Rolling
Through Life
I'm sure most people would assume that my life has been very different
from most. However, with everything I’ve been through, I've learned that no one
goes through their childhood without challenges. I was born with Cerebral Palsy
and it was all I’ve ever known. This is
who I am, and I accepted that at a very young age. Cerebral Palsy is a
neurological disorder that primarily affects body movement and muscle
coordination. Therefore, I grew up facing many struggles.
Although overcoming the challenges of
being physically disabled has been more than I could handle at times, it has
been equally fulfilling. I have lived my
life to the fullest so far and plan on doing the same in my future. I have
found much inspiration in so many others around me, and I have been blessed
with some rich life lessons due to my disability. I believe I have been an
inspiration to many others as well!
My early childhood years involved many doctor's
appointments, tests, and procedures. My extra-curricular schedule consisted of constant
physical, occupational, and speech therapy appointments. Instead of dance or
sports, I trained for hours on how to communicate through communication boards
and devices. I learned how to eat independently and do schoolwork to
accommodate my high muscle tone and spasticity. I struggled through an endless
amount of stretching and exercises that taught me how to balance and hold myself
upright in seated positions. There were always new orthotic braces, hand
splints, standers, walkers and other adaptive equipment. I don’t really
remember much from my earliest years, but the stories I hear from my parents
and family always involve me being a very happy baby. Apparently, I came out
smiling, and I never stopped smiling and laughing. My parents told me that I always
showed great determination in therapy and school. I amazed people around me, because
I hardly ever showed frustration at the fact that I couldn't do so many things
that most other kids were capable of. I do remember one of the important goals
was learning how to become more independent. My parents and therapists did so
much to provide me with the tools and support to become as self-sufficient as
possible. It is evident to say that my family did so much to give me all of the
normal experiences any other child would have by the ridiculous amount of
pictures and photo albums my mom has. They would tote me anywhere so I wouldn't
miss out on too much.
Free Bird
I would say one of my earliest memories
was getting to control my first motorized wheelchair. It was when I experienced
true independence for the first time. I was almost four years old, and I was a
very curious little child. When they delivered my chair to the therapy center,
they warned my parents that it may take quite a while for me to be able to
maneuver it on my own and they would just have to let me try it a little bit at
a time until I got the hang of it. The wheelchair was as tall as me, which was
only about three feet tall. The base of the chair was purple and the interior
of the seat itself was dark gray with my name embroidered on the back.
“Alright, Brookie, let’s try it out!” the
therapist said, buckling me.
I don’t know if I was too overwhelmed or nervous,
but the only thing I do remember is running into the wall and bursting out
laughing.
“Drives just like you, Katie,” my dad
laughed.
My
mom and the therapist became concerned then.
“Well, you can always switch it to manual mode ’til she gets it down,” the therapist
said.
Later that afternoon, I nearly had it
conquered. It took me no time at all to be driving that thing around
fearlessly. My parents took me to my grandmother’s house that first day to show
her my new chair. I was so excited to be in the wheelchair that I squealed and
quickly rolled off towards my grandmother’s backyard to explore. I went
straight to a small pathway which went into the woods. I could remember rolling
into the woods and just looking up at the sky and all the trees. The breeze
blew through my short white blonde hair. It was just me and the sounds of
Mother Nature. I became a free bird. I was discovering the world without being
pushed or carried by anybody. I went wherever I wanted to go for the first time
in four years. I stayed out on my little adventure until my mother called me
in. I remember my mother and grandmother’s eyes were filled with tears of joy
when I came rolling back giggling.
“I think she has it figured it out now,” my
dad said, laughing, when I came back and turned off the chair. Since that day, I
have been so grateful that my family and therapists gave me the opportunity of
learning what I am capable of.
Changes
My parents got divorced when I was four. I
lived with my mom, and I would go stay with my dad on the weekends. Being
shuffled between two homes was never easy. I always felt torn, because I wanted
to spend time with both of my parents.
“Why
can’t momma and daddy just make up and kiss?”
Frustration and confusion was all I felt. However,
I learned sometimes life changes for the better. When I was seven, mom and I
moved from Ponchatoula to Denham Springs. I was so nervous about
moving away from my friends and starting a new school. I am grateful that I ended up in Denham
Springs for the rest of my primary and high school years, though. The schools
were great and the people were even better. I made friends quickly and people
were really good to me. I didn't experience teasing or bullying.
I was
always in full-time regular education since kindergarten, and I was provided
with a great support system and many resources to help me keep up. For the most
part, I loved school and spent most of my free time on schoolwork. School
wasn't always easy for me though. I had to work a little harder to keep up
physically with my work, but I never wanted special treatment. I remember having
some teachers and students that underestimated my ability of achieving
academically. They would talk to me a little slower. There were even moments
that my mom fought the school with decisions like putting me in resource
classes or special education classes. I think people expected that I would not
be able to keep up, but I always persevered and came through. I never made bad grades, and I never did badly
on standardized tests. I did and still do struggle with math, but so do many others
with and without disabilities. It has just always been my weakest link in
school; yet, I always got through it. I remember hours of math using a pencil,
which was very difficult for me. I would be so frustrated and exhausted.
“Ugh, I messed up again!”
“Honey, won’t you take a break for a
little while,” my mom would plead.
“I’m fine, momma!”
As much I wanted to give up, I never quit
trying. I received “The Most Improved”
award for math in the fifth grade.
Majority of my teachers, principals, and
classroom aides were wonderful to me. They always believed in me and pushed me
to keep at it when I would get discouraged. Two of my toughest years were fifth
grade and eighth grade. I don’t know why but I just really struggled with much
of what I was being taught those years. I had Mrs. Lisa Bonaventure as my
personal aide through those years, and I can honestly say I'm not sure I would
have made it without her. Mrs. Lisa never let me fall behind. She would take me
to the library during recess, and go over dozens of practice problems with me
each week.
Unstoppable
Although there were times that I struggled
with missing out on some of the normal experiences others got, I have to say
that I was pretty brave considering my circumstances. I decided last minute to
run for vice-president for 4-H in fourth grade.
I didn’t expect to win. I just wanted to show my peers that my
disability didn’t stop from me being a normal kid like them. Plus, I was
running against Jacob Brown who always thought I didn’t belong in the club or
even in the classroom. So I went home
and told my mom about how I was running for vice president.
“Sweetie, are you sure you want to do
this?"
“Yes mom. I really want to.”
“Ok. I guess we should go get posters and
stuff for you campaign then.”
We stayed up really late putting together
a dozen great signs and ton of suckers with "Vote for Brooke" tags. The
signs were so bright and sparkly that you could see them a mile away. My best
friend Holli and I went around the playground handing out suckers and stickers.
I don’t exactly remember what I said for
my speech. I haven’t forgotten how
nervous I was though. My palms were sweating. My stomach was full of butterflies.
I tried to smile and be calm while my speech was spoken by my speaking program.
I could see Jacob trying to not to laugh out of the corner of my eye. I just
wanted to get my speech over and go back to sitting with my friends. It wasn’t long after the votes were collected.
“Can
I have all the candidates please come back up in front now?” Mrs. Kennedy asked. I rolled up and faced the
audience along with the other candidates.
“Our 4-H president is Sara Walters and our
vice president is Brooke Settoon!”
“No way!! I did it!” I thought.
The look on Jacob’s face was priceless. He
stood there like he was sucking on a lemon. It was a moment I would never
forget.
The Unexpected
I was always honored at graduations and
end of year celebrations with special awards for my hard work and
determination. In junior high, I was nominated for homecoming court. I was in
sixth grade and knew nothing about homecoming court.
“You
did what?” I exclaimed when my friends told me they nominated me.
“It would be exciting to see you rolling
down the field all pretty.”
“Whatever. Only the popular girls get
elected.”
The principle announced the names of the
girls who made the court and my name was called over the school intercom,
“Oh
my God!! I’m on the court!” I thought
“Only the popular girls, huh?” Jessica
giggled.
I am happy still that I got to experience
the excitement and the honor of being on homecoming court my first year in
junior high. I got to shop for the perfect outfit. I ended up wearing a
turquoise and brown dress with matching flats. I got my hair and nails done. My
hair was curled and styled in a great up do, and I had a French pedicure on my
nails. The entire night of homecoming court at the football game was like a
scene from a movie. I was all dressed up. Many cameras flashed and people
cheered as I rolled down the football field with my father escorting me. I even
got to ride in the Christmas parade in a red convertible my mom borrowed from
her friend Lee. My mom adapted the back seat with an adaptive chair I had. The
chair was covered in a very bright and unattractive blue vinyl material; so my
mother covered the whole thing with a fur blanket to make it look fancy and
more like me. After it was all done, I looked just like all the other girls on
the court perched on the back of the convertible waving and smiling. Being on
the homecoming court and riding in the parade are definitely memories that I
will always cherish
Sideline
I didn't make court again in the eighth
grade, but I was asked to be an honorary cheerleader for the homecoming game.
I
performed on the sideline with the squad and waved yellow pom-poms in the air.
I couldn’t stop smiling. I was front and center and I cheered as loud I could.
My whole family came and watched me cheer. Ms. Kemp, the cheer coach, even gave
me my own uniform, which was purple and white with yellow letters “DSJH” stitched
on front. I already knew all the cheers since my best friend Claire was
co-captain, and she showed me the cheers when she came for a sleep over. We
ended up winning that night. I really
felt lucky to get to do something I thought I would never get to do.
My Summer Place
Most of my best childhood memories came
from the summers I spent at Lions Camp. Lions Camp runs almost the entire
summer in Leesville, Louisiana for children with diabetes, and children and
young adults with mental and physical disabilities. I went on the weeks
specifically designed for those that are physically challenged, and it was
unbelievable how much they offer to the campers in those weeks. I was eight years old when I went for the
first time, and I ended up going every summer for ten years after that. I
remember how I felt that first year, being the first time I was going somewhere
far away from home without my parents. With the exception of email, parents are
not allowed to contact or visit their kids the whole week. The camp is a four
hour drive away from home, and I knew nobody there.
“Are you sure you want to do this?” my mom
asked when she dropped me off. “We can wait another year.”
Even though it was scary to be hundreds of
miles away from my family, I knew I would regret not staying and giving it a
try. I ended up absolutely loving it. I was never ready to go home after a week
at Lions Camp, shedding many tears at the end. I really felt like I belonged there,
surrounded by so many kids who were just like me.
The camp was huge and very accessible,
covering about ten acres of land. We slept in small comfortable bunk beds in
wooden cabins, and the food was always really good. I have never experienced
more excitement and laughter like I did at my first summer at Lions Camp. There
was a great swimming pool, and the counselors got all of us in every day with
numerous adaptive floatation devices. I learned how to shoot a bow and arrow
and how to shoot a BB gun. We learned how to make cool abstract art and tie dye
scarves in arts and crafts. There was a lake with paddle boats and fishing. I
caught a fish, and the fish slapped me in the nose when my counselor was trying
to unhook it. It was a small yellow perch and its skin felt so slimy. We played volleyball, basketball, and mini
golf on the big playground, all well adapted for every one of various
disabilities. My favorite part of the playground was the swing set, because it
was specifically for wheelchairs.
After every meal and event, we held hands and
always sang a song called “As Years Go By” because it was a “LC family”
tradition. Every night was a different event like Dance Party Night or Carnival
Night. Dance Party Night was always my favorite. I got all dressed up in acute
outfit brought from home. The DJ played great music, and I got asked to dance
by the cutest boys. I think the best part of being at Lions Camp was that I
made longtime friendships with special people like me though.
I instantly connected with Brooke Arnold
and Krystie Porche. They were in the same patrol as me. Brooke and Krystie were
both born with Cerebral Palsy like me. It was very exciting to connect with
girls who I could relate to. Krystie ended up calling Brooke and I “Thing 1”
and “Thing 2.” I would never forget how
the three of us rolled around and laughed together all week long. Brooke,
Krystie, and I are still very close. Brooke is a sophomore at Baton Rouge
Community College. Kryste is currently working on getting a full time job.
At the end of the week, the camp directors
planned a special awards ceremony that our parents could come to. I had mixed
feelings about seeing my family that night. I was excited to see them, but I
was sad to think I would be leaving with them soon. The awards ceremony took
place outside around a big blazing campfire. I ended up winning the “LC Love,” award.
