Isolation

Published on March 19, 2017 by beatingcowdens3 Comments

I have had a lot of time to think about a lot of things since my vocal cord surgery on March 3rd.

One of the things I’ve thought about is how I feel a little bad for kids/teens today. I know most are over-indulged, and don’t lack for things. But, these last 16 days, having to be very limited, and conscious of my voice use, I’ve texted- a lot. And, I find it completely unfulfilling.

Please don’t misunderstand, texting has its place. At full voice, I use it often. But, if there is a topic where voice inflection, emotion, or feeling matter, I can usually talk it out. I can’t help but think that MOST teens today have little idea how to hold an actual conversation, and that the digital media age is limiting, and severely dampening their interpersonal skills. The constant texting leads to misunderstandings, misinterpretations and a general feeling of loneliness that just doesn’t have to happen. I know – because right now I am living it.

I spend a good deal of time communicating online. I use Facebook, Instagram and Twitter. I blog as often as I can. I “meet” others around the world with Cowden’s Syndrome. And I am so grateful. Typically, the internet is a major source of secondary communication. Except right now – it’s a lot of all I’ve got.

I am still at a point of severely restricted speech. There were significant cuts made into both of my vocal cords. I need to practice the exercises given to me in vocal therapy. AND, I need to be quiet. Often.

I can speak a few minutes each hour, in a gentle voice. But, the rest of the time I carry my phone to text my family. Conversation is brief, and sometimes frustrating by no one’s fault. Tension can rise quickly. You find yourself on edge. It’s a wild form of isolation to be present, yet unable to communicate the way you want to.

I like a nice quiet day alone as much as the next person. The thrill of being on my own to watch a few shows on Netflix was not lost on me. I have appreciated the silence I so often wished for.

But, like everything, I’ve also learned too much of anything is not a good thing.

I retreat to avoid my natural posture, which is lips moving. I am ALWAYS talking. So even when my family is around, I’ve taken to “hiding.” It’s necessary for the healing. But, I’m over it.

There will be about 4 more weeks of gradual movement towards full speech, all building to a (hopefully final) post-op visit on April 13th.

In the mean time, I appreciate your texts. I appreciate your Emails. I appreciate your support. I am trying to store up these times of silence to see if they’ll help me through when life gets too noisy.

“You can have it all, just not all at the same time,” a wise friend once told me.

I look around at adversity, illness, tragedy, and loss. I am aware of my blessings. I am grateful.

I am also honest. I live my emotions so they don’t get the best of me. I laugh hard, and cry hard (although both are frowned upon as the voice recovers.) It’s all about balance.

So for now,

#beatingcowdens

will have to be done quietly.

Richmond County Savings Foundation

Published on March 17, 2017March 17, 2017 by beatingcowdens3 Comments

If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.

This story Inspirational Staten Islander to host Fund Raiser ran on February 4th. On February 8th I was contacted by the Richmond County Savings Foundation. The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.

We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application. The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away. And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!

We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check. We got to meet Mr. Cesar Claro, who noticed Meghan’s story. We got to meet Ms. DeSapio who helped us so much via phone and Email.

Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway. It was just right for her to be there.

We gathered in a conference room with about 10 incredibly inspirational people. I loved how professional, yet casual the whole experience was. Amounts of grants were not discussed. Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.

Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder. She did great, as usual.

We got to hear from a teacher, and his school’s work with Habitat for Humanity. We heard from “Metropolitan Fire” and how the grant would help their organization.

We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.

We heard about the Moravian Church garden and their donations of food.

We met E. Randolph Wheagar from 2nd Chance Youth Empowerment Program, and we were inspired by their community work as well.

We met Jennifer Dudley from Staten Island Children’s Museum and learned about their efforts to “spruce up” the museum.

We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained. In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience. It was an intense 45 minutes!

Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy. If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy It is a genetic disorder affecting about 1 in 3,500 boys. The body lack dystrophin, and without it muscle cells become damaged and weaken. It is progressive. Michael is 11. They have 2 other healthy children. They are a family like ours. Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.

In the 30 minutes we sat across a table I felt inspired, and connected. I respect so much the positive outlook, and the awareness that even in strife, others have it worse. I respected the acknowledgement that every day is a gift, and life can change your perspective quickly. These are things we identify with in this house. Those are principles we live by.

Meghan and I often feel a little more “at home” in the presence of others with rare disease. While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap. And what also overlaps are your decisions in how to handle them.

I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.” And, “I feel like I was put here to DO something.” Watch this clip and reminisce with me.

Today we were full of gratitude. Today we were inspired by others. Today we were reminded of our own mission. Today was a continuation of an ongoing goal, and a reminder that it matters. It all matters.

