My name is Christina and I am a 17yo with Spastic Diaplegia CP. I have spent several days at your site reading Willie's story and the stories of all the other children that are featured. I can't possibly begin to explain to you the  emotions that ran through me.

So many of the things that you spoke about in Willie's story I remember so well. I too had a rifton trike. I remember the first day I learned to crawl at age three, use a walker to walk at age 6, moved to crutches at age 8, and took my first independent steps at age 9. I also remember my first round of surgeries at age 6, my mother stood over me crying as I came out of recovery just as you describe..... Yes and perhaps the thing that I remember the most is all the HOPE. You are so full of hope and that is great.

At 17 they say I have reached my full physical potential. My hope comes in a much different form now. I am no longer trying to "walk normally" I am trying to live. Go to school dances, maybe have a boyfriend, and I hope that 1 day I will be able to have my own kids.

Please visit the President's Room On my site Capable Corners to learn more about me. Be sure to read both the new and old essay's and visit bio page 2 to see me at you son's age.
 
 

There will come a point when your children get older where all of this will hit them and they won't want to be in a chair. They will look at you then and ask you why you didn't fix them. That moment has happened to all of us and me and my mom both agree that it is the most painful moment we have ever been through. The thing is, it is at that point that your children will have to look at themselves and decide who they want to be and how much of a role their disability is going to play in their life.

When I first started looking into the SDR for myself I was about 15. I decided that I needed to improve myself. The thing is that when I went to see Dr. Park for the first time his PT took one look at me and started saying "Why wasn't this tried or this surgery done." and Dr. Park said that if I had, had the SDR when I was 5 I could've skipped all the other surgeries.  This after 2 hamstring and heelcord releases, abductor releases, muscle transfers, and bilateral ankle ostiotmies. I looked at my mother then filled with more anger then I have ever felt and I asked her "Why?" Why didn't I have an SDR and why did she put me through all of that and I was still
such a mess. The thing is that she didn't know about the SDR no doctor ever mentioned it, and we had the best docs in NY.

Here's the thing though I didn't care when I was little. I fought my mom every step of the way. Every PT and OT session I screamed and resisted. I was just like your children I wanted my life and I didn't see how it needed any improving. The thing is that it mattered then that moment in the doctor's  office when I turned to my mom and asked "Why?' and it matters now. I work my butt off in therapy now I gave up school last year to do rehab. And everyday I wake up and wish that I could grasp a cup with my left hand, or that I had the balance to walk without my crutches, or that I could cross my legs..and I am 100 times better than before my SDR.

Some days all the "ifs and would haves, and could haves, kill me. But, the truth is that I only took up this whole thing as a teenager. My mom made the decisions for surgery 1 and 2 all on her own. If it wasn't for her courage I wouldn't have been able to sit up or walk with crutches or a walker my whole childhood. The SDR might have still helped but the results wouldn't have been nearly as good and I can tell you without hesitation that I would never have forgiven her for doing nothing. It really doesn't matter too much what your children want at this point because 10 years from now they will look back and say "I was a kid what did I know."

A lot of CPers will disagree with me because their parents put them through things that didn't work and they are bitter. Or they are just adults who have gotten so used to thinking for themselves they forget what being a kid means. You don't call it rape when you force your  kid to take their antibotics and this is no different. Frankly that analogy pisses me off.

There is one thing though..no matter how hopeful you are about the outcomes of any surgery DO NOT make any promises to your children. Through all my surgeries my therapists and my doctors have told me "after you do this you will be able to walk independently or ride a bike etc..." Very few promises have been kept. I'm not saying this to discourage you as each case is different, but I will tell you that you don't want your children to feel you lied to them or they will quit and not work. Tell them that this *might* happen but that if it doesn't happen right away you will be
with them to keep trying. Don't make it sound like a miracle.

Friday is the 1 year anniversary of my Rhizotomy. The doctor promised me that within 6 months of my surgery I would be able to wear a small ankle orthotic and by the year mark I would be off braces completely. I wore the ankle orthotic for 6 weeks before they put me back in a full AFO and I get my new braces on Friday another whole AFO..I will not get out of my braces this time or any time. I hate the doctor for all his promises. So, don't make promises.

When it all comes down to it now...I have to some how find a way to make peace with what wasn't done or couldn't have been done. I have to try and accept that my ability level now is most likely the way it is going to stay. There are really no more surgeries or treatments out there for me. In the world of disabilites I, at 18, am old and passed the molding stage. That is a very hard thing to accept but, I know my mother tried and I know I tried and that helps.

You have no choice you have to do this. What do you want your children to see when they are  18??