To Do Lists, Digital Footorints and Random Thoughts

I’m not one for New Year’s Resolutions.  I don’t believe in waiting for a specific day to make changes.  If they are needed, wanted, or warranted – we make them.  Right then.  Otherwise, I’m all about just being your best you- every day.

Parenting a teenager is tough stuff.  Even when your teen is just a good soul, a hard -worker, a good student, and a compassionate human.

persistence4

There are people who would challenge me that we have it easy.  They give me the default model, that raising one child has to be easier than raising 2 or 3 or 4 or 5 or more…  And maybe they are right.  I will never know.  But, they won’t either.  That’s the point.

Raising our children, or living our lives is not meant to be a discussion of “harder” or “easier.”  There are challenges present in every single scenario that comes to mind when I think of EVERY family I know.  In this house we  talk a lot.  My girl and I, we talk about those other lives we know, and their battles.  And we send love and prayers and warm wishes, as they do for us.  It’s not a contest,  it’s real life.

2016 saw the results of two uterine biopsies of my then 12 and 13 year old, with results that left us uneasy, and in a perpetual state of “cautious waiting.”  It also saw me back in surgery, replacing less than 5 year old silicone implants because one had “fallen”  And then, it saw my clumsiness as I spent 6 weeks booted with a broken toe.

2016 saw loss in my family, as we mourn Pop, and are readjusting with Grandma in her new living space.

Yet, we made it.  We came out with a few bumps and bruises, but we made it.

2016 ended with 8th graders we know taking High School entrance and Scholarship Exams.  The next weeks will bring jubilation, laughter, and tears.

Yet, we WILL make it- all of us.

The “To Do” list on the yellow pad to my right is busy.  The fundraiser is about a month away and there is lots to be done.

There is also an MRI, a vascular surgeon, an orthopedist, an endocrinologist, and a gastroenterologist for Meghan, as well as Pre-surgical testing, a tentative surgery date, and a breast surgeon follow-up, an oncologist, and an endocrinologist for me.  All before February 22.  That’s IF no one requires additional testing for anything…

We will fit in the “regular” stuff too, like swimming, and meets, and school projects, and drama… well you know what I mean.

We are working hard to fit Cowden’s Syndrome into our lives, and not to let it RUN our lives.  It’s a subtle difference on paper, but a HUGE one in practice.

And when the thought of running a house that contains TWO people with a rare genetic disorder becomes overwhelming – we try to step back and count our blessings.  Because at the end of all days, regardless of our struggles, it is good for us, and those around us, if we can remain positive.  I’m not saying we’re perfect at it – far from it actually, but it is a goal, and an on-going work in progress.

It came up this week when we were preparing for the fundraiser and talking about social media.  Actually, it has come up a bunch of times since the iPhone became attached to her hand almost 3 years ago…

digital-footprint7

Digital footprint – how are you presented on the internet?  What if someone “googled’ your name?  Now?  5 years from now?  8 years from now before your job interview?  The whole concept of this blog has been discussed in depth.  Meghan, whether she likes it or not, at the age of 13 has an identity that is connected to her rare disease.  Now, don’t misunderstand me for a minute – a close read would CLEARLY indicate, she is NOT her disease, but she will never have the opportunity to deny the diagnosis.  That’s forever, and its important.

What she does with it, well that’s ongoing.  She’s made some pretty dynamic choices to date.  Sometimes she feels a bit like she has something to prove- so she does.

She’s been asking me for “snapchat” lately, and eventually I’ll give in.  But, I’m one of the mean moms who makes her wait.  Instagram is plenty to manage for now.

This week Meghan was nominated as “Inspirational Staten Islander of 2016.”

It prompted me to “google” my daughter.  So when I type in her name connected to our home town, these are the first links to surface…

How Meghan Ortega saved her Mother’s Life

12 Year Old With Rare Genetic Disorder Chosen as Inspirational Islander

Staten Island 9 Year Old and Her Mom are on a Mission….

12 Surgeries in 11 Years- Living with Cowdens Syndrome

Meghan Ortega- NYS Senate

I’ll take that top five any day.

