Since this month is Cerebral Palsy Awareness Month, I’ve been thinking a lot about what having this condition means to me.
I was born two and a half months premature, and due to loss of oxygen during my mother’s contractions, CP made its presence known. The doctors didn’t hold out much hope of me surviving a premature birth, and when my father asked if he could go back and say goodbye to me, the doctor felt it wouldn’t be a good idea and told him to go home and wait for the call that I had died.
Over time, my twin sister was thriving, but I wasn’t. Mom talked with the pediatrician who would tell her repeatedly that there was nothing to worry about, that I was behind in my development due to the fact that I was premature, a twin and a boy.
Mom knew there was more to it than what the doctor told her. When she would sit me on the couch, she put pillows around me to keep me steady, but when she moved them I toppled over.
Tired of getting the same excuses, my parents were finally put in contact with a doctor who had an answer that made sense.
In 1981, my parents took me to the office of Dr. David Santrock. He took one look at me and knew right away what was going on with me.
He told them that I had Cerebral Palsy. My parents finally had an answer and were relieved that the guessing game of “What’s wrong with Ryan?” was over.
My early school years were spent at a “special” school. I remember one teacher asking me if I ever wished for something. I told her that my only wish was to go to the same school (and the same class) as my twin sister.
Part of that wish came true in the fall of 1988. My sister was waiting outside her school as I was getting off my bus. She said that her teacher wanted to say “Hi” to me, so we went and spoke to her teacher, and as we left the classroom, my sister said we were going to go to the principal’s office to tell her that I wanted to transfer to the school. The principal told my dad that the only way my transfer would be possible was by having a student switch to the other fourth grade class. She said that a student had already volunteered to switch in order for me to transfer to the school. That student was my sister.
During my elementary and middle school years, I was offered physical and occupational therapy at school. I loved being in class and then, all at once, seeing one of the therapists walk in the classroom knowing they were coming for me. Sometimes, they both came on the same day!
Now comes the dreaded, WHY ME? portion of my post.
I was 8 the first time I asked God, “Why me?” The following year, I was alone in my bedroom looking for something in my closet. I don’t know what brought it on, but all of a sudden, I blurted out, “God, why did you do this to me?”
Instantly, I felt horrible for having asked Him that question. I remembered my mother telling us that we were never supposed to question God. Ashamed, I told myself how lucky I was to be alive and that I would never again ask, “Why me?”
I’ve often wondered about the toll my having CP had on my siblings. All three have been there to help me whenever I’ve needed it, whether it be in school, after I had surgery, or fixing me something to eat. So I can assume there wasn’t any resentment about taking up mom and dad’s time. (But then again, we all know what happens when you assume….lol..)
My CP hasn’t been a picnic for my parents over the years. My mother felt that it was her fault, since she smoked during her pregnancy. I can’t stand to think of her blaming herself for something that was God’s plan for me.
They both had to put up with those close to them basically telling them they had no business trying to raise me. When I was little, they were told that if I were with another family, I would be walking in no time. Then, in 2002, another person said that if they had gotten me to the “right doctors” I would have walked. After this person left our house, my parents asked me if I felt that they had done everything they could to get me to the right doctors, and to get the best treatment. Without pausing, I said, “Yes, you guys did everything right for me.”
I can’t understand why people would make my parents question their parenting of me. I guess it’s easy to do it when you’re on the outside looking in.
Now comes my Cerebral Palsy acceptance speech:
I want to thank God for blessing me with Cerebral Palsy, TV producer Norman Lear for putting actress Geri Jewell on The Facts of Life. Watching Geri tell the girls on the show that she had CP, in my head, I said, “Oh my gosh! She’s just like me.” Geri Jewell, thank you for being my first CP role model, and for showing a little boy that he wasn’t alone. John W. Quinn, thank you for serving our country for 20 years, all the while keeping your condition a secret so that you could live out your dream. To all the people I’ve been in contact with on Facebook and the #CPChatNow Twitter Chat, thank each and everyone of you for sharing your stories and your eagerness to raise awareness for CP.
To my brother: I thank you for being the best big brother ever! I wish that I had been able to go outside and play various sports with you, but then, we found other ways to bond.
To my sisters: Thank you for being “little mothers” to me growing up. You tied my shoes for me till I was 10, and you made sure I was taken care of getting to classes safely in middle school and high school. The three of you also made sure to take care of people picking on me, although the picking bothered you all more than it did me.
Mom: Thank you for giving me life and for being my voice before we knew CP was the answer. Thank you for loving me! I’m sorry about the scar….lol.
Dad: You are still my hero! You took me to all my doctors appointments, surgeries and baseball games. You are the best!