She was born exactly two years before 9/11 to the day. I remember the day well. It was 10 days after her due date. My doctor decided to induce labor, which hurt so much more than my first experience. After what seemed like countless hours of pain, Jade was born and began to cry...
I immediately thought something was wrong.
Her cry sounded too low to me. I have many younger siblings and cousins that I babysat on a regular basis as newborns - none of their cries ever sounded like hers. The doctor placed her on me and I noticed something was off about her ears. There was a skin tag. And after closer inspection, I noticed her ear was slightly deformed.
I asked the doctor what was wrong and he assured me that there was nothing to worry about. It didn't ease my mind much. The unease never dissipated. In fact, it grew. I began to notice other things. My baby whispering talents were not working with her. She cried every time I touched her or held her. The only person she would let touch her was her father because he would give her zerberts all the time. This would stimulate her senses - to this day she loves her zerberts!
I asked everyone I came into contact with if they noticed that there was something wrong with my daughter - my family, friends, doctors, strangers. I was starting to get desperate. I knew something was not right.
At six weeks old, I noticed something new. One side of her face stopped moving. I panicked. I pleaded with everyone to take notice. Nobody seemed to see what I saw. I begged my mom to take a closer look and began to cry. That is when she said for me to go to the hospital and not leave until I was satisfied with what they had to say. She told me:
"A mother knows best..."
I brought her in and soon found out that the paralysis of her face was due to an inner ear infection. The doctor gave me a prescription and tried sending us on our way. I would not budge. I told him that there was something else up with her. He assured me there wasn't. We danced back and forth this way for several minutes and then he saw a respected neurologist pass by the door on his way to lunch. He asked the other doctor in to reexamine Jade and to console me that everything was alright. The neurologist took one look at Jade and said she was not going anywhere.
He asked me to step out of the room and began to list tests that he wanted Jade to go through. Mind you this would be terrifying for any mother. However, I was only 21 and was alone with my three year old and Jade. Their father was away on a business trip. When I heard the words cardio-something-or-other, I freaked! I didn't know if my baby was going to live or die!
They called me back into the room and the original doctor began to scold me for not bringing her in sooner. I got mad and told them that I have been saying something was up since she was born. The second doctor dismissed the whole thing and began to tell me of the list he wanted her to go through. Long story short, we were in the hospital for two weeks.
At the time Jade was diagnosed with Goldenhar Syndrome, which effected a bunch of things in her body. She is profoundly deaf in both ears, hard-of-seeing, one of the "rivers" in her brain are smaller on one side than the other, one of her kidneys are smaller and has a bump on it. She has 11 ribs instead of 12 and is hyper double jointed (but I am double jointed as well, so that may not count).
As for the severe classic autism, that diagnosis came years later. And seeing how long this post already is, I will get into how we discovered the autism another day.
To be continued...
