Fitting into the working world as a mom of a chronically ill kid can be challenging. I have found that for the most part, part-time work has been the best fit. It’s flexible, it’s convenient, and it allows me to still take Wendy to doctor’s appointments, or call insurance companies, or figure out prescriptions and durable medical devices, or whatever. Being the mom of a chronically ill kid can be a lot of work.
But I still want to be a professional, and I have trained to be a historian, or a teacher of history. For the past ten years I have worked part time as a history adjunct in both Vermont and Massachusetts. Recently, the college where I worked shuttered its doors. It was devastating to all involved: students, professors, and administrators. We had all been cut adrift with not so much warning; we were told in April that the college would close in May.
So I needed to take stock of what I had done for the past ten years. I had cared for my very ill child, I had advocated for her in a hospital setting. I had monitored and adjusted her 24 different medications, her three different insurances, and her doctors in three different states. I had spoken at Grand Rounds, had spoken to medical students and new residents. I had helped to revise documents released to the public about medical conditions. I had created a welcome video for children when they arrived in the Emergency Department, sick and scared. I had lobbied politicians and representatives for medical insurance rights.
Here’s the thing: no one cared. No one in the medical world would give me a job based on these qualifications. They thanked me for my service and after the initial interview I never heard from them again.
I also applied to many different part-time teaching jobs. I had lots of experience, I’ve taught lots of different subjects, from world history to American history, to Native American, African American and women in American history. I’ve taught courses on totalitarianism and brought students to concentration camps. But when I was asked why I worked part-time, my response of taking care of my daughter while working was seen as a liability. They thanked me for my services and after the initial interview I never heard from them again.
Let’s be clear: I’ve worked hard for the last ten years. I’ve had to do things to and with my child that I would not wish on my worst enemies. I have been brought to the edge of sanity with grief and worry and sleep deprivation. But as I suspected long ago, the rest of the world does not value that kind of commitment, or organization, or dedication to taking care of my child. Most people see me as a liability, though I’ve never missed work, I’ve always managed.
I’m an excellent teacher. I’m an excellent caregiver. I can be both. I have been both.
This time has really damaged my self-esteem, because even though being a parent of a chronically ill kid is hard, to be honest, I really thought I had my shit together. The college closing was like a slap in the face, the world I had created was shattered like a false mirror, revealing what the rest of the world really knew, really thought of parents of chronically ill kids.
I wondered if keeping this blog, after my experiences this spring and summer, was just an exercise in vanity. Maybe, I thought, I should stop writing. But I realized other people, other parents, must feel the way that I do, working the hardest job in the world, and feeling undervalued by society. So I’ll keep writing, at least for now, or until no one reads the blog posts anymore.
As a postscript, I have found a job, and I really love it. The problem is that it’s full time, and I’ve been struggling mightily with the other aspects of care. My chronically ill daughter and her doctors’ appointments and insurances. My other daughter who is well but seeing less of her mom. My husband who is valiantly picking up my slack in those departments and whom I couldn’t do any of this without. I’m sure that these will be other blog posts in the future.
Moms and Dads of chronically ill kids, know that I value you and I know how hard you are working. I know from experience. The world may not value the struggle but other parents recognize the hard work it takes to resemble normal.
Keep going. Storms make trees take deeper roots.