Monday, November 18, 2013

My Curved Journey

As many of you know, a few months ago I wrote a post entitled Ode To Paul about my amazing son and the impact he has had on my life. I also used that post as an opportunity to remind my fellow educators that there are many "Pauls" in our schools and lives and we should always keep that in mind when interacting with our students, staff and community members. 

Recently, my son wrote a personal essay as part of the writing workshop experience at school and he decided he wanted to share this essay with the world. The essay is about his journey with congenital scoliosis. Well, I have never been prouder to turn my blog over to someone else... our guest blogger this time around is my son, Paul, and his piece is entitled... 

My Curved Journey


When I was eight months old I was diagnosed with congenital scoliosis. When I started sitting up my parents noticed that I kept leaning to the right. My mom kept trying to sit me up straight but I kept tilting (my dad thought I was still learning to sit up properly but he was in denial). That is when my parents decided to bring me to the doctor to get my back checked out. The doctor examined me, took an X-Ray and discovered that five of my vertebrae were connected on one side. That was the beginning of my curved journey - my scoliosis journey - which includes my first surgery when I was 16 months old and my recent VEPTR surgeries.

Scoliosis is when your spine curves abnormally. Instead of your spine going down in a line it looks more like a "C" or an "S." Some kids get scoliosis when they are 12 or 13 but I was born with it, which is why it is called congenital scoliosis. Congenital means to be born with something. Congenital scoliosis is tough to deal with because for the kids who have it, they have many years to grow, which is why it is a curved journey.

After I was diagnosed the doctor kept an eye on my curve for a few months. When the curve got worse, it was time for my first surgery. When I was 16 months old I had a partial spinal fusion, which means that the doctor stuck together 5 vertebrae that were causing my spine to curve. Even though I don't remember it, my parents say I was strong and I recovered quickly.

My spine remained steady for a few years but by the time I reached first grade the curve was back and worse than ever!! This time the doctor put metal rods in my back called VEPTR. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. These rods have to be expanded every six months as I grow. Even though it is not easy, I am thankful that this surgery exists to help me and other kids. One of my dreams is to grow up and become an inventor and create the "No Back Surgery" injection to cure congenital scoliosis with one shot.

Although I have been through a lot, I live a normal life with lots of friends, lots of fun and a loving family. I know I can do anything because my past experiences have made me the strong person I am today! 

37 comments:

  1. Paul, you are a man beyond your years and a great inspiration! It was a pleasure reading about your journey. I wish you great success in developing a cure for congenital scoliosis. Thank you for sharing your story.

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    1. Thank you Alice! I am proud that you think I am an inspiration! Thank you for reading my story!

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  2. You are very wise, but life experiences can often do that! A wonderful blog post. Your family must be very proud!

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    1. Thank you - yes, my family is proud of me!
      Paul

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  3. Paul, thanks for sharing your story. It is obvious that your father is very proud of you and I can see why. I am very impressed by your attitude toward your difficulties, I doubt that I would have that good an attitude. Good luck on you future career, I really hope you discover a cure for congenital scoliosis.

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    1. Thank you William. I have this attitude because of my family - they help me get through this curved journey. And if I find a cure, I will share it with everyone!
      Paul

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  4. Paul, you are both courageous and wise. Thank you for sharing your story- and for teaching more about congenital scoliosis. With your positive spirit, there is no limit to what you will achieve.

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    1. Thank you Leah! My dad says that you and your husband are two of the most positive people he knows and I can see that in your comment - thank you!
      Paul

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  5. Paul,
    Thanks for both writing and sharing your story. It is important to remember that we all have different journeys through life and that you have already determined that you need to find a cure for congenital scoliosis. I wish you luck on your journey to help others.

    I love your essay. I learned so much from it! Thank you for being my teacher today!

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    1. Thank you for your comment Fran! I am glad you learned something from my personal essay!
      Paul

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  6. Paul, you are a remarkable young man. For all of us, life is a journey that involves overcoming obstacles. I am impressed with how you understand the past, live in the present and look forward to the future. This is a life lesson for everyone. Thank you for being brave to share your story.
    From the Cantiague School Nurse Mrs. G

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    1. Thank Nurse G- my dad has told me a lot about you and I know I met you! I appreciate your comment!

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  7. Paul,
    This is one powerful essay! I like how you explained your diagnosis and the surgical procedures you have had to help correct the curve in your spine. Because of all of the connections your father has made in person, on twitter, and on voxer, you have an extended family that wishes only the best for you.
    I wish you luck on your curved journey and on your journey to find the "one shot" cure.
    Jay

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    1. Thank you Mr. Posick. I am so proud to know that I have extended family thanks to my dad being on Twitter - that is a great feeling!
      Paul

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  8. Dearest Paul,
    Thank you for sharing your journey with the world. I am proud to know your story and will continue to keep you in my thoughts and prayers as I am truly blessed to know your family. Monica P.

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    1. Thank you Monica! You are one of the kindest and nicest people I know and even though I have not met you, my dad has told me a LOT about you. Thank you for your prayers.
      Paul

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  9. I enjoyed reading about your journey Paul. You reminded me that everyone has a journey and we need to take the time and listen. Thank you for sharing.

    Before I read your post I knew very little about congenital scoliosis, because of your post I'm much more aware. I've never had the opportunity to meet you Paul but I can tell you have a bright future. I hope you will continue to share your story and inspire others that are nervous about facing challenges. You've faced adversity head on and proved that a positive attitude will overcome many obstacles.

