Deidre's Corner

"For the Little Girl Who Tried to Escape"



    Treacher Collins Syndrome.  They seem to be only simple little words you've scanned through a medical book, grasped the definition and forgot about it the next day.  However, those words mean much more when you're branded with the term.  You experience for the long hall - emotionally and physically.  I've thought once that perhaps I did something God strongly didn't approve of in one of my reincarnated lives and punishment in this life is to live with TCS.  "Some cruel joke..." I think.  "...a mistake, surely."  Now that I am older, I realize how lucky I turned out to be.  And maybe, I still don't know how lucky I am.

    My name is Deidre, I was born in 1986.  The delivery had been easy and successful.  But once I was brought into the world, the room's overjoyed feeling had ceased into hushed concern.  I was born with a cleft palate, recessed cheek bones and my skull structure was different (mostly my left side effected).  Even during the 80s, most doctors hadn't seen nor recognized any of the common traits in patients with Treacher Collins Syndrome!

    From what I was told from Mom, simple feeding time was difficult at best.  As an infant I would become too sleepy before I could swallow enough formula to keep me healthy.  Since I'd lost three ounces of my birth weight, the hospital had kept me for a week feeding me through a tube they could insert through my nose.  My parents resented the first hospital for not informing nor teaching them the proper way to feeding me; perhaps they didn't have the equipment, not enough employees or knowledge?  Only three days after I'd been brought home, I had be taken back to the hospital, this time at All Children's Hospital in Florida.  There, they educated my parents about TCS, provided and taught them a better way for feeding me.

    Even after closing my cleft lip, there remained an opening in the roof of my mouth.  I remembered as a kid, eating wasn't a problem, even with my under bite, I managed well.  Every once in a while, a piece of food would get stuck in my nose cavity and it was the be most annoying thing in the world.  All day I would try to get it out!

    I had countless surgeries in the past; some of them I do not recall (like the closing of the cleft lip, that was done before I turned one years old), and some I remember as if they happened yesterday.  My Oral & Facial Doctor, Dr. R, performed two surgeries to close off the rest of my cleft palate, between 1995 or 1996.  Later in 2002, he also performed the jaw surgery to fix my under bite.

    They did not wire my jaw shut; I still had my braces on at the time and used those dental rubber bands.  It was a surprise for me, they've used the rubber bands instead.  Having your jaw shut is no party either.  Communicating was no problem, pen and paper were always at hand.  The problem was eating.  It wasn't about how I was going to get the food through my shut jaw.  Due to my cleft, I have two missing teeth in the front.  It was the food itself.  You would think having your diet restricted to ice cream, all kinds of flavors that are available (no chunks, i.e. almonds, pecans, chocolate chips) would be a treat!  Mashed potatoes with gravy was good - until the fifth time it was offered and I just couldn't get past the first bite.  Mom tried all kinds of baby food, but I soon grew tired of that and no matter how much of it I ate, I was always left hungry.  Well, after a couple of days of this nonsense, I began to think about that juicy hamburger stacked high with dressings from my favorite steakhouse!

    I might have been terrified when little, but looking back at it now, it was worth it.

    I always think of Dr. R. and everything he's done for me.  This wonderful man who had positively touched so many lives was not physically well, himself, for several years.  He recently passed away and I feel as through I've lost a friend.  Part of his hard work lives on with me and I'll never forgot his dedication and determination to personally see me through my last surgery.

    Elementary and 6th grade had been difficult.  Other children thought it was amusing to make mean remarks or make fun of me, because I looked different.  I had low self-esteem; I'm not sure if it's an excuse for my bad grades, but my laziness wasn't helping either.  I can't use my hearing loss as an excuse, either.  I could hear pretty well.  I wasn't paying attention.  I'm not proud of my rebellious progress in the past and do wish I could redo the elementary years just for the grades.

    Sixth grade had been the worse.  Different school, different class setup and I didn't know anybody!  There were kids on the bus who pointed fingers.  A boy in the lunch room called me bad names.  I was pulling the same tricks in class as I did elementary - daydreaming, drawing instead of doing my school work.  Then, the most wonderful and loving woman entered into my life.  Mrs. M. is currently a teacher for the deaf in our county.  Let's be honest...When I first met her, I came to the conclusion that I didn't like her at all.  Frankly, because she was making me do my school work!  She knew when I was lying about certain things, like 'we didn't have the new spelling words up today' (which we really did) and made me pull out the assignment and do it!

    When seventh grade began, I wasn't aware of it at the time, but there was a sudden change in me.  Not only did Mrs. M. straighten my stubborn attitude on school, she built up my self-esteem.  We've became friends quickly and she became a second mom to me.

    Communicating is an everyday task.  I do not have good speech.  I end up sounding quiet as through I'm mumbling.  I'm currently working as Bakery clerk in a grocery store and I dread phone calls.  The minority of customers cannot understand what I am trying to tell them.  It's very frustrating too, when I'm working alone and no one's around to translate a message for me.  Just the other day, I had to embarrassedly ask for one of the Deli employees to speak to a customer over the phone.  I'm very sensitive about using the intercom too.  Hearing is not much of a hassle as speaking.  I can almost hear as well as any normal person with the help of my hearing aid, and I rely on reading lips too.

    I'm older now and see I'm lucky.  I could have ended up much worse.  Instead, God put me in one of the right families, who are full of love and care.  it doesn't matter if you have TCS, or whatever condition you own, if you have good friend and family by your side, that's what really counts.



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