I am fortunate to be surrounded by amazing parents on this journey. Each has taken a look at the devil and said not my child. This week I posed the question to our Lucky Cast Club support forum, what would you say to scoliosis if you had the chance? The letters are cathartic, cleansing and real. These parents have stuck it to scoliosis. I will feature a different family and letter until all the voices are heard. A big thank you to Amy R. and Kelly Johnson for the idea. Amy suggested we feature a piece outlining Scoliosis and it's dirty little lies. Kelly is my friend and founder of the Dear Robin project. As I explained in my Remembery Day post the Dear Robin project http://dearrobinletters.tumblr.com/post/10962696316/welcome-to-the-dear-robin-project allows those dealing with grief and loss to share their thoughts with their loved one whom they lost. I pray my friends find their Dear Scoliosis letters equally healing. Please understand these families are dealing with a constant roller coaster ride. The ups and downs will last a lifetime for all families dealing with this diagnosis. Thank you for allowing me to share this platform with some dear friends.
Volume 1, Written by Amy, Makenna's Mom (Horizontal Gaze Palsy and Progressive Infantile Scoliosis)
You've messed with the wrong family.
Everything I had ever heard of you before you announced your presence in our lives led me to believe you were a benign, stagnant orthopedic condition. Just a curve. A small wiggle. No big deal. What a good cover you've created for yourself. How many people have you fooled with these lies? How many people and families lived in the comfort of thinking you were no big deal? How many children were told to "wait and see" while you secretly, quietly began curving their little spines out of control?
I've done my homework. You are frightening. More often than not, your 'work' isn't evident without exposing our children to countless x-rays. No one can see the curve you've created from the outside. No one knows the effect you have on our kids bodies because they seem so active and healthy. We don't even know the effects you'll have because there is no 'typical' course of progression. You progress slowly in some, not all all in others, and rapidly and maliciously in others. Without warning. That's terrifying.
We are closer to winning this war. Makenna's curve was corrected with casting and she wears a brace now. You showed your ugly head at our last visit; taunting us with a small regression. But we press forward; testing you. Following our doctor's direction, we are spreading our wings.... wearing her brace only at night. What's happening right now in my little girls back?Have you seized this as an opportunity to reak more havic on my baby? I can't tell. But I will fight you. We all will.
You may be relentless, but so am I. I should warn you that the top of my prayer list each day is for endurance. The endurance necessary to stay strong and fight the good fight. And... you may have noticed; I'm not very quiet either. I am not ashamed of my daughter's condition. I am not shy about telling her story. I will scream it from the mountain tops if it will save another child from believing your lies. I obsessively check the google results for Makenna's website to make sure others can find it ~ and they do! That little website has found people as close as Iowa,as far east as Europe and as far south as Brazil. Your secret is out.
I tell her story to anyone who will listen. Even if they don't know they wanted to :) I work with young kids. Smart, beautiful, brilliant young children. Many of them want to be doctors. And they think of my girls as their little sisters. I have armed a whole generation with the knowledge of your true capabilities ~ your true nature.
Suck It, Scoliosis!