    Keep it up, thanks for inspiring. Also, keep an eye on your dad...he needs someone to look out for him : )

    -Ben

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    1. Ben,
      Thank you for your comment because I really liked reading it. I do try and keep a positive attitude and don't worry - I will keep an eye on my dad because he is the best dad ever!
      Paul

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  10. Dear Paulie,
    You are a smart and extraordinarily brave young man. You are wise beyond your years and a pleasure to be around. I am so glad I have the honor of knowing you!

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    1. HI LORRAINE!! Thank you for your comment because it made me so happy! Say hi to Don- I can't wait to see you again soon (maybe in Disney)!
      Paul

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  11. Paul,
    You are such a thoughtful and brave young man. It is clear how strong and smart you are, how positive you are, and how loved you are by so many people. Someday I hope to meet you and tell you how much you have inspired me. We have not met yet, but through your father (who is so very proud of you), I know so much about you and your courage and spirit have meant a lot to me. Thank you for sharing your story with us. I think you're really special and that you have a lot to teach us adults!

    Until we meet, I wish you great happiness!
    Sharon

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    1. Dr. Ravitch,
      Thank you for leaving a comment on my post because it makes me proud to know a doctor read my personal essay. I hope I get to meet you one day because my dad has said a lot of nice things about you. I want to come to the meeting when he defends his dissertation. Maybe I will meet you there.
      Paul

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  12. Paul, wow! You are amazing! What a powerful story! I hope you continue to share your (curved) journey with others. Your story needs to be told so that others who are facing the same types of challenges will have hope. Paul, do you believe you can change lives? I hope so because you can. You have a great role model because this is what your dad does every day....he changes lives and gives hope to others when they feel empty.

    I recently met your dad and he spoke so highly of you. I can see why. Keep believing in yourself because by doing so, you will help others believe in themselves.

    Awesome! Simply awesome buddy! - jimmy

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    1. Jimmy,
      Thank you for your comment! I can tell from what you wrote that you are a pretty positive person too. Also, thank you for the nice things you said about my dad - he is the best dad in the world! I hope to meet you some day.
      Paul

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  13. Dear Paul,
    Thank you for sharing your story. I really enjoyed reading it and learned so much. You are a true inspiration and one of the bravest kids I know. I believe your story, strength, and courage will inspire others as well.
    ~Rande

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  14. Dear, Paul -
    Thank you for sharing your story! Your dad tells me about you all the time; he's very proud of you!
    Keep writing!
    Mark

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  15. Paul,
    WOWZERS! First let me say- your story is amazing....you taught me things about your "curved" journey I've never even heard of! Second....as a K-12 Principal all the way down here in Arkansas I have to say I am unbelievably impressed with your writing style....what great use of figurative language! My daughter Carter is your age and loves writing, so I am excited to share this post with her! (I bet you have had some great teachers!) Thirdly, I clearly felt the love there is in your family in your post. I'm lucky enough to know your dad and how amazing he is as an educator. I am not at all surprised his son (and family) would be equally amazing! Keep up your CURVY & Amazing journey Paul....and keep sharing your "genius" with all of us.

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  16. Dear Paul,
    Simply said....you are a hero! We are all so proud of your courage. You are an inspiration to all.
    Tali Kupferman

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  17. Dear Paul,
    Your strength, wisdom and courage is an inspiration to me. Sharing your story will touch so many. You are the best!
    Kim

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  18. Hey Paul,
    You have such wisdom. The journey you are on builds strength and character. Your story resonated deeply with me. What an amazing young man you are.
    Alexandra

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  19. Dear Paul,
    Courageous.....Strong.....Awesome......Unstoppable. These are the words I thought of as I read your blog post. You rock (BIG TIME)!!! Looking forward to reading another entry in the future. Until then, "may the force be with you." Dad says your a big Star Wars fan....me too!
    Joe

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  20. Paul,
    Thanks for sharing such a personal story with us. You are a brave little man! All of us at Cantiague are so proud of you. Your strength is inspiring! I am looking forward to reading your next blog post.
    From,
    Donna

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  21. Paul, you inspire us all with your good humor and smile, during all of your hardships! I hear you are very smart too (which I assume you get from your mother). Continue to be strong and stay positive my friend and visit us at Cantiague often. I pray for the day that you have no more surgeries!!

    Joe Prinzevalli

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  22. Paul,
    I loved reading this blog post! You are an inspiration to so many of us. By the way, I LOVE your title. It really got my attention and made me so curious to read your post.
    Sincerely,
    Janine

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  23. Hey Paulie,
    Wow, you are something else!!! After the weekend we spent together last November, I thought all you knew about was CartoonNetwork!!! Clearly, you were holding back on me!! You are an amazing kid and I'm so glad I can call you a friend!! Now start working on that shot to cure scoliosis because I too have scoliosis (not the congenital type). I wasn't brave enough to have surgery, but I think I could do a shot at this point!! LOL!

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  24. Dear Paul,
    You are an inspiration! Your essay was so well written and an absolute pleasure to read! I am very moved by your curved journey! You are an incredibly strong young man! I love the "No Back Surgery" injection idea! Brilliant!
    Sincerely,
    Lisa

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  25. Paul,
    Thank you for sharing such a beautiful essay. You are so brave and strong! I really like your idea of a "no back surgery" injection! I think you can do it!
    Sincerely,
    Marissa

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