My family has always been there for me; in good times and bad. My older brother

Brandon was there for me when I came home from an exhausting day at school.

He was there for my first Christmas, and he was there for my first day of high school.

I was 4 when I understood that Brandon, now 21, was different. I understood it when we

walked in grocery stores and others would stare at him in confusion or disgust. Other times, I

would look into his classroom and see only a few other kids sitting there with him in walkers,

wheelchairs or assisted by teachers.

I was 7 when I realized cerebral palsy, microcephaly and other medical factors caused

this difference. It didn’t allow him to walk, talk or even see properly. 

That new information didn’t sink in until one evening while on vacation in Florida. My

family planned the trip and had saved up money, aside from Brandon’s medical expenses. On

that trip, my younger brother Nicholas, and I who was barely the tender age of 10 witnessed

for the first time one of Brandon’s violent seizures.

He was in a hospital gown. It smelled of ammonia, sterile alcohol and fear. The seizure

was so serious he had to be taken to the hospital to bring it down. I saw the IV pierce through his

arm, the pulse oximeter emitting a red glow on his index finger. I saw the horror on his face and

in his twitching eyes after the seizure subsided. 

I could feel it. Clawing at my brain. Like a thousand knives positioned at every point on

my head.

Sounds and sights I wished I had never heard nor seen because they were new and

frightening to my innocent ears and eyes.

The tears.

The screams. 

The pain. 

The thing was, I was so paralyzed with fear that I did not have time to cry. 

Hurtful Words

In grocery stores and parking lots, I would see kids staring at him. I could hear

whispering things. 

Words like “disabled” and “vegetable” pounded hard into my chest. But the word that

echoed in the back of my head the most?

Retarded.

It sounded hurtful on its own as a word, but it wouldn’t be hurtful to me until I started

middle school.

Other kids would say “He’s just special ed,” as a way of not feeling guilty, but at the

same time pointing it out he was different from everyone else. But there is nothing “special”

about lying on a hospital bed at night and hoping the suffering would end.

I felt everything that Brandon felt. Every insult aimed at my brother, I felt it cut deep into

1. From that point forward, after I heard the ugly things kids were saying, I promised to protect

him from anyone who made fun of or mocked him.

“

I felt everything that Brandon felt. Every insult aimed at my brother, I felt it cut deep into me.

— Shane Edghill

After that day, when kids would begin to stare at Brandon, I would stare right back. And

when they used those hurtful words, I no longer held my tongue. I said the things that Brandon

could not.

Family First

Sometimes there are obstacles in my life. When kids make fun of me or talk behind my

back, it sucks. But then I think about Brandon: the happiness he feels when I hold his hand or

when my whole family gathers around for movie night.  I think about my family that loves him

and me, and I hold my head a little bit higher each day. Those moments keep me alive and

passionate about playing in the high school orchestra, delivering speeches at debate

competitions, and it also impacts me as a writer.

Sometimes I wonder if there is more to Brandon than what meets the eye. He laughs,

cries and I know he’s smart and kind. He loves X-Men and the Fast and the Furious movies. He

loves the color red. But most of all, he loves his family.

My family and I love Brandon, but it can be difficult living with all of the limitations that

come with a person who has severe disabilities. We don’t have the freedom to travel often and it

takes a long time to even leave the house to go anywhere. The hardest part, however, is knowing

that he will probably die sooner than later. When Brandon was about 11 years old, his health

deteriorated, and the doctors sent hospice staff to surround him and care for him.

But somehow, it was as if the LORD had totally different plans for Brandon. He is now

21 years old. I don’t know when he will die. But when that time comes… 

I know it will be a sad time.

For me.

And for my family.

But what won’t be sad, are all of the happy memories that my family and I had with him.

His birthdays.

When my dad lifted him to pet a horse for the first time.

When Nicholas would crawl into his bed on a Saturday morning and play with him or lay

on the couch next to him in his wheelchair while they watched NCIS together.

All those times when I stood by and protected him.

A picture frame hangs on his bedroom wall with a montage of pictures on it. Some faded.

Others more prominent in detail. But what stands out the most on that frame are the lyrics to a

Phil Collins song, “You’ll Be In My Heart”. I didn’t get the meaning of it for a long time. I’ve

always thought that it was about a crying child in need of comfort.

I realize now after all this time that child was Brandon, and that even after he dies our

bond will never be broken as he will always be in our hearts.

Sometimes I tell Brandon before he goes to sleep — after my family tucks him in his bed — “You’ll Be In My Heart.”