Cowden’s Syndrome.

There is a generosity of spirit that lives in so many.  I witnessed it last week in a community outpouring of love.

My Uncle put it into words about his son-in-law.

Although I am not surprised.

I have received that generosity of spirit from Kim and Nando, and the family so many times.

Pay it forward.  The idea that you do good things with no expectation of repayment.  That’s how they live.  This week we got to witness a little bit of the good that comes from living life for others.

More than one person my cousin works with, sat with me at the funeral parlor to ask about Meghan and I.  I didn’t know them.  They knew of our story through Kim.

Currently our fundraiser for the PTEN Foundation is scheduled for 10/28.  I contacted my Aunt, and asked if we should cancel.  I needed to know if it was too close.  I would never ever want to be disrespectful.

The response?

Don’t cancel.  Kim plans to be there.

I guess that’s just what family does for each other.  And there is always plenty of room at our table.

Pull up a chair.  We’re in it for the long haul- together.

 

Rare, Invisible, Real – Jeans for Rare Genes 3

We were worried.  Attendance was at an all-time low.  We had picked a bad weekend, but it was too late to change it.

We took the event off “eventbrite” this year, looking to take the fees they collect and get them to the PTEN Foundation.

It took a whole lot of record keeping, but it was worth it.

We had an “Early Bird Special” and free T-shirts.  We opted for a new venue, a deluxe buffet brunch, and beer, wine and sangria for the grown ups.

After months of planning, of soliciting donations, of advertising, Emailing, and distributing flyers, we had exhausted every avenue we knew.

We received so many generous donations that were accompanied by, “I wish I could, but..”

We received so many well-wishes and positive thoughts from genuine people.

But, in the end we were looking at attendance numbers far lower than last year.

We had excellent baskets – Some were gathered by friends and family. Others were given as donations, and many were put together by my loving husband.

Meghan and I wrote out and carefully planned what we wanted to say.

She opted this year to stray from her pattern of creating videos, and she created a Power Point of the year in review instead.

But, as late as that morning the text and phone calls kept coming from people who could not make it.

We walked into the room anxious.  Not sure of how the day would go.

We should not have worried.

What this crowd may have lacked in volume they more than made up for in LOVE, SUPPORT, GENEROSITY, and COMPASSION.

They were from all areas of our lives.  There were family.  There were lots of cousins.  There were friends.  There were colleagues.  There was Meghan’s Physical Therapist, her math teacher, and her former paraprofessional.  There were friends of friends.  There was Charlie Balloons, and a DJ whose services had been paid by some dear friends as a donation.

There were 42 raffle baskets, and a 50/50.  The money generated just from those two things was mind-blowing.

There were 2 schools, PS1 with cousin Kim, and Holy Rosary with our friend Christal, that each raised over $400 at their schools for the cause.

We laughed.  We drank.  We ate.  We talked.  Kids danced with balloon creations.  There were musical chairs and fun.  There was pure love in the room.

When Meghan and I spoke there was silence.  Attention.  Focus.

Cowden’s Syndrome is understood by this crowd, because of us.

And there stood my daughter, telling this crowd of 100+ that she was tired of “Living with Cowden’s Syndrome.”  She “put Cowden’s Syndrome on notice.”  She told it, it was time to “keep up with her.”  She’s got things to do.  Places to go.  People to see.  She’s growing up right before my eyes.

Not long ago she was a scared and confused 8 year old.  Now she is a wise, and mature beyond her years, 13-year-old young woman.  She wants the PTEN Foundation to flourish.  She wants research, a patient database, and even a cure.  She’s 13.  There is time to get it right for her, and all the young ones being diagnosed after her.  She has drive and ambition.

She chose a song to end her speech.  She chose “Let it Go” from Frozen.  She toyed around with a few songs, but this is the one that spoke to her, at this moment.  This one got to her heart.  And you could tell, as she belted it out acapella.


In the end, as people with full bellies, and big smiles, hugged us goodbye, they spoke of “next year.”  They said this one was “the best yet.” We felt loved and full of gratitude.

And as we sorted through the finances, we were struck with something amazing.  Jeans for Rare Genes 3 would be making a cumulative donation of just over $12,000 to the PTEN Foundation.  This love, this event, these people, the generosity of so many, had generated an amazing amount.

Our hearts are full of gratitude.

A donation of over $12,000 to the PTEN Foundation.  Because of you.

Thank you for valuing a cause that matters so much to my family.  Thank you for loving us.  Thank you for supporting us from near and far.  Thank you for your never-ending generosity.  Thank you for your prayers and good wishes.

Because of you we remain #beatingcowdens!

Thank you!

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