Inspirational Staten Islander 2016

An inspiration provokes a desire in you to be a better human.  An inspiration can be any age, race, gender or creed.  An inspiration speaks to your soul through their actions, and their behaviors.  Words are always secondary to actions.

A role model may be an inspiration, someone you want to emulate, whether they are family, friend, or famous.  Often we put the word “inspirational” to a sports figure, singer, or movie star, but all too often we are disappointed by those high up in positions of fame and fortune.

Inspirational people, the ones who change lives, tend to be regular people who we interface with often.  Coaches come quickly to mind as inspirational.  Teammates who are there to lift us up and share our shining moments and disappointments come to mind as well.  In some cases teachers can inspire us, by lighting a fire, or a love of learning, or a passion about a topic or a zest for knowledge.


I am fortunate to know many inspirational people.  Most of them would be confused if I named them.  They are typically the people out in the world doing their jobs, living their lives, and passionately giving their all to whatever task is theirs.

So many of you who read these words on a regular basis, inspire us to remain #beatingcowdens.

Last week I was notified that Meghan was nominated as “Inspirational Staten Islander of 2016.”  This nomination was connected to her selection as “Staten Islander of the Month”  in February 2016.  There was quite a list of remarkable, inspirational, every-day people on that list.  I read the article top to bottom and was truly, inspired.

Inspirational Islander Poll


But, Meghan is MY inspiration.  She is MY reason, my WHY.  I would not lie and ever say she or I are PERFECT, because no one is.  But we do pretty well together, supporting each other.  And, when I’m about done pushing, one look at her face inspires me to keep on keeping on.

There was a week of voting, by people who clearly felt a particular nominee was the most inspirational.  It was a week of watching the polls as family and friends voted alongside. By Monday she had a significant lead.  We were humbled.  By Tuesday afternoon as we sat in an MRI for her knee in Manhattan, she was behind.  Roller Coaster.  It was hard to react with the knowledge that each nominee indeed was inspirational. And,  winning or losing, would not increase or decrease the value of the other nominees inspirational acts.

Voting was to close at noon Wednesday.  I sat up Tuesday night to vote for MY inspiration, as often as I was allowed.  But, at some point I became very anxious, and I stopped and I prayed.  I asked for guidance as to when it was time to just walk away.  I asked for a clear sign.

At about 2:15 AM on Wednesday the 11th, I received a Facebook Message from Destinee Moe.  This young lady was running the poll right behind Meghan and I just wasn’t sure how it was going to end.  This is a text of the message.

Hello Mrs.Ortega I’m Destinee Moe one of the nominees for Inspirational Islander Of 2016. I just want you and your daughter to know how truly inspiring she is! I could never be as strong as Meghan 😊she going through a lot and still manages to smile! It’s truly an honor to be able to run against someone so strong 🙂 I wouldn’t want anyone else to win this race 💯 she truly inspires me to be a strong young adult ! Best of luck to both of you and hope everything is well with Meghan ❤️ keeping her in my prayers.

And I cried.  Right there in front of my computer screen.  There was the sign I had prayed for.  There was a soul so inspiring she was looking for the good in others she was racing against.  There was a meaningful inspiration.


I responded to her as best I could.

It’s funny I would catch your message at this hour, as years of parenting a sick little one, have left me able to function on not too much rest. I really appreciate your message, as everything I have read about you indicates you are of the same strength of character as my daughter. It is inspiring to me when young women like the two of you show leadership qualities at such a young age. This whole experience, win or lose, has been an incredible journey for her. Today she learned to balance her morning swim, with an honors schedule, and then a 2 hour MRI for the knee that caused her 6 surgeries and still gives her grief, followed by 2 more hours in traffic, significant homework, and keeping a close eye on the voting in between. This young lady I have is truly my inspiration, as her early diagnosis indeed saved my life. However, each story I read was inspirational and it renews my faith in people, and Staten Island. All the best to you as well. It will be behind us all in just a few hours. I have no doubt yours will be a name of influence to look for in the coming years. Stay true. All the best, Lori

She replied once more and I went to bed soon after.  When I woke the next day, Meghan held onto a lead into the noon cut-off.

By 12:45 there was a congratulatory message from Destinee:

Congratulations ❤️ I really hope this pushes her even more to be the strong Inspiring young lady she is. Have a bless day , Destinee

Meghan won the popular vote as “Inspirational Staten Islander of 2016,” and we all got a clearer sense that inspiration is all around us, sometimes coming out from the most unlikely places.


After all she endures on a regular basis, my Meghan’s one goal was to further awareness of Rare and Genetic Diseases, while getting the word out for her upcoming fundraiser.  Multi-tasking is necessary to follow her schedule.

