Tag: college

How was your summer?

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It’s my least favorite question connected with back to school. It sometimes makes me feel like I failed when I have nothing dynamic to report. And if I were to reply with honest answers, I would overstay the expectation of the question asker who was undoubtedly just being very polite.

This summer was not one for the record books. It included just under 50 medical appointments for the three of us. I know this because the billing errors that will follow and take up hours in the months to come necessitate me keeping a careful record of these appointments in my calendar of choice.

The highlights included a bright green cast removal, an in-depth surgery in May, three colonoscopies and 2 endoscopies between us, and a pile of appointments for the busted nerves in this left foot of mine. All the necessary maintenance on the home, with two separate AC repairs, 3 car inspections, a windshield repair, and a new navigation system helped handle any free time that might have popped up. Rare disease x2 meets real life.

Meghan managed to begin the Patient Care Hours that she will need in order to apply to school for Physician Assistant studies in a few years. She also took a 7-week “Professional Development” course, voluntarily and on her own dime where she and Ella continued to enhance their team.

Beautiful Ella

My girl was able to wean off one medicine, switch another to “as needed,” and change a third to one that better suits her, all time-consuming accomplishments as well. And while she is not running yet, she is comfortably walking a fast-paced 5k with ease on the regular.

And while we never got “away” this summer, we got to Broadway, and made a trip to her favorite NYC Bakery.

How was your summer?

I guess that like so much else depends on how I choose to look at it.

Rereading my own writing above, I guess I could say “accomplished.” At least I know why I am tired.

Our disease is forever. Sometimes there are extra days to fit in things that are not related to it. Sometimes there are days to fly free, to shut off the phone and shut out the doctors. This year, not so much.

But amazing things happen inside my little house. When this house is busting at the seams with 3 humans and 3 medium-sized dogs, it is exploding with love. I did not clean a single window, closet or curtain this summer. My house, like me, survived. But somehow its foundation keeps getting stronger. We raised a human who loves us enough to know she can escape to our “bubble” and rest her wings before flying again. The gratitude for that alone, that she CAN fly, that she DOES fly, and that she knows she can come back here to rest SAFELY before she SOARS again; that gratitude carries me through the most exhausting times.

This summer was a battle for so many I know. And it continues to be a battle for so many for physical, mental, spiritual, financial, and emotional health, this year it seems more than in my recent memory. The prayer list gets longer and longer. And sometimes I wonder why. Other times I am sure my head will explode if I try to overthink it. I think the struggles of all, especially the medical struggles, permeate your soul when you live with a rare disease and spend the core of your life weaving in and out of medical obstacle courses. That one is hard to explain, except if you know, you know.

We moved Meghan back in yesterday. Second year of college and time keeps marching on. This world is such a crazy place. Life is just utterly unpredictable.

How was your summer?

Move-in Day 2022
My Whole World
Three Furry Siblings

Maybe I will just flash a few photos and smile. No matter how exhausting and lonely this journey is, I somehow think we end up ahead. We three have a connection beyond words.

Hug your people. Be mindful of what you say. Laugh often. Love much. And then, laugh again.

#beatingcowdens

Love, Mom

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Before Meghan left for college last August I worked to think of creative things to send with her. One of the things I decided on was a playlist. Sure, we have some overlapping music tastes, but it was not to be about that. It was for songs that she would be able to listen to and imagine me either telling her or singing alongside her. Since I am a TERRIBLE singer, a playlist was definitely the most kind and efficient option.

I have listened to this playlist “Love, Mom” on Spotify about a million times. The link is here-https://open.spotify.com/playlist/2O76yoB451R0Fkz8flFtvm?si=bb3117761b0a4fca

I DO NOT OWN THE RIGHTS TO ANY OF THESE SONGS!

I listened to every song over and over before declaring it a fit. Then, I listened to the playlist, first in order, then on shuffle for weeks before I “gave” it to her. We have added songs through the months and even taken one or two out. But now it seems like a chronology. Some songs that will be life advice forever, and some that were epically important as she settled away from home for the first time

  1. “The Gambler” Kenny Rogers

“You’ve got to know when to hold ’em
Know when to fold ’em
Know when to walk away
And know when to run
You never count your money
When you’re sittin’ at the table
There’ll be time enough for countin’
When the dealin’s done…

2. “Humble and Kind” Tim McGraw

“Don’t take for granted the love this life gives you
When you get where you’re going don’t forget turn back around
And help the next one in line
Always stay humble and kind…”

3. “I Hope You Dance” LeeAnn Womack

“…I hope you never fear those mountains in the distance,
Never settle for the path of least resistance,
Livin’ might mean takin’ chances, but they’re worth takin’,
Lovin’ might be a mistake, but it’s worth makin’…”

4. “Here Comes the Sun” The Beatles

“…Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

Here comes the sun do, do, do
Here comes the sun
And I say it’s all right…”

5. “My Shot” Lin-Manuel Miranda (Hamilton)


“…I’m a diamond in the rough, a shiny piece of coal
Tryin’ to reach my goal, my power of speech: unimpeachable
Only nineteen, but my mind is older
These New York City streets getting colder, I shoulder
Ev’ry burden, ev’ry disadvantage
I have learned to manage…”

6. “I’ll Stand by You” Pretenders

“...I’ll stand by you
Take me in, into your darkest hour
And I’ll never desert you
I’ll stand by you
I’ll stand by you…”

7. “Have it All” Jason Mraz

“…May you be as fascinating as a slap bracelet
May you keep the chaos and the clutter off your desk
May you have unquestionable health and less stress
Having no possessions though immeasurable wealth
May you get a gold star on your next test
May your educated guesses always be correct
And may you win prizes shining like diamonds
May you really own it each moment to the next

And may the best of your todays be the worst of your tomorrows
And may the road less paved be the road that you follow…”

8. “How They Remember You” Rascal Flatts

“…You’re gonna leave a legacy, no matter what you do
It ain’t a question of if they will
It’s how they remember youDid you stand or did you fall?
Build a bridge or build a wall
Hide your love or give it all
What did you do?
What did you do?Did you make ’em laugh or make ’em cry?
Did you quit or did you try?
Live your dreams or let ’em die
What did you choose?
What did you choose?
When it all comes down
It ain’t if, it’s how they remember you…”

9. “Best Day of My Life” American Authors

“I had a dream so big and loud
I jumped so high I touched the clouds
Wo-o-o-o-o-oh, wo-o-o-o-o-oh
I stretched my hands out to the sky
We danced with monsters through the night
Wo-o-o-o-o-oh, wo-o-o-o-o-ohI’m never gonna look back
Woah, never gonna give it up
No, please don’t wake me now…”

10. “Rise Up” Andra Day

“…All we need, all we need is hope
And for that we have each other
And for that we have each other
And we will rise
We will rise
We’ll rise, oh, oh
We’ll riseI’ll rise up
Rise like the day
I’ll rise up
In spite of the ache
I will rise a thousand times again
And we’ll rise up
High like the waves
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousand times again…”

You get the idea… and a few of my favorites down further in the list…

15. “The Comeback” Danny Gokey

“…There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
Your one step awayJust when they think they’ve got you game set match
Oh here comes the comeback…”

23. “Fight Song” Rachel Platten

“…This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me…”

29. “Good To Be Alive” Meghan Trainor

“…It feels good, don’t it?
Living your life in this quick moment
And you never ever think it’s gonna go away, but I swear
I know you’ll wake up one day and say
Yeah, I got things to do (you’ll say)
Yeah, I got mountains to move
And it ain’t about how sad it could be
It’s about how good it should be
Come on, sing…”

32. “Let it Be” The Beatles

“When I find myself in times of trouble, Mother Mary comes to me
Speaking words of wisdom, let it be
And in my hour of darkness she is standing right in front of me
Speaking words of wisdom, let it be…”

35. “Defying Gravity” (Wicked) Idina Menzel and Kristin Chenoweth

“…I’m through accepting limits
‘Cause someone says they’re so
Some things I cannot change
But ’til I try, I’ll never know!
Too long I’ve been afraid of
Losing love I guess I’ve lost
Well, if that’s love
It comes at much too high a cost!…”

40. “Colors of the Wind” (Pocahontas) Judy Kuhn

“…You think the only people who are people
Are the people who look and think like you
But if you walk the footsteps of a stranger
You’ll learn things you never knew, you never knew…

How high does the sycamore grow?
If you cut it down, then you’ll never knowAnd you’ll never hear the wolf cry to the blue corn moon
For whether we are white or copper skinned
We need to sing with all the voices of the mountain
We need to paint with all the colors of the windYou can own the Earth and still
All you’ll own is Earth until
You can paint with all the colors of the wind”

42. “Do Something” Matthew West

“…I’m so tired of talking about
How we are God’s hands and feet
But it’s easier to say than to be
Live like angels of apathy who tell ourselves
It’s alright, “somebody else will do something”
Well, I don’t know about you
But I’m sick and tired of life with no desire
I don’t want a flame, I want a fire and
I wanna be the one who stands up and says
“I’m gonna do something”…”

45. “Magnify” We are Messengers

“…God be greater than the worries in my life
Be stronger than the weakness in my mind
Be louder let your glory come alive
Be magnified…”

51. “Stand By You” Rachel Platten

“…And oh, truth I guess truth is what you believe in
And faith, I think faith is having a reason
And I know, know love, if your wings are broken
Borrow mine so yours can open too’Cause I’m gonna stand by you
Even if we’re breaking down
We can find a way to break through
Even if we can’t find heaven
I’ll walk through hell with you
Love, you’re not alone
‘Cause I’m gonna stand by you…”

This one was added recently after Meghan brought it to me. It seems she has been paying attention to her father and I all these years….

