CPN | Diplomas and Diseases

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Diplomas and Diseases


It’s a normal weekday morning and I’m in my white Toyota Sienna minivan at a stoplight en route to my daughter Chloe’s school. Our route is a short distance from our home, one right turn and two left turns to get to the parking lot of her middle school. These drives used to kick off the hopeful prospect of a few hours of time to myself once Chloe was dropped off. It seems each week these periods of respite get fewer and farther between. Lately, due to her illness she spends much of her time at home rather than a classroom.

Today, with the assistance of my minivan’s visor mirror, Chloe uses the drive time to finish her morning beauty regimen. My mind is already racing through a laundry list of to-dos. I have phone calls to make, emails to respond to regarding Chloe’s care, and need to squeeze in a trip to the pharmacy. As it usually does at this stoplight, my brain begins to feel like a tornado. This single pause allows a swarm of thoughts to take over my mind before I can even pull into the parking lot.

“How long will she make it at school today?”

“Will the nurse call me before I get to all of these tasks?”

“I need to walk these newly filled medications into the clinic when I get there.”

“What evenings should I sign her up for homebound services this week since she only got to school one day so far?”

I stare blankly out of the window with a glazed expression. I am so deeply in thought that the driver beside me might have believed I was hypnotized into a trance. After applying one more layer of a viral mascara and slamming shut the visor, Chloe’s voice abruptly cuts my thoughts to silence, stating “I think I want to go to Yale”.

While most parents might have a flutter of excitement when their child announces their Ivy League aspirations, I felt a pit in my stomach. She waited patiently for my response and my words stumbled. I tried my best to sound encouraging and saying, “Sounds like you are ready to work towards a big goal, Ms. Rory Gilmore.” (an ode to our mutual favorite show) 

How do I realistically support a dream that seems unachievable? How do I explain that attending only 1-3 half days of public school each week will not prepare her for the next grade level? How do I tell her that her disease is unpredictable and any day a crisis could be around the corner bringing about extremely limited options?  How, as a mother, do I dare to steal away her dreams? Is a reality check important right now? Why is everything so hard for her?

I drive the rest of the way to school making the one right turn and two left turns on what feels like “brain cruise control”. I take Chloe into the building, and we walk together to the clinic. I drop her medications off with the nurse while Chloe signs into the office. Afterwards, I wave goodbye through the window of the clinic. She returns my wave and gifts me with her effervescent smile as she makes her way to class.

I walk to my car and sob.

The unknown of Chloe’s future is deafening and devastating. Even with an extremely supportive school, a detailed 504 plan, and homebound services, Chloe’s lack of instruction due to her disease burden has proved too heavy. Juggling chronic pain, handfuls of medications, dozens of monthly appointments, and two forms of feeding modalities, school sometimes must fall to the wayside. The weight of being a licensed teacher and watching her education slip away is enough to make me drown in guilt. I want school so badly for her. I wish her disease would cooperate with our wants.

When I share these feelings of guilt and shame with her palliative team they respond encouragingly. “Chloe would never be where she is today without your care”. They gently remind me that our goal just last year was to not be in the hospital and now she’s attending some school. Give it time, they tell me. But my teacher training reminds me that the school year keeps ticking forward, outpacing Chloe.

While this journey may not be linear or predictable, I need to celebrate the wins even when the what-ifs are dark and terrifying. By supporting Chloe’s big dreams, I am allowing her to see more for herself. My support enables her to look in the mirror and see more than scars and medical accessories. While she dreams of Yale, Chloe sees light and envisions her future. She can see herself as a doctor, a teacher, or even the next Elle Woods. The truth is while tomorrow for Chloe could mean a medical disaster, it could also mean a step forward toward a diploma.

After all, Yale’s motto proudly inscribed in its crest reads, Lux et Veritas.

Light and truth.

And some days on this medical odyssey the light feels much warmer than the truth.