The Paradox: Styling and Racial Profiling
Ahh, the post I've been dreading the most. You never want to believe that the same providers who want to help you, also despise you. It's been happening from the moment AJ was in the NICU. When Julius scrolled me down there to see my baby and everyone was shocked to see a black couple... for such a bright light baby. The curiosity then began. The stares, the forced smiles, and the need to double check our wristbands when entering the unit. The most wounding part was the constant need to feel like I had to vocalize my normal upbringing, educational background, and experiences to gain acceptance.
I never even told my husband the whole truth about this, but at the University of Chicago the nurses were given strict instruction to take blood sample from AJ 3x a day after his mandibular surgery. They did this for 5 days and each day his feet looked worse than the day before. Pale, bloody, and bruised. Completely lifeless. I complained and told them this method needed to stop. If all his labs were normal, let's try and reduce the number of blood draws a day. They refused.
For those of you wondering, after a surgery, I am aware that certain procedures have to be followed for a patient's recovery. My only concerns were that the nurses weren't taking the blood in a sterile manor and that AJ had become visibly pale and lethargic since they began those orders.
Well on the 6th day, that same Doctor who was ordering the bloodwork, called me and said AJ needed to have a blood transfusion. Hilarious! I told him, there was no way I was agreeing to that unless two things were to happen. One, after the transplant is complete, AJ gets a break. Two, if you can't reduce the amount of blood draws, put a PICC line in AJ, to at least reduce needle sticks to the foot. He refused, so I refused. Well, they needed parent approval in order to proceed, so he calls my husband. He explains the situation and Julius grants his approval. Only, that same Doctor calls me back and has the audacity to say he needs tangible proof that proves Julius and I are legally married. That a consent over the phone makes him uncomfortable and he cannot proceed with the transfusion until he sees paperwork.
Now, I could be reaching to assume that the situation was outright stereotyping. However, there are so many scenarios where I have had to prove I am diligent, capable, and just as knowledgeable to care for my own son, as they assume "qualified" they are. In previous posts, I've talked about being on a waitlist for the last 5 months at DSCC for at home nursing, only to find out that there is no waitlist! That actually, the town we reside in has a high demand of nurses looking for work. AJ's case manager also led me to believe, I had to make the phone calls to facilities on her behalf and scope out potential qualified staff. When in actuality, that is her job precisely. That's actually her only job.
I feel bad for AJ also. He doesn't know what I've seen yet, but people are disturbed by his appearance and presence. They stare and aww, then when they ask his age and realize that it doesn't fit his physique, they squint. Body language powerfully conveys nonverbal communication very clearly. It's not just the people we pass by on an outing that make this a fact. It's the skilled professionals who specialize in the overall well-being and quality of life in human beings. Dr. Fitzgerald tried oh so hard to seem as if it was against his medical advice to give his opinion but made it very apparent if he had a child such as AJ, he would place them on DNR. "What is life, if you're not living up to the means of "life"." What he left out, was his definition of life.
Then there's his pediatrician. Every time I take AJ for a visit, they require me to complete a postpartum questionnaire. Why me? I am not under the care of Pediatric Health Associates. No one knows my medical history nor are they certified to treat me for anything, if even deemed necessary. I've asked so many times why I have to keep filling it out if my answers never change, but I'm met with a distorted response full of undertone and passive aggressive body language.
Well, I am done seeking validation and acceptance from individuals who perceive me as a fraud. People fail to realize; I didn't ask for any of this. It wasn't my dream to give up my entire career to care for my child who has a disability. I shouldn't have to defend myself because my skin color makes people uncomfortable. The preconceived notions about my intentions and circumstances, no longer warrant an explanation from me. It took me a long time to accept and to commemorate myself, because I was so busy explaining who I was for the appreciation and respect of others. I no longer choose to carry someone else's burden, that is full of exhaustion and titles that justify self-worth. I am AJ's mother. I am not perfect, but I do my best and there is nothing else worth stating.
This makes me so angry!