Everybody cheered my name and my parents took pictures. After all the awards
was given, all the campers and counselors sang “As Years Go By” as a huge lit
up star appeared in front of us. My eyes filled with tears. I have never felt
so blessed to be a part of something so amazing. I don’t know what my life would be like if I
didn’t get to experience being at a place like Lions Camp.
Worth It
I
wouldn’t deny that I have always been optimistic majority of the time. However,
I can honestly say there have been moments where I just wanted to scream “WHY
ME, GOD? WHY ME?” One thing that I
struggled with the most growing up was having guys underestimate me. Like any
other girl, I crushed on guys and flirted with them. I was never afraid to go
talk to a cute guy. Liking a guy wasn’t ever easy like I wanted it to be though. They always underestimated me. I would get
the same response every time.
“You’re a cool girl, but I…think of you
more as...a friend.”
It was like the fact that I am in a
wheelchair made them doubt me as a person.
I hated it. I would sometimes go hide in the girls’ bathroom and cry.
With teary eyes, I would looked in the
mirror and think “I hate being
different! This is pointless! Nobody will fall in love with me ever.”
Although, it was difficult, I have learned
that I have only grown stronger because of it. God wouldn’t have put me through
it if he didn’t have a reason why. I knew
all the pain and frustration would be worth it, because someday somebody will
see what God sees in me.
Surprise Ending
High school had its own challenges and
came with many fears at times, but I persevered. I went to my senior prom by
myself. I was a little hesitant but I found joy in picking out the perfect
dress and getting fixed up to my best. I wore a dress that was asymmetrical,
hot pink with little accents of purple and orange. I paired it with a new hot
pink high heels with rhinestones. I never wore high heels for obvious reasons,
but for my high school dances my mom would remove my foot plates on my chair
and let me pick out the highest heels I wanted. I got there and ended up having
an absolute blast with all of my friends. The night ended with me winning prom
queen. I haven’t forgotten the moment I won prom queen.
“…And our prom queen is…Brooke Settoon!”
I
was totally shocked. However, the sound of cheering and clapping made me snap
out of my state of shock. I quickly grabbed my controller, and went to the
front. With a huge smile on his face, Mr. Jones, the principal, placed the
sparkly tiara on my head. The next day, I
had a hundred notifications on Facebook from people saying how I inspired them.
It felt so awesome that I was an inspiration to people. It made me realize that
the way I treat people does have a positive impact. I think knowing that I
inspired my classmates was the best lesson I learned in high school! Looking back to my elementary and high school
years, I must say I had a great ride.
Angel Wings
When I was seventeen, my parents and I started
my own foundation. It is called The
Brooke Settoon Foundation. I always wanted to help other people in my
condition, so my family and I decided to do annual golf tournaments at Greystone
Country Club. The mission of my foundation is to continue its efforts to keep
providing support to other families and organizations dealing with cerebral
palsy, like United Cerebral Palsy and Louisiana Lions Camp. We’ve had some very
successful tournaments in the past with much support. We’ve had various
businesses and families sponsor the events and individuals making up at least
fifteen teams each year play in the tournament. My aunt Janet and Uncle Melvin
cook their delicious jambalaya for all those who attend the event. My mom orders
event t-shirts with our sponsors and Brooke Settoon Foundation logo printed on
them. My logo is a heart with angel wings.
We have raised over ten thousand dollars most years. We have donated to
the Louisiana Lions Camp, of course, and also helped other families make
modifications to their homes such as a safer entrance ramp for a family with a
son with cerebral palsy. We have donated to Wheels to Succeed which is a
specialty bike company for disabled children and adults. I am glad to get to
help others like me!
What I am most proud of is how I have
found inspiration in my experience of living my life physically challenged. I
have made so many amazing friendships over the years, and what I get told the
most from the people in my life is how much I inspire them. I believe that is
my greatest talent I have developed through my childhood. I love to inspire and
see change in others. I am proud of my 21 years of life so far, grateful for my
exciting childhood and looking forward to my years ahead! I hope to continue
this ride with great success and continue to impact others along the way.