2017 Event Flyer
2017 Event Flyer

Meghan remains humbled by the gravity of the congratulatory messages coming her way.  Just as she was touched deeply by the message from the nominee closest to her in the polls.

There are so many life lessons, so many inspirational people, so many teachable moments – if only we look.

Meghan attained the title of “Inspirational Staten Islander 2016” and she will use it as best she can to raise awareness of Cowden’s Syndrome, PTEN Mutations and other Rare Diseases.  She will also walk away with a few valuable life lessons.

We remain


Click HERE to read the ARTICLE! (It’s a really good article! 😉 )






Mother.  Father.  Daughter. Son. Spouse. Sister.  Brother.  Grandparent.  Aunt.  Uncle.  Niece. Nephew. Friend.

If we are lucky, we connect the word “Inspiration” with one or more of them in our lives.

It’s been a really long month. And on the surface we have been preparing for the Second  Annual “Jeans for Rare Genes” Fundraiser at the Hilton this Sunday, February 21st. ( TICKETS FOR THE FUNDRAISER – HERE )


My husband has been wrapping baskets.  My daughter has been soliciting donations, and publicizing the event.  She was invited to speak at a Young Republicans Meeting, a Junior Giving Circle Meeting at IS75, and she was invited to speak to PS30 in Westerleigh.  Tonight she is thrilled to be speaking at the Staten Island Giving Circle Meeting.  Staten Island Giving Circle

I have been trying to stay on top of vendors, and seating, and tickets.  But I have been distracted.  We have all been distracted.


Those two, in the center, my grandparents, are at the center of this family.  They are the inspiration.  It is their ripple effect that allows all of us to do what we can to make the world better.  They are married 70 years.  She is 95.  He is 96.  And until just over a month ago he lovingly cared for her with the limited assistance of my mom and a 4 hour a day aide.  He cooked, cleaned, shopped, did the laundry, paid the bills.  And endured a great deal, out of love.  Pure love.

My grandfather spent 4 years in service to our country during World War II.  He married my Grandma a few weeks after returning in December of 1945.  He became a member of the FDNY for 23 years.  They raised two children.  They acted as second parents for many years to my older sister and myself.  We watched Pop, a man of faith, not talk the talk, but also ‘walk the walk.’

I learned the meaning of inspiration through his humble humility.  I learned love by watching him kiss Grandma every time he left the house.  I learned generosity by watching him give of himself, unceasing, to neighbors, friends, and especially family.  He inspires my life, and daily inspires me to be a better person.

His health is failing.  In one month the transformation is utterly disturbing.  And yet, he managed the strength to mouth the words to “Jesus Loves Me” and the Lord’s Prayer on Sunday as my brother-in-law gave us communion.  I’ve been distracted by one of my inspirations.

inspiration 2

His stubbornness, one of his best, and most challenging qualities, is one I passed on to my daughter.

Most of you know her story well.  For those who don’t I’ll give you the shortest version I can.

She was born in distress, spent 4 days as the biggest, fiestiest baby in the NICU before heading home.  There was a year or more of colicky sleepless nights, which melded together with hospital visits, the first of many surgeries to come, developmental delays, early intervention, and so on.  By the time she was three I had CPSE telling me she’d never sit in a normal PreK or a regular school.  We read, and researched, and peeled away layers in ways that were sometimes conventional and sometimes alternative.  We found a combination of strategies that left my girl in an honors program early in her academic career.

The surgeries kept coming.  The doctors appointments were relentless.  The Physical Therapist Dr. Jill who loved her so much, pushed me to genetic testing.  There the diagnosis of PTEN mutation, or Cowden’s Syndrome changed things forever.

Now there was a name.  Now there was a reason.  But now there was so much more to be worried about.  Now people scurried and scampered about and whispered and doctors “googled” while we were in the room.  Now her diagnosis prompted MY diagnosis, as Cowden’s is inherited.  And so much of my own medical history made sense.

Four years ago I was pushed to undergo a bilateral mastectomy.  It was supposed to be prophylactic based on the insane breast cancer risks for Cowden’s Syndrome patients.  And then on pathology there was the breast cancer diagnosis, and the realization that my daughter saved my life.  Humbled.

life what happens and how you react

The surgeries persist.  And get more complicated as the years go on.  Life gets more complicated when you are 12 and in Junior High.  Kids don’t really get this life.  And well, they shouldn’t.  But it gets lonely.

Sometimes she gets angry.  Mostly she tolerates the loneliness.  Mostly she channels her energy.  She dreams of cures.  She knows cures take money.  So she spearheads fundraisers.  She talks even when no one listens.  She is grateful for her Cowden’s in the midst of the rare diseases we have seen.

