I was due on November 23, 2000 but I was pretty comfortable growing inside of my mom’s belly so I continued to make my mom request cheese enchiladas from Molina’s, Ultimate Cheeseburgers from Jack in the Box and Cherry Icees from any place that had them. On November 28, labor was induced and 27 hours later my mom was having a C-section. My mom was so relieved when she heard me cry for the first time.
My mom wasn’t doing very well after my birth. Her blood pressure was dangerously elevated and her potassium was dangerously low. She says she felt sick, exhausted, still looked pregnant and she could barely move. On the other hand, I was doing great. She says I was pretty and pink and she loved listening to me breathe and sigh through my cleft lip. Each time the nurse brought me to her, I would have a new crocheted bonnet made by the hospital volunteers. This made her happy.
At age 12 weeks, I had my right unilateral cleft lip repaired.
At age 6 months, my parents found out I was deaf.
At age 10 and 13 months, my cleft palate was repaired.
At age 13 months and three pediatricians later, I finally got referred to genetics.
At age 18 months, during a cleft clinic visit, my parents were told something was neurologically wrong with me and they were referred to neurology.
At age 23 months, my parents found out I had delayed myelination and a chromosome 18q deletion.
At age, 16 I had my first grand mal seizure.
The one characteristic of such a deletion that stood out the most (to my mom) was the possibility of mental retardation. She says her heart broke.
My parents grieved, blamed themselves for my challenges, listened to a family therapist tell them that they should think about putting me away, but they didn’t listen to her and they never stopped trying to figure out how they could help me.
Well, I graduated from high school last school year and I will be 20 years old this year. My mom says that a chromosome 18q deletion, delayed myelination, autism, ADHD, Deaf-blindness, epilepsy and severe intellectual and developmental disabilities do not stop me from being all of the wonderful things I have become. She says I am a trailblazer in our community, and her my eyes, I am very brave, strong, sweet, funny, smart and just plain beautiful. ♥️