One of the most defining moments in my life happened fourteen months before I was born. My older sister JoJo was born with a piece of Chromosome 10 missing. This condition is so rare that it doesn’t even have a name. Our family faces a host of challenges due to her condition as she is developmentally a toddler, deaf/mute, feeds mostly through a feeding tube in her stomach, has one kidney, small feet, low muscle tone and is fully dependent for just about everything. She also has the memory of an elephant and the agility of a contortion artist. My parents like to say she is a “two-year old with 19 years of knowledge and experience.”
Understandably, my parents are often mentally and physically exhausted. JoJo won’t stay asleep or in her room at night unless someone is by her side to put on a video to soothe her back to sleep, change her diaper or cover her with a blanket. Sometimes on the weekend I offer to replace my parents so they can get some needed rest. There are times when this goes smoothly and others when it can go like a movie storyline somewhere on the spectrum between ‘Daddy Day Care’ and ‘Child’s Play: Chucky.’
One Saturday night it was my turn to accompany JoJo through the night. Right when I was falling asleep, I realized that JoJo woke up. I said to myself You got this Monica, you just need to put her video on and she will go back to sleep. I finally realized what she was trying to communicate. She wanted her favorite video Blue’s Clues. The video was nowhere to be found. I searched the room trying to find the DVD. I looked under the bed, in the closet, in between her toys, under the covers and in her nightstand to no avail. She got angry. She would not stop pulling my hair and scratching me. Even though I tried to communicate to her that the video was gone, she would not let me be. I tried to lie down. She pushed me off the bed.
I wanted to fight back though I knew she didn’t mean any harm. The pulling and the tugging was her way of communicating. Despite the fact that she is older, I have assumed the role of the oldest sister and being the more mature person has always been part of it. I didn’t want her tantrum to wake up my parents. I somehow found the strength to walk back and forth, play and dance until 4 a.m. to distract her. The plan worked for a while: Joanne was giggling, smiling and had stopped attacking me.
However, she still insisted on watching that missing video and we were back to square one. At this point my body was telling me that enough was enough. I wrapped myself tightly in a blanket, positioned myself in a corner of the bed with a small hole so I could breathe. Even though JoJo attempted to pull me, I remained as steady as a rock. Next thing I know my dad was standing there ready to relieve me at 6 a.m. JoJo was sleeping like an angel next to me.
As I left the room walking like a zombie, I got a call from my best friend. She was crying over boyfriend issues and I gave all the advice I could so as to support her. When the call ended, I lay in my bed thinking about the night, which seemed like a blur to me. I cannot deny that it was rough, but being with Joanne gives me humility, patience, and perspective on what’s most important: giving to others what they need the most I possibly can. Of course, self care is important too- I slept like a rock until lunch time.