Words of Wisdom

As part of our year-long Share Your Heart™ campaign, we asked members to share their journeys through essays and poems — and the response was overwhelming. The many entries received were powerful and memorable, providing a beautiful and sometimes heart-wrenching reminder of how challenging the journey can be — and how much it means to share that journey with others. In the next few pages, we’re showcasing the winners of the essay contest, and we invite every reader to visit the Share Your Heart website  (shareyourheart.live/essay-contest) and read them all.

WINNER, K-5: Gracelyn Schendel

Hearts are special but for Caleb, his heart is extra special. I bet it is rough. As his little sister, I have to not be rough. This past COVID year, it was rough. We couldn’t see friends! I’m so glad he is OK and not sick but being at home is not bad. Just because he is different does not mean he is not funny and playful. He is still fun! Did I mention he is very hilarious? I bet he feels very special. I feel like he is just right the way he is.

 

 

 

WINNER, GRADES 6-8: Grace Hollenbach

To say that my brother’s congenital heart defect has affected my life would be an understatement, in my opinion. I think a more accurate answer would be that it has turned my world upside down. Samuel was basically born with half a heart, to keep it simple. He was born when I was 6, I was just excited that I got to see my grandparents all the time and stay with them while he was in the hospital. He had his third heart surgery when I was about 9. I loved bringing my robot to the hospital and driving Dash (the robot) up and down the hallways, while Samuel followed with his oxygen hookup. At one point, I even wanted to do that for other kids, like the clowns that came into Samuel’s room. I wanted to be the robot lady. Of course, I was 9 at the time so that never really happened. Back before COVID19 hit, I never really wished that Samuel didn’t have a heart condition. I mean, I got to go to Photos courtesy of Candida Schendel, Grace Hollenbach Disney World when Samuel’s wish was granted by Make-A-Wish, so I wasn’t really complaining. As time went on, I had a pretty regular life. School, more school, summer, beach vacations and so on until March 2020. I’m sure you’ve heard others describe it as the time when everything shut down. Not seeing other people except through a screen.

The problem is, we don’t know how Samuel’s body will react to COVID-19 if he were to get it. He is vulnerable to other respiratory illnesses similar to it, so the outlook doesn’t seem too good. This is why whenever I touch a package that hasn’t been “quarantined” or wiped down or whenever I touch a grocery that hasn’t been washed, I mentally freak out a little. That’s the main impact on me right now. Just this anxiety that I’m going to be the one who gives COVID-19 to Samuel because of a misstep when I touch a package. It’s going to be my fault if I’m not careful enough. The fear that I’m going to be the one who impacts the whole family by transmitting a virus around. This is why whenever I touch a package that hasn’t been “quarantined” or wiped down or whenever I touch a grocery that hasn’t been washed, I mentally freak out a little. That’s the main impact on me right now. Just this anxiety that I’m going to be the one who gives COVID-19 to Samuel because of a misstep when I touch a package. It’s going to be my fault if I’m not careful enough. The fear that I’m going to be the one who impacts the whole family by transmitting a virus around.

School is going to be starting in the fall and I’m staying home. I’m going to probably see most of my classmates together on a screen. I’m nervous because I don’t want to be the only one on the screen, the left out one, all because of Samuel’s birth defect. The light at the end of this story, the possibility, what my whole family is hoping for, is a vaccine for Samuel. After he is hopefully vaccinated, I think that I am going to be much more grateful for the things I took for granted, like hugging my grandparents and hanging out with my friends. Little things that make a big difference.

WINNER, GRADES 9-12: Kaitlyn Hill

My name is Kaitlyn. And this is what it was like having a Heart Warrior for a sibling to me. My little brother David.

At first, I didn’t really understand what my brother had, or how bad it could get. But as the years went by, I started to pay more attention at his appointments, and me and my family joined Mended Little Hearts and went to their meetings.

Then I became confused. How can someone so young be so full of life while dealing with a life-threatening condition? Everyone we’ve ever met has described him as someone with a big smile. Someone who when entering a room lit it up with light.

It got scary at times, there were times he went to the ER frequently. We were lucky enough to get 15 years with him. But even then, it was far too soon. When he was dying, that was when we found out just how many people cared about him. It was overwhelming. So many people helped us during and after his passing. It’s hard, waking up and seeing your siblings, seeing that one of them is missing. But I’m glad I’m left with the memories, I’ll always have them.

I never minded that David had a heart condition. If you didn’t know that about him you would’ve just thought he was just a normal, cheerful little kid. I never thought differently of him as a sibling, he was actually usually the more fun one to be around. Always up for going out and doing stuff. It can be a challenge living with a Heart Warrior, but it was worth everything. He was an awesome brother.

 

WINNER, 18 AND OLDER: Mazen Hassan

Our Lives Are Changing Now
Our lives are changing now
Was my first feeling
Lump in my throat
The rest had me reeling

Our lives are changing now
The call came around three
Never expected that tone
“Love, can you talk, it’s me…”

Our lives are changing now
“Tubes are in the wrong place?”
Eyes became blurry, motion slowed…
What is this life we face?

Our lives are changing now
Why our little bean?
God is so cruel I thought,
God is so mean

Our lives are changing now
Bravery I would have to borrow
Wishing for a different fate
Hoping on a change tomorrow

Our lives are changing now
Multiple visits had transpired
Myriad of diagnoses and worries
Depression and fear and always tired

Our lives are changing now
Delivery day was approaching
Our hearts were in our guts
The uncertainty encroaching

Our lives are changing now
Baby boy then came screaming
Bluer than most that day
But Mom and Dad were beaming

Our lives are changing now
30 days of intensive care life
Surgeries, complications, tears
Lost all my strength for my wife

Our lives are changing now
Every day was something to fear
Multiple providers came by
Please, nothing more to hear

Our lives are changing now
We have to leave this cold room
No more conversations or thoughts
No more premonitions of doom

Our lives are changed now
They finally let us leave
A family of three against the world
Must persist, must believe

Our lives are changed now
Obstacles still in our way
But instead of hopelessness
We pause and we pray

Our lives are changed now
Welcomed a handsome baby boy
Looking back on our travels
Hard to believe we now feel joy

Our lives are changed now
Finally able to see the light
Numerous families like us
Struggling for a future just as bright