56. “Like My Father” Jax

“…I need a man who loves me like
My father loves my momAnd if he lives up to my father
Maybe he could teach our daughter
What it takes to love a queen
She should know she’s royaltyI need a man who’s patient and kind
Gets out of the car and holds the door
I wanna slow dance in the living room like
We’re 18 at senior prom and grow
Old with someone who makes me feel youngI need a man who loves me like
My father loves my mom

I need a man who loves me like
My father loves my mom…”

So, with few words of my own, and many from talented musical artists, we remain

#beatingcowdens

Photo Credit Natalie Licini http://www.jerevele.com

#beatingcowdens Goes to College!

Published on by beatingcowdens10 Comments

There are normal feelings I have right now. Like when I look at my adult packing for college and all I see is this.

I have all the normal swings of emotion of watching your baby grow up. I feel all the things you feel after you give them roots, and by God’s grace they grow the most beautiful wings. There is normal anxiety, about them making new friends, and finding their way around and starting a whole new life. Without you. During a global pandemic. After at least a year of abbreviated, altered and just not quite right classes and other human interaction. In all of this I am in good company.

Then, there is the added layer of letting your medically complex child free.

This is the child who screamed with colic for over a year while people told me it was just normal. This is the child who had her first surgery at a few months of age, only to have a baffled surgeon come out of an operating room to tell me the hernia “wasn’t there.” That was just a preview of things to come.

This is the child who was so overwhelmed with GI pain she became a sensory overloaded mess. This is the child who missed milestones, and who had early intervention services of OT, PT and Speech that eventually graduated into an IEP that only terminated in June. Yes, June of 2021.

This is the child who needed a timer to move from one side of the room to the other in PreK as her loving teachers guided her.

This is the child who wanted to run like the wind, but could not ever figure out why it hurt. This child we would later find was managing an arteriovenous malformation in her right knee. That knee. Seven surgeries on that knee. Years with the best Physical Therapist in the land. But, we did stop soccer, and dance. And maybe that was for the best. Maybe she has her mother’s coordination.

This is the child who the kindergarten teacher told me in November was “pretty far behind.” I told her to encourage but not to push. I would be just as proud of her as long as she did her best. Then, that same child got glasses. And with the nurturing love of that kindergarten teacher, combined with God’s GIFT in paraprofessionals she soared. This same child, by March had had her first knee surgery, recovered, and was sitting with the top quarter of her class. This child does not like to be kept down.

This is the child, who spent years sick with chronic viral infections. This child hung with me through mainstream and alternative treatments. She pushed me to push forward for her. This child and I went through hell together. We learned each other on the Belt Parkway and the BQE. And somehow we found beauty on the journey.

This is the child, diagnosed with Cowden’s Syndrome at the age of 8, whose diagnosis prompted mine. This is the child, my angel on earth, who saved my life with her diagnosis, as my breast cancer was caught oh, so early.

This is the child who never quite found her way with other kids. They just didn’t “get” each other. Some were so kind, but couldn’t connect. Many were terribly mean and maligned and belittled and tortured and tormented her soul. This is the child who would not break. Trauma after trauma. Surgery after surgery. Medical procedures layered on top of one another. This is the child who sometimes cried in my arms and other times locked it all behind walls. This child. This medical life. There are experiences that shape you, that make you who you are.

This is the child who chose her high school. Deliberately. She wanted to be with kids who were more in touch with real life. This child grew, through love and resilience and inner strength and therapy to learn all about herself. This is the child who found her way to God and a few special friends, finally, and not at all accidentally, right about the same time.

This child waited years for the service dog. The one to manage the needs that had developed through a medically complex life. Ella and she met in January, and the love in their eyes tells me it was worth the wait.

I abbreviate the tales of this child and her journey. I do that because it would make it too overwhelming for you. I do it because the chronicles mostly sit in the last ten years of this blog and sometimes the gut wrenching journey need not be relived in intricate detail. I abbreviate for my sake, because I can appreciate that God’s biggest gift to me is allowing some really traumatizing memories to fade just enough that I can actually breathe as I recall them.

If you ever want stories, I have them for weeks. If you ever need to tell your tales, I am here.

This journey to college has been a long time coming. My college athlete and scholar got there on “Gratitude, Grace and Grit.” That full academic scholarship- that took the resilience to overcome 17 surgeries, remain in top honors, and recover the body every single time to return to the water. Through it this child turned her experiences into compassion and a desire to care for others. As she puts it, she wants to “do better” for people like herself. And there is room. Plenty of room to do just that my girl.