We remain

#beatingcowdens

The Struggle (for Silence) is Real!

Published on March 13, 2017March 13, 2017 by beatingcowdensLeave a comment

Irony is spending 20 years wondering why your students sometimes struggle to be quiet, and suddenly, in one week, realizing how insanely difficult it is to be silent, AND, that it’s likely your need to talk constantly is part of the reason WHY you went into teaching in the first place!

Last Friday, March 3rd, this ugly thing was taken off my vocal cords.

And they, like so many other parts of my body, now boast scars.

So, I set up for a few weeks out of work, and a week of required silence. I never actually thought I was ready, which is a good thing. Because I wasn’t.

I do poorly on twitter, Rarely could I get out what I need in 140 characters or less. Absolute silence involved my cell phone in hand at all times. A few times the thing almost learned to fly, as the fingers, and auto-correct could not keep up with my brain. But, life lesson number, oh, I don’t know, 4 or 5, teaches us that life goes on around us. Ready or not. Even when you have to watch and not participate.

There have been many times since March 3rd I’ve been grateful that thought bubbles do not appear above my head.

On the 9th I headed to the city for my follow-up. After learning the pathology was benign, and read only “polyp,” I was relieved. The doctor was pleased with the initial healing and told me I could begin to use my voice. Slowly. He said 5 minutes an hour. That sounded high, based on what the voice therapist had told me in the fall, but I was grateful. I used the first 5 minutes up asking him questions.

I wanted to know whether this was connected to Cowden’s Syndrome. I wanted to know if it was likely to recur, if I needed vocal therapy, and when my follow-up would be.

Apparently, kind as he is, he could communicate on Twitter much more efficiently than I.

Cowden’s Syndrome? I don’t know. There’s not a lot of literature. This type of polyp is usually a traumatic event, something you’d remember. But, you don’t. And it grew really fast. I’m not sure.

Recurrence? Maybe. Depends how it came to be. Be careful with your voice.

Vocal Therapy? Suggested. Start on the 13th. (Whew… THAT I now KNEW I needed.)

Follow up – April 13th, a few days before I am scheduled to teach my first class post-operatively.

He was an outstanding surgeon. Matter-of-fact. Thorough. Efficient. But, I’ve known enough surgeons now to know, they don’t play with why. They just fix it and move on. He will “doctor” me, to the point that he will follow-up, and hopefully watch NOTHING ever grow there again. But, in reality this is now just another vulnerable spot on this PTEN mutated body. Because, I would stake certainty that it’s connected. There just aren’t that many coincidences in life.

So I left Thursday feeling good. I got 5 minutes an hour! I tried out my voice in the car. I tried it out at home. And then, I picked up my daughter at school, and I was so excited to talk to her, I easily let the conversation surpass 15 minutes. oops.

Later when I spoke to my husband I was well past 10 before I stopped.

This 5 minutes and hour thing was not for the faint of heart!

Sometime Friday I decided that stopping at 5 minutes was, nearly impossible for me to regulate. It was quite possible I could lose my mind.

And then I texted the voice therapist to set up my appointments for this week. And I mentioned the 5 minutes. And that I randomly out of nowhere had vomited for 20 minutes that morning. And her words were crystal clear. “DO NOT SPEAK AGAIN UNTIL I SEE YOU”

Sucker Punch

I went from a poorly managed 5 minutes back to a feeble attempt at silence.

I failed.

I spent 2 full days at a swim meet at with my girl. 7 hours each day away from home. I got to rest my voice, except when I felt compelled to tell her how proud I was. Or to wish her luck. Or to just chat… a little.

Some people really love chocolate. Me, I don’t mind chocolate, but I LOVE to talk.

We sat in therapy today and I got exercises for volume and pitch… all ironic because I struggle to tell the difference, but I’m an overachiever, so I try to do well. I sound like a complete loser, but I imagine it’s the same as me attempting something that requires coordination, like kick-boxing, or yoga. My poor vocal cords may not stand a chance.

6 exercises, 5 times each. Repeat 4x a day. And during those 4 hours DON’T SPEAK at all.

The revised schedule she gave me had 3 minutes an hour till Friday. Then, we’ll entertain 5 minutes again.

Tonight I pulled back into my office. To be silent I must be alone. I put some “breathe” into my diffuser, and tried to get my thoughts together.

Then I realized they ARE together. I just have no place to put them.

Tomorrow the house will be full for the snow day. Normally this would make me very happy. Tomorrow it is likely to make me a hermit.

Grateful the voice works. Grateful I tend to heal well…. But, some days

#beatingcowdens

is a real trip!

