The Beginning of My Journey With Cerebral Palsy

I was born on Wednesday, December 20, 1989. I usually tell friends three things about my birthday. I’m happy I caught the last breath of 80’s fashion, I was just too excited to wait to meet everyone, and Christmas is way better than Valentine’s Day (This opinion is not influenced by my current single status.) The truth is much more involved than my smart-aleck quips convey.

On December 20, 1989, my mom was 33 weeks pregnant. She had been put on bed rest for a few weeks, no easy feat for a woman with an active 5-year-old and 7-year-old boy at home. She went into full blown preterm labor three days before I made my debut. The doctor attempted to stop contractions to allow my lungs and other vital organs to develop. However, the longer you stay in the hospital, the higher chance you have of developing an infection. My mom developed an infection which passed to me. Cue my curtain call.

My mom said that despite the early start, her labor was still long. Maybe this explains my obsession with being early for things… At some point, the doctor told my mom to change positions. She never does anything without purpose and demanded to know why. Apparently, my heart rate had dipped. The doctor was still cool with trying for a natural delivery, but my mom opted to sacrifice her smooth abdomen to ensure I was OK.

I made my entrance into the world at 11:24 p.m. My umbilical cord had wormed its way under my arm and around my neck, effectively cutting off my oxygen during contractions. I didn’t cry and my beginning APGAR score was poor. Thankfully, I managed to pinken up as much as a baby with jaundice could, and got within the APGAR safe zone at the five-minute mark. My mom did not get to hold me, but she told me that when she could, I fit in the crook of her forearm like a tiny football.

At the time of my birth, I was a whopping 4 pounds 14 ounces. I had an infection and severe jaundice. I needed a blood transfusion to combat these issues. My dad and I are not compatible blood types and my mom was too ill to donate. My parents had to put their faith in a nurse in the NICU. During the late 80’s, the AIDS crisis, my parents let a nurse give me her blood. My mom had me tested for AIDS later just in case. I was a cabbage patch doll dream come true, so I can’t blame her.

I came home three weeks later. I was hooked up to a heart monitor 24/7, and my parents were versed in infant CPR (they weren’t dealing with much anyway). One week after going home, my mom had to use her CPR skills and rush me to the hospital. She obviously knew what she was doing because I’m still here!

My development was an interesting thing to witness per my mom. Apparently, I would learn to do things, forget them, and do them again at the same level or better a few months later. I chalk it up to my brain rewiring itself around damage. Mom could tell before anyone that something was off with how I was developing. She tried to reason with my physical therapist, but he refused to say I was anything other than hypertonic. My diagnosis came from a neurologist when I was about 18 months old. According to a checklist, I had 18 out of 20 markers for cerebral palsy (I even got 90 percent grades as a baby!) This score combined with observations finally led to the answer my mom had been searching for.

Yes, I have cerebral palsy of the spastic diplegia variety. However, I don’t think having cerebral palsy is different from having brown hair or blue eyes. Sure, I make accommodations for myself every day, but I don’t see myself as less than able-bodied people. People are disabled by the environment, not because of the way they are born. I am different, not less.

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Thinkstock photo by Ash Studios.