Saturday, August 21, 2010
Finding My Voice
I was attempting to give Vada what normalcy I could by doing some evening "tummy time" with her. I had just put Vada to the floor when a new face entered our room.
This new doctor had quiet footsteps and a warm demeanor. She introduced herself, however, her name is NOT important (at least, not to me, or to this story). Honestly, she lost all importance to me with in the first five minutes of our conversation.
For now, for this story's sake, I will tell you say that she was one of the pediatric Neurologists .
At first her presence and casual conversation soothed my nerves. That quickly changed when she actually began discussing something worthwhile.Vada. She pointed at the computer screen that was illuminated by the constant EEG results.
"This is very bad, not normal." She replied as if her words wouldn't cut into my heart like a knife. She finished by saying, "This is terrible EEG reading and it keeps getting worse."
"What are you trying to tell me?" I asked, (it was becoming difficult for me to talk. It felt as the air in the room had started to deflate.) "Are you trying to tell me shes going to die? Could she die from this?" I asked.
"Oh, no, no." She answered quickly but then threw in "She'll die because her brain will be so damaged that her body wont continue to work properly."
I saw flashing stars. Seriously, I did. I think that I was close to passing out. It was like when you get hit really hard and you see those white spots. I am pretty for sure that getting hit would have felt better at that moment.
She then began to tell me how fluid could and probably would build in her lungs, how her heart could fail, and..., probably would considering her heart.
I just sat there dumbfounded.
Her words became static, background noise as I began visualizing Vada just a few days prior to all of this.
Her seizures started on Monday. That Sunday, there were no warning signs. No clues. In fact that Sunday was an memorable day.
Our pastor had just held her up in front of our congregation.She was just baptized.
Justin wore a suit! He doesn't dress up like that ever.
We had gone to one of my favorite restaurants, Ruby Tuesday's, to celebrate. We had tried every flavored lemonade that they made. It was a beautiful day. Fun, with wonderful weather.
Vada had even had her first real taste of solid food that night. Sure, it was just oatmeal... but still a milestone. A step forward. Something to add to the baby book.
I was having a hard time grasping this. I didn't understand..., What was God thinking? I was mad now. Is this what he wanted? I didn't get angry when I was pregnant and found out Vada had Down syndrome, my faith held on. I kept strong. Was God stepping it u a notch? Trying to see how hard he could push me?
No..., God knows what I can handle... right?
It took me a second to snap back, but I began hearing the doctors words again. I'm sure I only spaced off for a second or two. I know I didn't miss anything of importance because she had diarrhea of the mouth, and her words were toxic. It was almost better not to listen!
"I know Down syndrome. My friends had a son who had a very mild form of it and he died when he was twenty." I heard her say. I turned to look her in her eyes. I was lost in what she was trying to tell me. Mild? No, that' not right.
I just stared as she continued. I'm sure my mouth was wide open, but she paid no attention to what her words were doing to me. If she did, she didn't care.
Once she finished her spew of her Down syndrome "knowledge" I spoke. My heart was heavy and I could feel the heat that had settled in my neck and I could tell it was still rising. I wondered if she could tell. Was my face as red as it felt it was? If so, im sure it was an interesting shade.
"No. Your wrong." I said with as much restraint as I could. "I know of many people who have Down syndrome and who have gone to college, who are in regular education classes, who live on their own, have a job and are older than thirty. I seen a man at every softball game my daughter had this summer, who was at least thirty, who has Down syndrome!"
I went on, not letting her interrupt me. "Our parents have a neighbor who has a beautiful daughter, and she has Down syndrome. She went to college and she graduated! Plus, she is a beautiful singer!" By now I wanted to shake she shit out of this lady, but I didn't. I said what I had to say and I did it with confidence. I made sure sure that I didn't "freak out", because I am not going to be labeled as a over reacting mother. When I speak, I speak for Vada and I will be heard.
After she left Vada's nurse came in. That doctor had prescribed two more anti seizure medication to be started right away. I didn't think much about it and said "okay". As I watched the nurse give the new medications I began to tell her about the conversation that the doctor and i had just had.I was about half way into my complaint when she stopped me from talking. I had just finished telling her how the doctor actually questioned my choice for not aborted after I found out that Vada had Ds. I thought she was going to make excuses, but she didn't. She had a look of disgust in her eyes and began t tell me that this was not the first time this particular doctor had made such inappropriate comments. Other parents had similar complaints like mine.
She said I could tell her superior. I could choose for her to not treat Vada" anymore. She waited for a reply, but I didn't have one to give. I didn't know what to do. At that moment I was actually considering that doctors feelings. I didn't want to get her in to trouble. I also didn't want to hurt her feelings. What would she think if she were told that I said she couldn't treat Vada any longer.
It wasn't until later that night that I talked with a newly made friend of mine, Amy. A mother who had gone through a very similar situation with her daughter. I told her about the whole conversation with the doctor. She listened to me quietly, making little to no comments until I was finished. Once I had filled her in on everything she began to open up. Spilling out her wisdom, experiences and advice to me. By the end of our conversation we had agreed that she would come up the next morning and sit in during the doctors "rounds". We had also established that I was in control of Vada's treatments, I was the voice that the doctors had to listen to.
After hanging up the phone with Amy I went and found Vada's night nurse. I told her that the doctor who we had discussed would not be allowed to treat Vada any longer. She was not welcome to come into our room or make any more choices for treating Vada.
... and it began..., I was finding my voice. The voice I read about in all of the parenting with special needs books. The one all of the video's on Down syndrome talked about. I was my daughter's only voice and I had begun to use it.