Meghan Needs Your Opinion

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.

The Comeback…

“…There is no mountain you can’t face

There is no giant you can’t take

All of your tears were not a waste

You’re one step away…” Danny Gokey

We listen to a good deal of Contemporary Christian music.  There are other tastes among us, but often, especially in the car – we listen to this.  It’s been a few years since we’ve had a church where we all felt comfortable and at home, although we possess strong, deeply rooted faith.  This music helps keep us focused when things can otherwise seem blurry.

This particular song surfaced a few weeks ago.  Meghan was battling to make a comeback from knee surgery 7, and seven was NOT a lucky number.

When you’ve been through the operating room 18 times and it’s still a week before your 14th birthday – you can call yourself somewhat of a professional at recovery.

We left the hospital with our list of directions.  We went to the surgical follow-up.  We scheduled PT.  We even held an extra week before restarting swim.  There were crutches for a very long time – used responsibly.  So, when she had done everything right, and her body decided to push back – hard, she was understandably angry and very frustrated.

No one really had a solid explanation for the fluid that overtook that knee almost 5 weeks post operatively.  But, there never really is a solid explanation.  I’d like to say we’re used to it.  But, I don’t like to lie.

There were more crutches, and more PT with the BEST PT in the whole wide world.  (We LOVE Dr. Jill – because she works on the WHOLE kid.  She gets that they are more than the body part giving them trouble. I know of NONE quite like her.)  There was increase in strength and range of motion.  There was a return to (half) swim practices.

There has been diligent icing after swim.  There has been stretching and strengthening because, quite frankly, she WANTS to feel better.

We joked around during the month of June, how nice it would be if we could make July a “doctor- free” month.  We longingly imagine the same scenario every year.  What if summer could be time to relax?  What if we could take day trips?  What if we could come and go, and rejuvenate?

I just counted 20 medical appointments between us over the last 31 days.  There are 2 more tomorrow.

Chronic illness is a real drag at any age.  When it happens to a child or a teen it makes everything that is already hard about growing up – even more of a challenge.

When you are in an almost constant state of recovery, you can find yourself tired.  Fighting so hard just to get back to where you were can make you feel like a hamster stuck in a wheel.

Chronic illness, constant pain, surgical recovery, ongoing surveillance, and all the other “fun” things that accompany Cowden’s Syndrome – or any other “it’s sticking around FOREVER” illness can leave you wiped out.

It’s hard to build relationships, friendships, or even a social group when you aren’t able to do so many of the things people take for granted every day.  There are days you quite simply run out of “spoons.”

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

But, in life there are more times than not that we have choices.  I try to model for my daughter, but so often she models for me.  You can choose to sit alone.  You can choose to let pain, fear, anxiety and frustration take hold.  You can choose to be sad.  You can choose to be mad.  Or you can realize that life is hard.  Everyone’s life is hard.  Life is also full of blessings.

When you realize that this is your life, and you decide you’re going to make the best of it- that’s when you dig in. You climb up that mountain, one step at a time…

I admire many things about my daughter.  She is not perfect – neither am I.  But in her soul, there is a “Never Give Up” attitude that permeates all things.  There is a constant quest for equity and justice, not just for her, but for all she interfaces with.  There is a compassionate need to help others.  There is a desire to be successful in spite of her circumstances – not because of them.

She always says she loves to swim because regardless – she has to meet the same time standards as everyone else.  Somehow it makes each comeback a little sweeter.

No one else would likely know, or realize, or remember.  But, we know.

First year on the high school team.  The season starts right after school.  She’ll be ready.

That’s why we will always remain

#beatingcowdens

 

“…There is no mountain you can’t face

There is no giant you can’t take

All of your tears were not a waste

You’re one step away…” Danny Gokey

This video is worth your time…

 

Danny Gokey – The Comeback 
After a season of nightfalls and pushbacks
After the heartache of wrong turns and sidetracks
Just when they think they’ve got you game, set, match
Here comes the comeback
Just cause you laid low, got up slow, unsteady
Don’t mean you blacked out or bought out you’re ready
Just when they think there’s nothing left running on empty
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
You feel the lightning, the thunder, your soul shakes
Under the roar of the heaven, the tide breaks
And from the ashes you will take your place
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away
Just when they think they’ve got you game, set, match
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback