Silence is… difficult and required

Published on March 4, 2017 by beatingcowdens3 Comments

I always hated charades. I stunk at it. And I still do.

I would have made a rotten mime.

Forced down time.

That’s what surgery brings.

This time it brings silence as well- for at least the next 5 days.

I kept moving so fast through the last few months that maybe I chose to ignore the problem growing inside me. I mean, ignore it in the sense of not writing about it too often. Of course, I’m not foolish enough to ignore it…

It was last spring, right about this time that I started to feel a little hoarse. I blamed it on spring allergies. Except it never went away.

It always struck me as odd because it came at a time during the year I was teaching less, and testing more so there was less of a strain on my voice.

Once spring turned into summer, I had to accept “spring allergies” wouldn’t work.

I searched for an Ear, Nose and Throat doctor in Manhattan, in my network. I read bios, and surgical articles, because everything seems to end with surgery anyway. So – I find its best to pick a good surgical record to start. Negative, or realistic? You can decide for yourself.

The first appointment I met the speech pathologist and the doctor. Both took baseline screens. I was told at initial consult in July that there was a “nodule” and a “striking zone lesion” on the opposite side. I was told it did not seem “typical” of the nodules teachers usually get, and I was told at that initial visit I would likely need surgery in the future.

But, first I was sent to vocal therapy. And while I scoffed at the idea, I know now how valuable the experience was. I have always sent my daughter to therapy when needed, and marveled at the success I saw with OT, PT, and Speech. But somehow for me, it was a tougher pill to swallow. At first.

I think when I wrote about this last I had connected with the Vocal Therapist, a gem of a woman, and a skilled class act in Speechless – October 2016 And then there was a quick entry here Laugh Out Loud – November 2016, Basically, the therapy helped enough to reduce the swelling, and reveal more issues. In October I was told definitively that surgery was in the future plan. I was told to continue to practice what I had learned in vocal therapy. I was told to rest my voice when I wasn’t teaching, and to employ a slew of new speech strategies and exercises. I continued Vocal Therapy through December. It has been no easy task, and I am FAR from perfect at it, but I can say I’ve made improvements at least a third of the time. Not too bad for a few months of modifying something I’ve been doing for 42 years!

The kids at school are used to my “tour guide” microphone, which helps me resist the urge to overextend my voice. We got in a routine, as you do when faced with a new obstacle. There is no other choice really, because as my friend says, we just “keep swimming.”

The plan was for me to return to the doctor in early April to set up surgery for the summer.

Except plans change. And it was getting a little hard to breathe. I felt like I had asthma symptoms more often than I am used to, and almost like a constant feeling of fullness in my throat.

I called the doctor to move the surgery up. We set February 20th as the date. Sometimes I just have to trust my instincts. Except I got a call that the OR was closed on February 20th and I had to take either February 17th or wait till March 3rd. And for a hot couple of moments I entertained February 17th. Except that “Jeans for Rare Genes 3” was set for February 19th. And, me being on total vocal rest while we entertained 120 people wasn’t a great idea.

I headed to see the doctor on January 31st and he found a new problem. There was now a very large polyp extending over the vocal cords. It was big and it had not been there in October. I asked about the likelihood of it being benign and I was told he was 99% sure it was all benign. I liked the odds, but still he agreed waiting till the summer wasn’t a great plan. We settled on a surgical date of March 3rd. Carefully calculating the number of days I’d need to be off of work before my return, we established it should still work.

Over the last few weeks I felt increasingly short of breath during mundane tasks. I stayed calm. I decreased my daily activity and moved a little slower. I knew we could make it, and we did.

So, “Jeans for Rare Genes 3,” went off as a successful event, and yesterday morning, on the first anniversary of the death of my beloved Pop, I headed to NYU to have my surgery. I left with the prayers of great friends and family, and the intense protection of one of my Guardian Angels.

