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The femoral derotational osteotomy: The longest marathon.

14 Jan

I was born with Cerebral Palsy. In my case, I was born with my femurs angled inward and my hips tilted forward, and my angled femurs caused my feet to point in as well. Therefore, as a kid, when I would walk, I’d end up tripping over my feet, which made it harder for me to walk properly. On October 8, 2001, I had my first intense operation, a femoral derotational osteotomy. In some ways, it doesn’t seem like that long ago. The femoral derotational osteotomy was an intense operation in which the surgeons straightened out my femurs in order to allow me to walk straight. Rods were also used in order to keep my legs straight, but they would be taken out the following year once everything had fully healed. Even though the operation itself isn’t something I remember since I was asleep, I do remember the conversation I had with the OR nurses before I was put under. When the nurses looked down at me on the operating table and asked me to tell them about my animals, I proceeded to include the names of my pets at home as well as the names of all of my stuffed animals (and I had a lot). The nurses just smiled. They didn’t seem to mind.

When I woke up in the ICU, I had on two long-leg casts that were connected by a bar in the middle. I also had an epidural, so I couldn’t feel the full extent of my pain. However, those first few days in the ICU were spent not eating as much jello as I could manage, but continually getting sick from the anesthesia that had put me under during the operation. Trust me, having a nurse come over with a tube to suck the vomit out of your throat is completely disgusting, but it’s better than having the full taste of vomit in your mouth by waiting for it to come all the way up. Though I did eventually leave the ICU and Shriner’s after my first intense operation, I had to keep those long-leg casts on for the next 8 weeks, and during those 8 weeks, I became completely dependent on my parents. They had to help me shower, help me go to the bathroom, and help me change my clothes among many, many other things. It was only the beginning of the very long road to gaining my own independence.

In many ways, the femoral derotational osteotomy was the beginning of a marathon that would last much longer than just a few days. It was the beginning of the complete hell I would go through over the next 6 years until I reached the age of 15. By the age of 15, I had endured 3 intense surgeries, 15 years of physical therapy, and more pain that I ever thought possible. However, despite all of that, I persevered. I pushed through because I knew it was the only thing that would allow me to be independent. In the beginning, after that first operation, my parents were helping me do everything. I was completely dependent on them. However, by age 15, I was not only independent, I was gearing up to leave home the following year to attend an all-girls’ boarding school in North Carolina. Though leaving home was and always will be one of the hardest things I’ve ever done (not including my operations and all the intense physical therapy that followed them), it was also the best decision I ever made for myself. As with so many other things in my life, I’ve learned from it all, but more than that, I have been able to better understand the person I am supposed to become. Though I would have never imagined that I’d be using experiences from my own life in order to relate to and lift up other kids with CP and other disabilities, it’s beginning to feel like a permanent place I belong.

In the right hands, a memoir is the flecks of gold panned out of a great, muddy river. A memoir is those flecks melted down into a shapable liquid that can be molded and hammered into a single bright band to be worn on a finger, something you could point to and say, “This? Oh, this is my life.” Everyone has a muddy river, but very few have the vision, patience, and talent to turn it into something so beautiful. That is why the writer matters, so that we can not only learn from her experience but find a way to shape our own. -Ann Patchett, afterword of Autobiography of a Face

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27 Comments

Posted by on January 14, 2013 in Cerebral Palsy, Life, Writing

 

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27 Responses to The femoral derotational osteotomy: The longest marathon.

  1. photosfromtheloonybin

    January 14, 2013 at 8:08 am

    This is by no means a comparison to what you went through because it’s not even close, but I know what being sick from anesthesia is like. I had to have jaw surgery when I was 18 years old to correct an underbite, and they took an inch of bone out from each side of my jaw and then wired my jaw shut for 8 weeks. I was sick from the anesthesia with my jaw wired shut – yikes!! I know you are wondering how is that possible?? Well, it wasn’t – I had to swallow it back down again while my mom sat beside me with wire cutters just in case. You have sure been through a lot in your life Amelia, and I admire your strength. You are an amazing woman!!

     
    • ameliaclaire92

      January 19, 2013 at 11:54 am

      Wow. Ick. Yes, I definitely don’t miss being sick from anesthesia.

       
  2. Lisa W. Rosenberg

    January 14, 2013 at 9:28 am

    I’ve been gone from the blogosphere for a while, just because too many other things have been demanding my focus. I’m so glad I stopped by today. You never fail to amaze me with your honest, deeply moving, but never sentimental description of the events in your life.

    Inspirational as always!

     
    • ameliaclaire92

      January 19, 2013 at 11:55 am

      As always, thank you so much for reading, Lisa. I appreciate your support.

       
  3. frankoshanko

    January 14, 2013 at 10:38 am

    Wow. Nice job of painting a picture of your trials. Even nicer perseverance!

     
  4. Wilhelmina Upton

    January 14, 2013 at 1:55 pm

    I admire the strength you got and still have to have been through all of the procedures in your life. I was also sick from anesthesia after they cut out a part of my femur. I hated that feeling and I threw up the whole day after waking up.

    Keep being so brave!

