Deanna's Story
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What's wrong wth your FACE? ..... "What's wrong with YOURS!"
I don't think I had much early intervention...but did have SCM release surgery at 13. That late, you say? Yeah - that's late. So, my eyes and ears are crooked (one of the most evil words in the dictionary, by the way), I continue to tilt to the left, can't look behind me without turning, have really bad posture, and I have a complex about it : ) I grew up, (and still am) very sarchastic, generally light hearted, and with a good sense of humor...or at least I think I turned out that way. I am married to the man that loves me no matter what, and have two beautifully perfect daughters. I have a decent job, although I hope to someday be home for my girls, and live in a pretty good home and community. So, why dive back into all of this 'ancient history' now? Well, in January 2009, on my eight thousandth trip to Wal-Mart in my relatively small town, (where I did not grow up) I had just checked out our groceries, and as my two girls and I headed out the door, I heard a grown woman, (with obviously no tact, or compassion) say "DID YOU SEE THAT LADY'S FACE!" -- -- man, just actually typing that made my eyes fog up... whew...ok here we go... I tried to shrug it off. Who cares about that ugly lady? I only saw her back, but I'm sure she was ugly, at least for this story, she is : ). But, as I drove home I couldn't drop it. I've always had people look at me funny, I've gotten pretty good at ignoring it. I used to be quick with some witty comebacks, guess I'm off my game in my old age : ). I even had a little boy recently ask me why my eyes are crooked....can't fault a kid...it's ok...I told him I was born that way, and that not everybody looks the same. All the way home (it's maybe 8 miles, but seemed like 40 that day) my head filled with questions like: When are my girls going to ask me why my eyes are crooked? They are just kids...what will I say? Will their friends ask them about it? What will tell them? Will I be fine meeting their friends parents? Will these parents think something is wrong with me, and worry about their kid being friends with my kid? Do my girls always lean their head to the side when they talk to me? Am I making them do that?...I didn't realize this was going to be so hard to write... Do I only have my job, because my bosses felt sorry for me? (not becasue I am dang good at it). Am I really the only one like this? Did my parents just drop one hell-of-a-ball, or what? So finally, at 29, I looked it up! (What took me so long?) I honestly couldn't even remember what it was called. I had to dig out the papers I had saved from my surgery - the only thing that said what was wrong with me - to remember. Growing up, it was just the way I was. I was born that way - nuff said. I remember being made fun of constantly - some of the wildly original nicknames including - the leaning tower of nearing, the crooked faced girl, the girl with the messed up face, (nice right?), and lopsided freaky girl. So, yeah, I hated school, and camp, and mean people in general. I really can't remember ever breaking down about it. But, my parents had to know how much it sucked, I'm sure they just didn't know what to do. So, at 29, nervous breakdown, research and re-evaluate. What did it all mean? What is done about tort now? What should I have done differently? Is there anything I can do now? Is the back and neck pain, and bad posture from unresolved Tort? Did my surgeon know what he was doing - was he an expert? And, if I could ditch this face, would I? I have read too much (probably), really freaked out the poor doc at the local walk-in clinic (never heard a doctor say ummm so many times), and have yet to get any real leads on those questions. I did however find an outstanding group, on Yahoo of all places, where mothers of infants (and mothers who have been through it all already) reassure each other, answer each others questions, and remind each other that it is ok to fight for the best treatment for their children, and, to most of all follow their instincts. I have learned a lot about stretching and strengthening excercises for infants, starbands and kinesio taping, and even recently found one woman, who had surgery late like me, who is working through complications right now, (and hope it is all working out for her to find a place that will help). My idea and hope behind MyTortSupport.com is to expand the comeraderie and resources for parents connecting to each other online. Using online forums to ask and reply to questions keeps them available and easy to search for parents looking toward the next stage in their child's treatment, or newly diagnosed families. Including user mapping and profiles to chronicle how widespread toricollis is, allows others to see that parents are not in this alone. Hopefully, we can get some media attention, or at least physician involvement to allieviate some of the struggle parents are having with finding doctors who take Torticollis and early intervention seriously. I would love to have worksheets, handbooks, and videos guiding and reminding parents of what they can do. And, in the mix of it all, think I can squeeze in a little inner therapy for myself. If ALL this site does is encourage parents to do everything they can, with all of the resources available today, to resolve their childrens' torticollis before they start school, it is worth every effort I can put into it. And, even though I may continue to view the world from a slightly different angle, sit primarily on my right butt Please, join the group - share your experience and expertise, and email me with your ideas, input...well, just about anything. This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Take Care!
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For 29 years, that's the best I could come up with. Well, not to be quite so dramatic, I haven't actually said that for years...but I have said it easily more than 100 times in my life. My name is Deanna, and I am 30! (You can't capitalize numbers, but picture that 30 being really big : ) I was born with congenital muscular torticollis. Chances are, if you are reading this you know what I am talking about.