The surgery went as surgery does. It’s strange how it’s not nearly as anxiety provoking as it once was. The whole routine has a wild familiarity, from the intake to the recovery room. I don’t get lost anymore and anticipate their words and requests. It’s odd, and a bit strange this job of #beatingcowdens. I walk dutifully to the OR and get settled under my warm blankets. I expect the IV, and the burning of the anesthesia. I know the mask will be the last thing I remember before the recovery room.

And its amazingly less nerve wracking when the surgery is for you and not your child.

So the biggest polyp had increased drastically in size since January 31st. It’s gone, and so are the other issues. We wait on pathology and a follow-up next Thursday. I’m on strict voice rest until Thursday at least, which requires me to really isolate. Talking to my family is reflex. And as I said before I stink at charades.

So we carry our phones. I put my fitbit on rest. It’s off an in a drawer. I’ve got my laptop in my room. I’m eating my Isagenix and diffusing protective oils. I’m organizing my brain- a little.

I’m trying not to get ahead of myself. I’m trying to address one day at a time. This is not my strength. It is in my long term planning that I strengthen my resolve and focus best on

#beatingcowdens.

For now it’s been about a day. I slipped on about 20 words total. Not great, but I never claimed to be perfect. The funny thing about talking is you don’t realize how much you do it till you can’t.

The laughing is even harder. My husband is funny. It’s one of the things I love most about him. How lucky and I as I heal to lament that my daughter wants to talk to me, and my husband makes me laugh? I’ll hide from my biggest blessings a few more days. #gratitude

Blessings, Irony and Tears… March 3rd

Published on March 2, 2017March 3, 2017 by beatingcowdens2 Comments

Tomorrow marks exactly one year since my Pop moved on to Heaven. I say that with confidence, because while my Pop was larger than life here, he was forever a humble, faithful servant of God and His people.

They say the first year is the hardest. I’ll say I’m not so sure. The first year is, by it’s nature full of “firsts” and figuring out how to do things for the “first” time. It’s about their first birthday in heaven, the first holiday, or family tradition they are not there to participate in. And, while this year was tougher than I imagined it would be, I’m not so sure it will be the hardest.

I should be embarrassed at 43 years old to be lamenting the loss of my 96 year old grandfather. I should simply be full of gratitude for the years we had, and for the time we shared. But, that’s not exactly how it works. You see for 42 years I knew NOTHING other than having him there. All the time.

All loss is tragic, to different people, in different ways, and at different times.

We lived in the first floor of their house for 15 years. I kissed them goodnight. They fed me breakfast. They came to our school shows and plays. He drove us to practice. Watching him love my Grandma showed me so much about how a relationship needs to be nurtured.

At the back door in the hallway was this brick door stopper- a reminder in philosophy and style.

We vacationed together for about the same span. Ocean City, New Jersey. Still to this date some of the best summers of my life.

We moved when Mom married, but that changed little. We didn’t move far. At first it was walking distance, then driving. Pop taught me how to check the fluids in my first car, and how to measure the pressure in my tires. He told me never to let anyone think I didn’t know what I was doing. He meant under the hood of the car, and everywhere else too.

He and Grandma drove to college to visit. We talked on the phone regularly.

And when I was back home, there were trips to their living room. I usually chose a spot on the floor where I could get a clear view of Pop in his chair. Come to think of it, I almost always sat on the floor. I think it was because even when I became an adult, he was larger than life in my mind. The view seemed more fitting.

There were stories, about the war, about the firehouse, about church and the bank. There were stories, and memories and laughs. There was, “Oh, boy!,” and “Come on!”

There was “Susie,” from a man who spent most of his life in a house with too many women. We even had numbers… “Susie 1, Susie 2…” And to the rest of the women, young and old, “Susie” was a term of endearment.

There were stories I heard dozens of times, and ones I only heard once. Yet, they all blur together now. How I wish I had recorded them. Or written them down.

What I would give to hear, “Who threw the overalls in Mrs. Murphy’s chowder?” just once more…

He was always there. Always. No matter what was needed, the answer was always yes. Always.

For a while I thought Pop was the tough one. I later learned that my larger than life Grandfather was not tough at all next to my little Grandma. Although, I was an adult the first time I saw Pop cry. And it didn’t happen often. Once was when Mom was diagnosed with breast cancer. The second was during a Memorial Service at church on September 12, 2001. There were a handful… but, those two I can picture as if they were yesterday.