This journey took learning how to manage to moment to moment pain of Arteriovenous Malformations, as a new one has developed in her thigh, and channel that pain into usable energy. To look into the eyes of your baby, the eyes of your one and only 18 year old baby, and to know they will likely never be pain free, is a special kind of torture.

This child, now an adult, will have one more virtual visit, with one more new doctor, before we load the cars. And we have all the fun stuff, favorite sweatshirts, and a pretty comforter. We also have daily pill cases, morning and night, set for 4 weeks. Along with a literal bucket of the “just in case” medications to get her through. There are gluten, dairy and soy free snacks. There are toys and treats for Ella.

There is a whole lot of new.

My heart is full of hope. While the medical problems travel with her, she has reached an age where many kids have seen life, and are generally more tolerant of humans. My heart is full of hope for new experiences, for laughs, and friendships that will form.

My child leaves with less experience in some areas, and so much more in others. And my hope, my prayer is that in this place there will be balance.

I am with all my other mother friends, leaving their children at college.

My heart is with my mother friends who will never have the privilege to experience this “going away to college.”

My heart is with my mother friends whose babies no longer walk this earth, but cover us all with their angel wings.

I have learned from all of you.

And as I cry, because I will cry, I will also absorb the magnitude of the fact that this is happening.

As we told her doctor many years ago… “every step of the journey IS the journey.”

We remain #beatingcowdens

Meghan Needs Your Opinion

Published on by beatingcowdens11 Comments

Below is the essay my daughter Meghan wrote and is planning to submit with her college applications this week. She is planning to pursue a career in the medical field. She wants to “do better.” Please after reading, click the title you think best suits her essay. We appreciate your help and support for #beatingcowdens.

There is a blaring white light. I feel someone holding me down. A needle pierces my feeble skin. A wail escapes my mouth. I let out a plea. I sob as I writhe on the table. I cry out and beg for the extraction of the needle protruding through my neck. My response garners two more needles. The despair is overwhelming. Dread encompasses me. Then, it all goes black.

That is it. That is all I can recall from November 2, 2011, when I was finally forced to confront the challenges of my new life. 

At the ripe age of fifteen months, I underwent my first trip to the foreboding operating room, a place that would soon become as familiar to me as my mother’s smile. Being under the knife, in those bleak rooms where the sterile surgical tools sing in bitter harmony, is all I know. 

Life became a whirlwind of many operating room doors, many tearful goodbyes, many nights of my parents patrolling my hospital rooms, and no answers. 

Seven surgeries, six hospitalizations, and sixteen procedures later, I finally received a diagnosis. After seeing a geneticist, I was deemed a rare disease patient. I had Cowden’s Syndrome, a rare genetic disorder affecting 1 in 200,000 people. This disorder is specifically characterized by the commonality of both cancerous and benign tumors in patients, as well as vascular abnormalities and hamartomas.

I am seventeen years old. I have had nineteen surgeries. I have been admitted to the hospital thirty-two times. I have fifteen specialists. I have had over sixty scans, and more than one hundred blood draws. I have been poked and prodded so many times that my veins have developed scar tissue. I take over twenty types of medications just to get through the day. My weeks are filled with pain and tears. My months are filled with struggles and determination. However, I will never let the pain or my diagnosis stop me. I will continue to fight with every ounce of energy in my body to keep moving forward.

I have vowed to take everything I learned from each interaction in the medical field and carry those lessons into my activism and healthcare career. The opportunity to be a voice for my community is one of the biggest blessings of my life.

Following my diagnosis, the first organization I connected with was the Global Genes Project. Their symbol is the denim ribbon paired with the slogan “Hope, it’s in our Genes.” After playing an instrumental role in the creation of the first “denim ribbon” jewelry, my first idea for an awareness campaign was born. We started by giving out ribbons like the one I wear on my necklace every day. As the years progressed so did the complexity and efficiency of these events. To the blessing of all of us, the PTEN Foundation was created in 2013 and is a direct connection to patients like me. I have hosted seven events including virtual fundraisers, in-person fundraisers, and awareness campaigns. 

Despite all the years of surgeries, setbacks, and mental health struggles, I have accomplished everything no one, even myself at times, believed I could. I have held a 4.0 GPA throughout my entire high school career, my mental health has never been better, and I am being recruited to continue my athletic career in collegiate programs. I have overcome my unfortunate genetics and made the most out of the obstacles placed in my life.

I am not rare because of the diseases I was born with. I am not rare because I happened to lose the genetic lottery or even because of the collection of scars and crutches I have accrued throughout the years. I am rare because of what I have done with what life has handed me. The scars are badges of honor that prove I stood up and faced these battles head-on.