Don’t Mess with the Mama Bear

         A few weeks ago, I participated in the Immune Deficiency Foundation’s Advocacy Day.  The funny thing is when you have a chronic illness, your entire life is about advocacy— Advocating for yourself in your social circle for people to see you as an equal, advocating for yourself in your family so they will see you as an independent person and not fragile, and advocating for yourself with your specialists to receive the best possible care.

         The thing is no one with an illness automatically knows how to advocate for themselves, they have to learn it.  How do they learn it?  Three words— Mom and Dad.  One of my favorite stories of my mother advocating for me was when I was at the ripe old age of three.

         Even at three years old I battled chronic and severe ear and sinus infections.  My otolaryngologist was a brilliant, world renowned doctor who even created a new way to preform sinus surgeries.  The only problem was he didn’t have the best bedside manner, which is putting it very nicely.

         On this particular day my ear was in terrible shape.  My doctor decided the infection inside needed to come out. My mom, sister, family friend, and I were taken to a procedure room. Without any warning, my specialist and a nurse came into the room with no word to my mother or me.  He came towards me with a long instrument that had sharp point at the end.

         My mother wasn’t happy with the situation, but she stayed calm to keep me from falling apart.  The doctor and nurse laid me down on the table and the nurse straddled me so I wouldn’t move and damage my ear drum while the sharp instrument was in my ear.

         From the time my specialist and nurse came into the room, until the time the instrument was in my ear, I didn’t scream, cry, nor throw a fit.  I just whimpered and trembled with fear over what I was being put through.  After the procedure was over, my doctor pointed his finger in my face, “You have whined and cried since the moment you got here,” he looked at the nurse, “Get her out of here.”

         This was the breaking point for my mother.  She immediately turned from a calm golden retriever trying to keep the peace, to a roaring mama bear ready to take out the predator who would dare hurt her cub.

         My mom turned to our family friend, “No, you will take the girls out, I need to speak with the doctor.”  There was no denying my mother’s message or meaning.

“You’re not happy with me, are you?”

“No, I’m most certainly not happy with you.  You bring us into this procedure room, you come at Whitney with a long sharp instrument, not telling her what you’re going to do, this nurse straddles Whitney, and you don’t even consult me about this procedure you preformed.  Whitney didn’t throw a fit, she didn’t scream or cry.  She just whimpered and trembled because she was so scared. Then you have the nerve to talk to her the way you just did?!  That is not acceptable.”

“Well, I’m sorry,” my doctor said thinking everything was settled.

“I’m not the person you need to tell, you’ll be telling Whitney that.”

And as you know, no one argues with a mother who is advocating for her child.  Even though I was young, it taught me how I need to advocate for myself in every area of my life as an adult who has a Primary Immune Deficiency.  I don’t deserve to be disrespected or belittled by anyone.  My parents showed me every time they went to bat for me that I have purpose, I have worth, and I have something to offer this world.

So, parents who have a child with a chronic illness, I can’t stress this enough: advocate for your child.  Advocating can be difficult, it can be awkward, and it can be confrontational, but I can promise you this— if you advocate for them, they’ll learn how to advocate for themselves as an adult and they’ll know they have purpose, worth, and something to offer this world.