When we bought the house in 2000 I wanted wood trim. He was 81. Every day for months I would come home from work elated as a new piece of trim was placed, around a door, window, or floor. There is no room in my home he hasn’t touched. And for that I am so grateful.

He took my husband in as his own. Immediately. He took my husband under his wing and let him extract years of knowledge from his brain. He taught Felix carpentry and wood working tricks, and helped him find confidence in his own abilities.

Felix looked after some of Pop's hand tools — Felix looked after some of Pop’s hand tools

My daughter loved Pop. I loved the way his great-grandchildren rejuvenated him. It’s hard for me to imagine that just 5 years ago Pop and Grandma were getting Meghan from half days at school.

Pop brought a smile, love and humor to our lives.

There are no words for Pop. Even as I try and images flood my mind – there are no words to do justice for the influence he had in shaping me into the woman I am today.

I always knew there would come a day when his body would no longer be with us. I always knew. Yet, I could never really have been prepared.

I wish I had listened a little more closely. I wish I had hugged a little tighter. I wish I had taken just a few minutes to record his stories. But, I watched. And I observed. And I felt the love. And I witnessed the compassion. And I watched a true Christian man support his family to the best of his ability, at all times, and in all places.

I will never forget the lessons he taught. His influence is etched in my heart.

Maybe that’s why I’m not sure the first year is going to be the hardest. I’m certain that not a day will go by without thoughts, words of wisdom, advice, or a smile from him.

I will treasure every single moment, even as the years will surely blur them together.

It’s a blessing to be 42 when you lose your grandparent, but it’s a blessing riddled with irony. If you’ve been lucky enough to be in my position – you know exactly what I mean.

Oh, and Pop, I could use some extra angel power tomorrow at noon. I could never do your memory justice without my voice, so lets keep that surgeon’s hand firm?

Love you always…

Rare Disease Day Video 2016

Published on February 28, 2017February 28, 2017 by beatingcowdensLeave a comment

In honor of #WRDD2017 I’m sharing Meghan’s video from 2016. So much of our lives with this rare disease is lived behind the scenes. Sometimes it’s an important part of advocacy to let it be seen, heard, and felt.

Music- “Pressure” by Billy Joel

“Corner of the Sky”- Pippin soundtrack

Rare, Invisible, Real – Jeans for Rare Genes 3

Published on February 20, 2017February 20, 2017 by beatingcowdens1 Comment

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!

A REAL Love Story

Published on February 13, 2017February 13, 2017 by beatingcowdens2 Comments

I’m not one for Valentine’s Day. Never was. It didn’t matter to me if I was dating or single, it just never made sense. The “Hallmark Holiday” seemed determined to bleed money out of people who shouldn’t have to work so hard to prove themselves one day a year.

If you love someone, prove it every day. It’s not about the big things. It’s about the things that matter.

Picking up someone else’s mess, doing someone’s laundry, a random hug, an “I love you” that’s real and spontaneous, treating each other respectfully all the time… and so on…

My husband and I decided years ago to exchange only cards on Valentine’s Day. I already know how much he loves me. We do what we can to get a little something for our girl, well, just because. And we, we try to get organized and celebrate our anniversary. The day we stood before God and our families and friends and pledged our “for better or for worse,” and “in sickness and in health.” Because those vows – they matter so much.

Tomorrow I will head to Manhattan for three of my annual appointments, carefully timed to cost me exactly one day off of work. I will see the oncologist, the breast surgeon, and the endocrine surgeon, with some blood work thrown in for good measure, and the results of a sonogram from Saturday checking on that bumpy spleen of mine.

I will return in time to have parent conferences at my daughter’s school.

Not a “romantic” day by any means.

I will wear a red shirt that says “Strong” and I will make it work with a smile.

Because, I will be thinking of this heart.