She gave up soccer, and running, and dance.  She hurts after normal kid play.  She gets frustrated.  Then she swims.  Not to be put off, she found the place she can compete.  And she pushes herself to be better every day.

She does well in school.  Although it’s not always politically correct to talk about it.  I’m her Mom, so I can say it.

She gets up every day.  She smiles.  She reaches.  She inspires.  Me, and countless others.  I am one of the lucky ones who has been inspired by many – right in my own family.



So, a few weeks ago when the local paper asked for an inspirational Staten Islander, she was my natural choice.  And I wrote, honestly, and without a second thought.

When the paper came out asking for us to vote I read every bio.  And I was inspired.  By all of them.  Then Meghan read them.  She was so touched I had written about her, she told me she’s be proud to lose to any of them.

There was a Facebook post this morning by the daughter of another nominee.  Her Dad sounds like a stellar man.  He offered to do anything for Meghan.  He is kind and generous of heart.  The daughter is lucky, as I am lucky.  We have inspiration right in our own families.

Maybe we can all meet at the fundraiser Sunday!


You can read all about all of them and vote below.

Somehow, I think they’ve all won.


Losing the Battle – to Win the War!



Friday’s thrilling adventure at Borough Hall ended as so many days do.  So excited to tell her story, so amazed by her experience I thought she’d be on the phone all night.

But as we walked up the street to the parking lot she whimpered.  “My knee.  The old pain.  How could it still hurt with the Celebrex?”

Good question, I mused, as I tossed her a cursory answer about the weather, and people’s joint’s aching.

I left out the part about how MOST of those achy people are at LEAST 40 – not 10.  But she knows that already. Can’t put much by her.

never never give up

We headed home, but as things often do here the downward spiral had begun, and it was a quick one.

I soaked her sore knee in an epsom salt bath for some relief, but the migraine that she had been battling all through school was starting to win.

By about 7:20 she told me she was going to bed.  Never a good sign.

No fever.  No signs of “illness,”  but we are frustratingly used to this.  There is nothing tangible that any doctor can seem to figure out as to where all this pain comes from.  Yet it does.  All over.  It’s real.  It’s torturous to watch, and it frustrates the free-spirited agile athlete trapped in this painful body.

She woke around 9:30 this morning.  I was already at the bank.  The text simply said “headache.”  My husband is a man of few words.

When I got home at 11 to take her to her 12:00 appointment she was in a dark bedroom moaning in pain while Felix rubbed her head.

We tried some saline, some food, her morning pills.  No success.  No appointment.

I ran to the party we planned to attend as a family, to wish one of our favorite 5 year-olds a Happy Birthday.

I woke her at 2:30 like she asked.  The CYO meet was at 4.  The highlight of her week.

We tried a warm shower.  More saline.

“I just can’t do it,” she half whispered, half screamed.  “WHAT IS THE MATTER WITH ME?”

My stomach sank.  That was the proof positive that things were not improving.  She looks forward to every one of those meets.

After reassuring her that it’s nothing she’s done, or does… she told me to text her coach and tell him she was really sorry.

And she was.

Another fun event missed.  Another pleasure lost.

overwhelmed 4


My 10-year-old amazes, impresses and consoles me, as she says, “Cowden’s may have won the battle today – but it won’t win the war.”

She spent the better part of the day in her bed – willing away the body pain and the headache.

She doesn’t want to feel like this.  And I have to tell you – she handles it pretty damned gracefully.

No one she met yesterday would have believed this was the same kid.  From a full on powerhouse of a conversation with a respected elected official, to barely being able to lift her head.

That’s how we roll here.

That’s where her sense of urgency comes from.  She NEEDS people to know the real deal.  Whether they want to or not.

small battles

It’s 2:30 AM Sunday.  They have been resting for hours.  I had to sort out the banking mess and the subsequent paperwork it generated this week.  I needed a new list.

See my mind is so often preoccupied that I forget… a lot.

Because deep in my nagging Mommy gut, I feel like there is more.  We are missing something.  And I hope its minor.  Or that I am wrong.

No one can explain all this pain.  And lots of people have had the chance to try.

People wonder how I stay so organized, or why.  I think it’s because I spend a lot of time waiting for the other shoe to drop.

I’m over making plans.  I get it.  We can try to commit to things in advance, but our acceptances will always be tentative.  We have to make our decisions in the moment.

The win/loss column waffles sometimes, but we will by the grace of God, the power of prayer, and our love for each other, come out on top.  Failure is not an option.

We are BEATINGCOWDENS.  We will!

winning or losing