     
  5. LA Edwards

    January 14, 2013 at 5:39 pm

    How brave of you to share such a private experience with us. You have preserved in a way most people could not fathom or even grasp. However, there are those who have likely gained a sense of strength from you knowing what you have endured through your disability and have not allowed it to rule or define you. You should be proud of such an accomplishment; persevering through such struggles is not easily accomplished. Yet you accomplished this difficult task with grace, strength, and perseverance. A role model for so many suffering from cerebral palsy or other disabilities. That it is indeed hope and possibility if one faces their demons, it is amazing what one can accomplish. And for a girl so young you are amazing. A beautiful person both inside and out, and I am confident those who read your story, follow your blog, and read your eventual memoir, will find the strength to reach out and follow through with their endeavor, having gained the understanding and strength that despite the pain and grueling years of therapy, can grow into a wonderful, bright, strong, and ambitious girl, such as yourself who lives everyday with CP and continues to amaze those around her with her actions and words each day. You have made a tremendous difference in so many peoples lives, including mine. You have given me the strength and knowledge I needed to understand what my daughter must be feeling and experiencing, even though she is unable to communicate those feelings and will never mentally be as bright as you, she is a person just the same with feelings and desires to be treated with respect and not feared because she is different. You are one of the lucky ones Amelia; I feel blessed to have had the pleasure of knowing you. You are a true godsend. Thank you for being so brave and for your perseverance. I firmly believe that your words will touch and inspire many, giving them the strength they need to preserve.

     
    • ameliaclaire92

      January 19, 2013 at 11:57 am

      Thank you so much, Louise. I really needed this today!

       
  6. 1pointperspective

    January 14, 2013 at 6:29 pm

    I’m a physical therapist. I’ve had quite a few of the kids I work with have derotation osteotomies, but I’ve never had one describe the experience to me. One of my patients just had spinal rodding surgery. I think it was the 18th or 19th surgery of his young life. People don’t realize what life can be like for others, unless someone tells them. Thanks for doing just that.

     
    • ameliaclaire92

      January 19, 2013 at 11:58 am

      I’m so glad I could share my experience with you to allow you to better relate to the kids you work with.

       
  7. Rosie Baillie

    January 15, 2013 at 6:28 am

    Thanks for sharing this story with us all, I really admire your honesty, strength and perseverance.

     
  8. mcwoman

    January 15, 2013 at 7:19 am

    Your testament is to your courage to face such pain and everything that goes with a serious operation. Keeping your eye on the prize of independence very brave. Not everyone has your strength and perseverance. I assure you, Amelia, you will be successful at whatever you decide to do with your life because of the inspiration you give to others. You go, girl!

     
    • ameliaclaire92

      January 19, 2013 at 11:59 am

      Thank you for your support. It means so much to me.

       
  9. P. C. Zick

    January 15, 2013 at 8:52 am

    Thank you for this post. I’m going through quite a painful physical experience right now – although I’m in no way comparing it to what you’ve gone through – and your post reminded me that we make a choice on how we handle those physical challenges. You’ve given me inspiration today to push forward despite the pain.

     
    • ameliaclaire92

      January 19, 2013 at 12:00 pm

      I’m glad I could be an inspiration to you. It’s what I’m trying to do by sharing my story, and I’m so glad to know you and so many others are getting strength from my words.

       
  10. N

    January 15, 2013 at 6:00 pm

    Thanks for writing this… it brings back so many memories. My experience was nearly identical to yours. Anesthesia- definitely not fun. And I hated those long casts with the bar across them, too!

     
    • ameliaclaire92

      January 19, 2013 at 12:02 pm

      Though I’m sorry if this post brought back some hard memories for you, it’s always really special to come across others who I can relate to in terms of my story.

       
  11. Laura

    January 15, 2013 at 6:30 pm

    I cant even imagine!

     
    • ameliaclaire92

      January 19, 2013 at 12:03 pm

      Though I lived it, sometimes it’s hard to really see how far I’ve come since then.

       
  12. belasbrightideas

    January 17, 2013 at 9:26 pm

    The longest marathon, indeed. As Laura just said, it’s hard to imagine. We all have challenges in this life, but sometimes it seems certain people get a bit more than their share. Blessings, Amelia.

     
    • ameliaclaire92

      January 19, 2013 at 12:03 pm

      As always Bela, thank you for the support. It means so much to me.

       
  13. Yael

    January 29, 2013 at 3:45 pm

    My daughter had bi-lateral de-rotational tibial and femoral osteotomies in June 2012. She was 10 and is now 11 years old (her birthday is today). She also had an SDR at 4 years old and began walking independently at 6 years old. She is doing really well right now, but she struggles every day, and I know she may have regression as an older teenager.

    I am always interested to hear the perspective of others who have been through similar things. As a parent, each operation and therapy decision is agonizing. Will there be enough benefit to compensate for the pain? Are we doing the right thing? I am so grateful to read your story. I like your terminology: “the longest marathon.” That certainly feels like what my daughter has been through. If you want to see her story, here is the blog I have been keeping about her journey: http://specialmommyblog.com/

    Thank you for your candid account. Best!

     

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