Last year in January, my Grandfather fell. It was after a trip to the grocery store. We later found there was stroke activity, and that January day began a slippery slope that ended with his passing on March 3rd. If you know me personally at all, you know my grandparents were larger than life to me. That’s it. They were 70 years married, and even though Alzheimer’s had largely robbed Grandma of much of her memory, my Pop loved her with his whole heart.

Last year, coincidentally, my grandparents spent Valentine’s Day in the nursing home at the same time. And, although I’m not totally sure either was aware of the date at the time, we were.

A few days after Pop passed, my uncle sent the picture above. He was cleaning out the linen closet and tucked in between some things was this heart. By every rational account it must have been purchased by Pop, for his love, on that day in January when he made his last shopping trip alone.

My Pop was a man that planned ahead. He was a man who always thought of his wife, and lived every day loving her with his whole heart. And my Grandma, well, she’s pretty special herself, and she’s always been quite fond of chocolate.

Nothing flashy, nothing fancy. But he saw the hearts early, and thought of her. That’s how he rolled. Always kissing her hello and goodbye, clipping roses from their rosebush, and doing what he could, even when there was nothing more he could do.

My newsfeed, and my heart have been full lately, of people struggling and suffering. The prayer list is long. There is pain and sadness and worry. But within, there is also love, and gratitude and compassion.

Life is about balance.

I’d rather spread out the love to last all year. I’ve got plenty to share.

For it is with love alone that we hold each other up.

Love for those around us, and those who’ve gone before, motivates us.

Grandma is still “here” but many of you understand when I say I miss my grandparents. The love though, the love and the example they set is imprinted forever in my soul.

It is with Love and Gratitude that we find the strength to remain

#beatingcowdens!

Rare Disease Day- Video Recap

Published on February 10, 2017February 10, 2017 by beatingcowdens1 Comment

World Rare Disease Day is February 28th. People all over the world will work to raise funds and awareness for over 7,000 Rare Diseases worldwide. In our house things are buzzing, as we prepare to teach the world a bit more about Cowden’s Syndrome.

There will be so much time to write. Soon. Right now we are preparing for Rare Disease Day 2017 and “Jeans for Rare Genes 3.” All the preparing brought me back to her video from last year. And then I looked at the year before, and the one before that. And I was struck by how much she has grown, not only in her technological ability, but also as an advocate, and a voice, and a human.

There will be no video this year. It was time for a change of pace. But, I thought it appropriate to post these here, now. She keeps me grounded. She keeps me going.

And then there was this…

http://blog.silive.com/gracelyns_chronicles/2017/02/inspirational_staten_islander.html

Together we remain

#beatingcowdens

Enjoy!

Inspirational Staten Islander 2016

Published on January 15, 2017January 15, 2017 by beatingcowdens3 Comments

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.

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

#BeatingCowdens!

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

To Do Lists, Digital Footorints and Random Thoughts

Published on January 7, 2017 by beatingcowdens1 Comment

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.

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 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

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

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…”

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

Choose Positive….

Published on December 26, 2016 by beatingcowdensLeave a comment

The day after Christmas in our house is reserved for a blissful amount of peaceful rest. A few loads of laundry, a simple meal, late sleeping, playing with some new “toys,” recovery, and reflection fill the hours. It is a wonderful, necessary day to pause and recharge.

I am awestruck by how fast days blend into weeks, and months, and even years. My girl is now a young lady. A young lady of 13 years old with the fall devoted to High School Applications, academic honors, hours of swimming, and some drama (class) thrown in for good measure. It was a crazy season, but a remarkable, beautiful time of transformation.

I don’t get time to write as much as I used to. But, truthfully, you don’t need to hear from me all that often to follow along. The writing remains my way to sort out life. I feel fortunate that so many of you come along for the ride.

So much of our journey #beatingcowdens is couched in perspective. We talk so much about the realities of everyone’s life. We talk about the things people endure that we can not fathom, and we talk about how hard it is to have some of the conversations necessary in the life of my 13-year-old. We talk. Often. And perhaps that is the first of many blessing I have.