And just for good measure, I switched to an image search.  These 5 were on the first page…

Meghan in her elementary school with one of her idols- Borough President James Oddo
Meghan in her elementary school with one of her idols- Borough President James Oddo
An old one - when Meghan was named "Hero of the Month" by Child Life after an early surgery
An old one – when Meghan was named “Hero of the Month” by Child Life after an early surgery
SI Children's Museum Achievement Luncheon Award
SI Children’s Museum Achievement Luncheon Award
Rare Disease shirts from the PTEN Foundation
Rare Disease shirts from the PTEN Foundation
One of my most proud - NYS Woman of Distinction, nominated by Senator Lanza in May 2016
One of my most proud – NYS Woman of Distinction, nominated by Senator Lanza in May 2016

And, just to be sure, I even tried Youtube.com, only to find a video made in February 2016

Apparently she has listened, carefully.  I don’t know what the future holds for my bright eyed activist.  I know she’ll continue to take heat from a few along the way.  I also know she’ll find the strength to rise above and press on.  Because, that is what we do.

Would she like it is she were named “Inspirational Staten Islander of 2016”?  Sure.  Will it break her spirit one way or another, absolutely not.  Her focus is, “If I win, we could get publicity to help raise money at the fundraiser…”

2017 Event Flyer
                                                                       2017 Event Flyer

If you’ve read this far I’ll tell you what I know about the poll I’ve linked you to below.  The voting takes place like a reality TV show.  I’m not sure how valid it all is, but there is a week of lots of voting.  It ends January 11th at noon.  Apparently you can vote many times before it stops you.  And then you can vote every hour.  So pretty much, if it crosses your mind, and you find Meghan inspirational, save the link and vote whenever it crosses your mind, until your device tells you to stop.

Regardless of the outcome, life will go on.  And we will continue on the same missions we’re on right now.

#BeatingCowdens together

Inspirational Staten Islander Poll – Vote all the way at the bottom

Moving Forward

May 16th for years has had a special place in my heart.

In 1985 my cousin Meghan was born.  I was in the 6th grade and giddy to get to know her.  I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.

"Angel Meghan" - 1987
“Angel Meghan” – 1987

Her feisty nature,  her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.

My daughter carries so many of the characteristics that endeared my cousin to me.  She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them.  She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.

My Meghan - Spring 2004

Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy.  I knew that day I had the prayers of my family, and the strength of my angel by my side.

I have a “thing” for dates.  I remember numbers.  Maybe this is how my love of math shows through.  I like answers, and things that are absolute, or make some sense.  Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating.  These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person.  They are all pieces of that every evolving puzzle.

I thought about the surgery this morning.  I thought about it being a full year since all my “girl parts” were officially gone.  I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me.  Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago.  And I got dressed with a smile.

happy hysterecomy

I thought about Angelina Jolie.  I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk.  I thought about how happy I am that she has brought genetic testing into light.

But a few things have really bothered me.

PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk.  I myself had been tested for BRCA1  years before I ever knew of PTEN. I was negative.  The genetic counselor who tested me did not even have PTEN on her radar screen.  I know its rare – I do.  But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks.  I am sure there are more that I haven’t learned about yet.  Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well.  Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.

I am also bothered by the haters.  You know the haters.  The “Monday morning quarterbacks.”

They have crept out in quantity and I have a few words for them too.

BUTT OUT!

butt out

If you don’t like the idea of a prophylactic mastectomy – then don’t have one.  Plain and simple.

If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.

When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do.  Then, maybe then you and I can talk.

damocles

Until then,  wish Angelina a good long healthy life.  Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.”  Get a feel for what we go through every single day of our lives.

You probably wouldn’t know us if you passed us on the street.  We are some of the strongest and bravest and smartest people you will ever lay eyes on.  We stop and smell the roses.  We hug.  We smile.  We laugh.  We get how fleeting life is.

May 16th will always be a significant day for me.

But, moving forward -so will every day.  The first year is over.  Now on with the rest of our lives!

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In case you are interested…

http://idioms.thefreedictionary.com/a+sword+of+Damocles+hangs+over+head (Sword of Damocles)

http://globalgenes.org/ (Global Genes Project)

http://www.rarediseases.org/ (National Association of Rare Disorders)

https://www.facebook.com/ptenworld?fref=ts (Facebook Page for PTEN world)