Storms Make Trees Take Deeper Roots

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.

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Communicating During Crisis

In the beginning of Wendy’s hospitalization, Michael and I arrived at Massachusetts General Hospital at different times.  I had first flown with Wendy from our home in Vermont to Dartmouth Hitchcock hospital in New Hampshire.  Then a few hours later when it had been determined that Wendy was in kidney failure, she and I were taken by ambulance to Mass General.  Michael and my mom followed later in the car, and typically, got lost in Boston because everyone does.

After we had both arrived and had gotten settled, one of the first things we did was go down to the coffee shop in the hospital.  We knew that we were in for a long haul.  Suddenly we were two states away, our parents were arriving, and we knew that things were going to be really tough medically, emotionally, financially, all of it.  In a whirlwind of chaos, we knew that we had to set down some guidelines for communication, and stick with them.  We were both horribly scared, but we knew that we had each other, and we had to keep our lines of communication open.  We agreed to some ground rules:

Be kind with your words.  “Don’t ever say anything that you can’t take back.” You know those words, spoken in anger, using absolutes like, “You Never” or “I Always”. Those aren’t helpful. We are a team and we will act like a team.

Be honest with your emotions. Just saying your emotions out loud makes you feel better because you’ve put a name to them. “I am scared” is a powerful phrase.  Don’t expect to have the other partner know how you are feeling, you need to state it.

Say when you need a break. Sometimes we need to take a step back, get a cup of coffee, walk outside and breathe a little fresh air. We would feel overwhelmed at some point in this journey. Those few minutes where you can separate and regroup your thoughts will save you in the long run.

I honestly believe that this agreement preserved our marriage.

These ideas didn’t fall out of the sky, we had done these things, more or less, over the years.  We had learned good communication through a number of avenues.  One way was living in the Czech Republic together. After dating for about a year, and after we had both graduated from college, we had the crazy idea that we would move to Prague and teach English to Czech students.  We didn’t quite realize the situation we had put ourselves into.  We had arrived in a small town well outside of the city and were essentially the only two people who spoke English.  Unlike western cities that had dual languages for menus or bus schedules, everything was only written in Czech. This made for humorous meals at the local restaurants when all we could do was point to something on the menu and hope for the best.  The other “English”teachers in our schools were the former Russian teachers, who were told overnight that they needed to switch to teaching English or face losing their jobs.  Not only was their English not good, but they weren’t thrilled to have native speakers teaching along side them.  We were on our own.

Michael and I lived in a single converted classroom in one of the two schools in town.  It was inconvenient, especially because it also housed the early care for children, who liked to just walk in to see what we were doing.  There was no telephone, and it was only the dawn of social media.  The situation was less than ideal.

We realized quickly that if we had an argument that there was no one else to talk to in the whole town.  Necessity became the mother of good communication.

Prior to that, we also had experience with something called a “Full Value Contract” from Gettysburg College, where we both attended.  A full value contract was introduced to us through Gettysburg Recreation Activities Board, or GRAB.  The idea was that everyone had an equal say and it was up to the individual to be clear with how they were doing, as no one is a mind-reader.  Neither Michael nor I were in GRAB, but one of our best friends, Hutch Hutchinson, was one of the first student leaders, and he led trips for student groups, including groups that we were in.   Michael and Hutch hiked 500 miles of the Appalachian Trail together.  (Hutch continues this work at Boston University, where he leads the Common Ground seminar for first year students.  You can see a video of it here.)  “Full Value Contract” was a part of the vocabulary we brought with us to the Czech Republic, and it served us well.

Lastly, Michael and I knew that when we were stressed, that we used a certain “tone”.  You know that tone.  It’s 50% of communication, and when the words and the tone don’t match, it’s the tone that trumps the conversation.  Way before we got married, we agreed to state when a day was going to be stressful.  We would say, “Today is going to be tough, so I want to say I love you now, in case I forget later.”   This might include buying our first house, or going on a trip, or going into labor and having a baby.  This was an inside joke, almost a code for us that we needed to treat each other well not knowing what the day held in store for us.

We brought all of these tools with us to the hospital, and yet we still felt the need to take time away and actively state our three ground rules for communication when we got to the coffee shop.  This isn’t the recipe for every happy family in the world that is going through the trauma of a chronically or terminally ill child.  But what I’m saying is that you have to find what works for you, what will sustain you even through the darkest times.  Only you know what will work for you and your partner, but they key is to find it, agree to it, and stick with it.

It will serve you well in the long run.