5 Years and “Sag-less” in my 40s

Published on March 5, 2017March 5, 2017 by beatingcowdensLeave a comment

March 5th. 2012

One of those dates that will stick with me forever.

On March 5th of 2012, I made my way early in the morning to the 10th floor of NYU. I signed all the papers with my husband by my side. I shook. I prayed. I was terrified. But, I had strong resolve, and there was no turning back.

Several months prior, my daughter, and then I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome. This mutation is responsible for increased tumor growth, both benign and malignant. It causes polyps, hamartomas, vascular malformations, and a whole bunch of other messy things. After our diagnoses, we began aggressive and age-appropriate screening.

Meghan was 8. I was 38.

They started with her thyroid. And immediately found issues.

At exactly the same time I was being sent through screening for the highest risk in my age group. Breast cancer.

I already had a mom- a 15 year survivor of bilateral beast cancer. (She does not have the PTEN mutation.) I had already had several surgical breast biopsies through the years, with increasingly foreboding pathology. But, I could not have been prepared for the surgeon I met in NYU Clinical Cancer Center in January of 2012. She introduced herself to me, having already torn through my previously received medical record, and said we should set a date. When I asked for what, she said quite simply, “For your prophylactic bilateral mastectomy.”

A little stunned, I caught my breath and asked why? “It’s not a matter of IF, but WHEN you’ll get cancer,” she said very definitively. “We need to get at it first.”

She sent me to her scheduler, who coordinated with the plastic surgeon. The date they came up with was March 5th. I asked why I couldn’t wait until the summer, and I was told that she thought that would be a huge mistake.

I called my husband, shaking. “Do what they say,” he calmly asserted.

So I left that January day with a script for a bilateral breast MRI – just to make sure there was no cancer- and a surgical date.

The MRI was negative. I am still amazed by that. Five weeks prior to the surgery there was NO FINDING on the MRI.

I met with the plastic surgeon, and much to her chagrin, I opted for immediate reconstruction, deciding to forgo the preferred method of tissue expanders. She reminded me that the results would be “imperfect.” I knew I could not delay my recovery by months. I had a daughter, a family, and a job to return to.

The surgery was uneventful.

I vomited repeatedly as I left the house that morning. I cried as I walked into the OR. My surgeon called me “brave.” I woke up with a strange feeling of empowerment.

I left the hospital 28 hours later. There were drains and wrappings, but there were things to do. I met on the refinance of our mortgage and managed parent teacher conferences with my daughter’s third grade teacher all before the drains were removed.

The day we went to have the drains removed, for whatever reason both Meghan and Felix were there. The plastic surgeon was the first to mention how lucky we were we caught “it” early. I was confused. She said, “The cancer. It was very early and far away from your chest wall.”

There was silence in the room as we all processed the word “cancer.”

She realized then she was the first to share the news. Our next stop was the surgeon. I pored over the pathology report and kept getting stuck.

I went from being a woman “getting ahead of things” with a “prophylactic bilateral mastectomy” to a “cancer survivor” in a moment.

I was told had I pushed the surgery to the summer, I would have been in a “fight for my life.”

I’ll always know I am more fortunate than any of the women who needed, chemotherapy, radiation, and other treatments to keep their cancer at bay. I have not traveled the road as they did. I will forever admire them. But, we are kindred spirits living with the daily knowledge that cancer cells once lived inside of us. That is a feeling, and knowledge that can not be explained. You either know it, or you don’t.

My implants lasted less than 5 years. The life expectancy is 15. This past summer they were replaced. Scarring was severe on the right side, and the scars needed to be broken up. A new pair replaced the old. Nothing flashy. Quick surgery, quick recovery. No big deal. Just a reminder of the reality that will follow me forever.

Today I celebrate that reality.

5 years officially Cancer-free.

Five years – and by the grace of God, countless more to go.

Five years- the first of many with sag-less silicone, size small shirts, and the ability to go bra-less without being noticed.

I celebrate my Mom – 20 years a survivor this year – my role model. My motivation.

I celebrate inside my own quiet- unable to speak as my voice heals. I celebrate even through miles of survivors guilt. I celebrate despite my broken heart as so many around me are taken by cancer. I celebrate because that is what they would want most.

Once you’ve been there. Lived it. Watched it. Seen it. You get a deeper sense of how precious life is. And you celebrate what you have each day. It’s not easy. Life can be messy. But, we do our best.

I celebrate to honor those who’ve been taken, those who work so hard every day to smile through, and for those whose diagnoses are yet to come.

Every day is a gift. As my friends at #stupidcancer would say – Get Busy Living!

#beatingcowdens

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

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.