My girl has become a young woman through a path that is different from most her age. Notice, I deliberately chose the word “different” as we are careful not to measure things in “better” or “worse.” The medical drama unfolded at a fast, furious pace, most concentrated in the years from 8 to 12. And we held fast through each one, but then, slowly, the dramas began to slow down.

At first we didn’t want to say anything. There is the fear of “jinxing” the situation. When medical drama is your “normal” you don’t really know how to live any other way. It sounds bizarre. You want so desperately to be rid of it, but the relief of losing it would be so intense, that to relax and then have it hit you again could be crushing. So you stay on your guard. All the time. But sometimes when you do that you can get a little… I don’t know, isolated, alone, rough?

There is a security connected to living in a state of medical drama. At least you know what to expect.

But, it’s not a place to hang out when you don’t need to.

Meghan’s last biopsy was in July. The follow-up is this week. My last surgery was in August. And, in a turn of events here, I have spent the last few months in vocal therapy sorting out ways to work around the tumor that desires to strip me of my ability to communicate. We’ve had some success, and last week even amidst a terrible head cold, my voice made it with me all the way to Friday.

And it was on that very Friday morning, as I drove Meghan to a 5:30 AM swim practice, with my head-splitting and my nose running, that I told her how lucky I felt. She may have checked me for fever, to see if I had totally lost it. But I explained – a year ago facing Christmas break without her having been knocked down at least once by something major was an impossible dream. This year, she had done more than ever before, and seems to be getting stronger. That morning I was grateful that I was able to get my butt out of bed, to take her to the place she loves, so she could work on the sport she loves.

This fall we have successfully removed 2 stomach medications that were previously necessary for survival. And, we are well on our way to eliminating a third. There is nutrition, exercise, and natural alternatives in their place. And it is working.

She came home a few weeks ago with a perfect attendance certificate for the month of October. I save everything. I think that may have been her first. These are the things that keep us in perspective.

We have a “doctor cycle” among us now. The knee needs to be checked again, MRI, and two knee doctors. There are clinical exams, GI follow-up and endocrinology. The afternoons these next 6 weeks will be swallowed up with trips to NYC. I’ll add in some appointments of my own, as I prepare for vocal cord surgery, tentatively set, but not yet confirmed. We’ll keep swimming, literally and figuratively. We’ll hold each other up, and we will do something a little different. We will, instead of fitting out lives into the doctors, we will fit the doctors into us.

Raising kids, one, two, three, four, or more- regardless of gender, or age combination each holds unique rewards and challenges. We have our moments, my girl and I, when we challenge each other to the best we can be. Sometimes its deep conversation. Sometimes it’s a little less pretty. But, we do it. We learn and we grow together.

I find myself often, missing relatives who are not here with us anymore. I miss conversations, deep and thoughtful. I miss shared laughs, and the pride they felt and showed. I understand, and comprehend their lives are changed, their eternal lives are more beautiful than I can imagine. But, I still miss them.

I sometimes shuffle around a bit in circles in my mind, feeling a little lonely, a little unsteady, and a little unsure of how to break the cycle.

And even at those loneliest points I take solace at the people in my life who are there. Their own lives keep us from day-to-day interface, but they are there, forming that net that will catch me, or us, if we were to fall. They weave a web through our lives that give us such confidence and gratitude, that I can only hope they feel the same way about us.

As we begin to get heavy into the preparations for Jeans for Rare Genes 3, it is a time to get focused. I am not a huge fan of New Year’s Resolutions. A wise friend recently reminded me a calendar is not necessary to begin change.

Choose positive. That is my simple focus. I will not be perfect at it. But, I will work tirelessly. I will be positive, hopefully not to the point of irritating, but when given the opportunity to face a new situation, I will work to find the positive.

Cowden’s Syndrome will toss us curve balls for the rest of our days. I’ve never been much of a baseball player, but I plan to practice my swing. And just in case- I’ll keep a helmet on as well.

May the culmination of 2016 lead us to gratitude for all the positives it brought, and gratitude for the negatives as well. May it leave us with the reminders of the blessings in our lives. Only in appreciation of al of it can we ever move forward. And really, forward is the only direction I choose to travel.