Sister Mother

Chapter 2

Addie

Dad always said that my brain was too big for my head, so I better put it to some good use. He said that they day before I announced that I was going to be a doctor and cure my own disorder. Ian McKenna was a property lawyer who came home every day in nice suits, smelling like expensive cologne and cheap coffee. Whenever I visited him at work, he'd point me out to his partners and clients and say "this is Addie, my oldest. She's got a big brain and little patience. Don't cross her."

Mom, Eileen McKenna, was his complete opposite. A painter who always had paint on her elbows. As a kid, it was the coolest thing to get smeared every time I hugged her. As an adult with one foot out the door, I avoided hugs so I wouldn't become her canvas, but she'd chase me around the house, shrieking with laughter whenever she quickly caught up to me. She'd shower my face with kisses and say "Don't be in so much of a hurry to grow up and get out of here. You'll still have to come home for Sunday dinner when you're a big hot shot doctor."

One night, they went out to dinner. My phone woke me with my uncle saying "parents," "car accident," and "I'll be at your house soon." At the hospital, Mom was in surgery, and Dad was in CT. The next morning, the drunk teenager who hit them was arrested. A traffic cam showed Dad unbuckling to pick up his watch when the crash happened, propelling him through the windshield. Mom's head hit the steering wheel, and the airbags failed due to a sensor glitch.

Several surgeries, medications and consults with four different neurosurgeons, Mom and Dad were placed on ventilators. Two weeks later, Uncle Jason and I argued about life support. He believed in miracles while I only believed in science, which had failed us. I dragged Uncle Jason to Mom and Dad's lawyer's office to take away his medical proxy powers. Already burdened with more heartbreak than I'd ever felt before, I went numb as I stared at the signed papers, proving that Jason was their medical power of attorney. I went number also the lawyer responded to Mom and Dad's "dire conditions" by showing us their wills.

If they died, I'd get everything, including guardianship of my siblings, Gabe and Beatrice.

That night, I said goodbye to my Future Doctor plans, and hello to motherhood. The college graduate became the medical school dropout who worked two minimum wage jobs that barely kept us afloat.

As if that wasn't enough, my hips needed to be reconstructed. I had been scheduled for a bilateral reconstruction only a few weeks after the accident, but cancelled it. Dad's insurance company sent a letter explaining that since he hadn't worked in eight months, we no longer had access to his benefits.

My disability was called Morquio (pronounced "More-Key-Oh") A Syndrome. My body lacked an enzyme that broke down cellular waste. Since I couldn't break down the waste, it built up in every cell of my body, mostly the cartilage and ligament cells. Difficulty walking because of our abnormally shaped bones, less energy and short stature were just a few of our symptoms. Gabe and I had been taking a weekly enzyme replacement therapy for the last several years. It was the only treatment for our condition, but it didn't get to the bone and it only slowed the progression of our disease.

I was in the process of applying for a medical aid grant from the National Organization of Rare Disorders, to pay for the infusions. It had been three weeks since my brother and I received our last infusion. Vimizim was our weekly source of energy, and without it, we felt weaker and more tired each day.

To top it all off, Gabe and I shared a car. When I was seventeen, my parents bought me a car with a raised seat, pedal extensions and custom hand controls. We had special state approval to remove the airbags, which would go off right in our faces even with the raised seat. Gabe and I shared the car. I relied on Lyft drivers when he was off at school.