[Image on the left shows 22 year old Joseph Smith taking a mirror selfie, he has short dark hair, and is wearing a black long sleeved shirt with a white under shirt. Image on the right shows Joseph Smith as a baby in a striped jumper with
a severe bilateral cleft lip and palate.]
I was born at a local hospital here in Parkersburg, West Virginia with
a severe bilateral cleft lip and palate.
The moment I was born, the doctor said, “He’s not breathing” then left
the room and never came back.
I was immediately life-flighted to a larger hospital where the doctors
said it was the most severe case they had ever seen.
They said I was having such difficulty breathing on my own that I
wouldn’t survive long.
I was placed in an incubator and hooked up to machines to help me
breathe, for what my mom says felt like for years. After finally being
able to breathe on my own, they let my mom hold me for the first time.
The doctors told my parents I should be able to live a full life, but
with some complications. Complications such as never being able to
speak correctly and my voice would sound like it was coming from my
nasal passage due to the large gap in my palate.
My family didn’t fret. I immediately started speech therapy as soon as
I was able to talk and before I turned four, we had a speech therapist
come to the house to work with me.
I went to several speech therapists everyday from four years old up
until my freshman year in high school. That is until I got to high
school when they said there was nothing more they could do to help
because my speech was as good as it could possibly get.
My most memorable speech therapists were two of the nicest and caring
ladies I have ever gotten the chance of knowing. I was embarrassed to
have to go to speech therapy early on and they made me feel that by
going to them, it showed that I wanted to better myself, for myself.
Mrs Taylor and Mrs. Zablocki were two of many to have changed my life
forever. Going to them never felt like work or a burden. They made it
fun by playing games and just having casual conversations about our
days and lives. Without them I don’t think I could have done so well
with my therapy.
Now let’s back track a little bit to my surgeries. I’ve had over
seventy – 10 on my left ear, 12 on my right. I had a titanium ear drum
placed in my right ear due to severe hearing loss (a common side
effect to having cleft). After the last article I wrote for a cleft
awareness page I have recently gotten a hearing aid for said right ear
due to it becoming so great in hearing loss as well as the titanium
ear drum failing to do its job.
The rest of my surgeries have ranged from reconstructing my upper lip
and my palate by doing multiple bone grafts, skin grafts, and skull
grafts, to cosmetic surgeries where they broke both of my jaws,
aligned them, and wired them shut so my bottom lip wouldn’t stick out
past my upper lip as much.
They also did multiple skin grafts to make my upper lip as normal as
possible, as well as took chunks of my ribs, skull, and both of my
hips to rebuild my upper lip and nose.
Now that you know what has happened you can now begin to understand
the way I felt. They say you can’t miss something you’ve never had,
for me that is upper teeth. They also say that when something becomes
normality, it ceases being painful. That was my case with surgeries.
After awhile I quit taking pain meds all together. When they took a
rib out I didn’t take pain meds, when they bolted and wired my jaws
shut I didn’t take pain meds. The thought in my head was I’m going to
feel this pain regardless whether it be once the drugs wear off or if
I get it over with now.
My real struggle though was recovery, the after effect of surgery was
the worst. You’re swollen, you can’t do anything, and that
overwhelming amount of pity you get from anybody who looks at you
kills every fiber of your being. That’s the worst part about growing
up with cleft, when people look down on you and when you can’t do the
things that everybody else can because of your restrictions.
Growing up was difficult, I had friends but I had more people who
teased and ridiculed. People who didn’t understand so they felt the
need to belittle. Every summer I was sitting on the sidelines instead
of running around like a normal kid. I was recovering from surgeries
every summer and having more than I ever expected. I was lost for the
longest time and I put on a fake smile and a cheerful laugh to fool
I can remember when I was in fourth grade two “friends” thought it
would be hilarious to put me on the backpack rack by my hoodie hood
while the teacher stepped out for a second to help another teacher
across the hall. When she returned she was livid and I pretended as
though it didn’t phase me and that it was a big joke.
That teacher is and always has been my inspiration for becoming an
advocate to help others who have had a harder time dealing with
growing up with cleft than I had. At the beginning of fourth grade I
wasn’t sure that I would be able to attend due to having a large chunk
of my hip bone taken out to reconstruct my upper lip and I was unable
to walk without a walker. The second week of school I still wasn’t
there and told my dad that I wanted to go and just see how it went.
I remember vividly going into the music room where my class was and
having to use a walker. All my friends in my class greeted me with
open arms and were ecstatic to see me and showed no interest in the
fact that I was having to use a walker. After the music class my
classmates had gym so they went there and my dad and I talked to my
teacher Mrs. Maul. She made it very clear that she would go above and
beyond to make me feel comfortable during my recovery.
She made good on that promise and let me bring a pillow everyday of my
recovery to class to sit on so that my hip wasn’t uncomfortable, she
let me play pranks and personally played games with me in the
classroom while everybody was on recess. To this day I am grateful
that I am able to consider her as my favorite teacher as well as a
lifelong friend that I try my best to keep in touch with through the
Baseball was my outlet from all of my frustrations. My way of getting
away from my problems and forgetting everything and I have played for
the last eighteen years. Last year I discovered my passion and that
was to spread awareness for my birth defect/disability. I’ve done a
few things to which I got to share my experiences and help others who
have gone through what I did and may not have coped as well as I have
been and that has given me the greatest purpose in my life.
Looking back I wouldn’t change one single thing that I’ve been through
– it is what has made me to be the person I am today.
I’ve preached and preached this saying constantly: there’s always
someone out there that has it worse off than I do.
I’m writing this story now after 22 years of surgeries I’m finally
done with. I’ve been cleared of all my surgeries and I’ve overcome
things nobody deemed possible.
My goal in life now is to help as many more people as I possibly can,
whether it be with cleft or anything else for that matter, I’m willing
to do anything in my power to help anybody out there in need and I
encourage anybody and everybody to reach out to me if/whenever they
have a problem or just need someone to talk to.
The one thing I want to reiterate and make sure everybody in the world
knows is: you are not alone.
I dedicate this chapter of my life to you Mrs. Maul.
I am me, I am Cleft Strong.
Thank you, Joey for sharing your story with the world. 🙂
To share your story, email me at firstname.lastname@example.org