Mama Bear: Kind, comforting and fierce!

For many, many years, my mom has driven me countless hours across vast landscapes of this country to shuttle me to various medical centers to receive medical care. My mom would usually drop me off at the door, and then she would leave. Until a couple years ago, she was still working. So, she would find a business with free wifi and work while I was at appointments.

When I received my trach in May 2017, I had a new obstacle. Not only did I have to propel my wheelchair, I also now had a 12 pound ventilator and a five pound heater/humidifier which I had to gingerly balance on my lap. Self-propelling my wheelchair was nearly impossible. I could not hold my equipment and also use my hands to move the wheels on my wheelchair.

At my very first appointment after my tracheostomy surgery, my mom accompanied me to the appointment. I was a bit frustrated because now I could now longer filter what I relayed to my mom about my appointments. I was very protective of my mom and never wanted her to know all the details about my health. But now, she was going to be privy to all my health information. It took some time to get used to this. I could no longer shield my mom from bad doctor's appointments. And she very quickly discovered how difficult it often was for me to receive good medical care.

As time has progressed, she has gotten used to medical lingo and the process of being in the hospital. She is not afraid to voice her concerns. Sometimes, though, I feel bad for my health care provider.

During one hospitalization, for many days straight, I had been continually kept awake all night. I had just drifted off to sleep when the physician decided to round. As soon as the doctor walked into my room, my mom pounced on the physician. "She just fell asleep! Do not wake her up! She needs to sleep!" My mom chased the doctor out of my room. When my mom returned, I was chuckling. "Mom, you do know that was the doctor." My mom responds, "Oh, really? She can come back later. You need to sleep."

Other times, my mom has been my fierce advocate. When a pulmonologist suggested I did not need a ventilator to breathe, my mom tore apart the physician. "My daughter has respiratory failure. She can't breathe without the ventilator. Of course she needs a vent to breathe!" And my mom continued on a rant for a few minutes. The doctor quickly ended the visit and left. The subject of taking me off my ventilator never came up for the rest of that hospitalization.

As we attend more and more appointments together, my mom often gets frustrated. When I sense an appointment is not going in the direction we had hoped, I will say very little to the medical professional. After the appointment, my mom will often scold me for not speaking up. I respond, "The doctor was set in her ways. I could sense it from the moment she walked in. She had a certain plan which was different from our plan. There was no use fighting. There was no use getting upset and possibly damaging this relationship with the physician. It is best if we just walk away and try again another day." My mom is not usually happy with this response, but in the end, at the next appointment things do go differently, and I get the treatment we had hoped for.

This weekend we celebrate Mother's Day, and I just want to say, "Thanks!" to my mom. It is wonderful to have such a loving, kind, caring and compassionate mom who is not afraid to show her teeth. This day and every day it is a blessing to be her daughter. Love you!