Those of us living with chronic illnesses have usually learned, often the hard way, how to advocate for ourselves with our doctors, nurses, pharmacies, insurance companies, copay assistance programs…the list goes on and on! This week, for #MotivationMonday, I want to share a story to encourage you to advocate for your family – and for yourself – in all parts of your life, not just when it comes to your healthcare.
The pandemic begins – for us that meant distance learning.
Having a mom with a compromised immune system has made this year HARD for my kids. I’m sure many of you – and your kids – can probably relate. Due to my higher risk and our desire to be cautious, our lives have not changed significantly since lockdown began 10 months ago. My kids have only had each other (and occasionally their 2yo cousin) to play with this entire time, and we decided that going back to school in person was too risky. (And, in any event, our local schools are now back to distance learning anyways!)
So it’s been months of distance learning for us. Keeping my kids’ spirits up during distance learning has been extremely challenging. Keeping my own spirits up so I can keep their spirits up has felt nearly impossible some days! But, even though I’ve been feeling extremely isolated, I know I’m not alone in this struggle. So I wanted to share two changes that my family has advocated for that have made a huge difference in our current daily lives.
I made my career – and myself – a priority.
When we first made the decision to stick with distance learning this school year, we knew that our kids would likely need a lot of help – especially our first grader who didn’t even get to finish Kindergarten in person, poor little dude. My husband works a 9-5 office job (though he’s lucky to be able to do so from home right now) and I am a freelance writer. When looking at our careers side-by-side, my flexible, contract-style work made me the obvious candidate to oversee our kids’ distance learning. My schedule was adaptable, I could do my work whenever there was time, and, assuming our finances could handle it, I could even turn work down if need be.
So I jumped all in. I turned our dining room into a classroom and dedicated more or less my entire day, every day, to getting them through their classes and assignments. And I will admit that I have actually found some joy in being able to watch them learn and from being together so much. I’ve loved seeing my first grader’s reading improve, my third grader being so responsible for his own work and coming alive when his teacher calls on him, and my nearly 3-year-old “go to class” and “do work” just like her big brothers.
But I also started struggling with a loss of self. I was crushed under the weight of distance learning responsibilities, constantly trying to meet someone else’s needs and boost someone else’s mood at the expense of my own. I didn’t have any time or energy leftover for my career or for myself. I turned down interesting writing assignments and stopped being involved in the patient advocacy work I find so fulfilling. I stopped connecting with other patients in the chronic illness community because I just didn’t have bandwidth. I was tired of being around people but at the same time lonely and resentful of my husband, who got to work all day alone in his office, completely (or almost completely) uninterrupted.
Finally, I decided that even though my career is far more flexible than my husbands,’ that doesn’t mean my career is less important than his. We both made the decision that distance learning was the right choice for our family, but we never truly decided that it should fall completely on me to see it through. That happened by default. That was something we needed to reevaluate.
I also realized that even given the current pandemic circumstances, I shouldn’t have to live in a situation where I never get any time to be alone or take care of myself. That isn’t sustainable. To be a functioning adult I need at least a little time alone where no one is touching me or demanding things for or crying or begging for help. Or snacks. Why do they need SO MANY snacks?? I needed a moment to think straight. To have it be quiet for a few minutes. And when I sat down and explained these inequalities to my husband, he agreed that it wasn’t fair to me.
So he talked to his boss, who agreed to a new work schedule going forward. My husband now works 9-hour shifts four days a week and a half day on Fridays – so that he can be the one to oversee distance learning every Friday. This gives me uninterrupted time to write, to connect with other patient advocates, to advance my career, and to spend a bit of time alone. To enjoy the sound of nothing. This weekly break has made a huge difference in my emotional well-being, and it has given me the opportunity to get back to the work that I love so much.
It isn’t a perfect solution – I still get overwhelmed and frustrated on a regular basis Monday-Thursday, and my husband struggles with the kids on Fridays because they take advantage of the shift in authority and schedule. But at least now my husband is also taking responsibility for being a parent during a pandemic. We found a way to keep both of our careers alive instead of sacrificing mine. We’re both playing a role in helping the kids get through this difficult season. And my resentment has been replaced with a feeling that I have someone on my team, supporting me and my goals in spite of the difficult circumstances.
Now I do realize that we are extremely lucky to both be able to work from home and to have the option to shift my husband’s schedule. I’m not suggesting that what we’ve done here would necessarily work for you and your family. But what I am saying is that you never know until you ask. We came up with an idea that we thought would work better for our family as a whole, and we asked for it. And his boss said yes. But if I hadn’t decided to make my career – and myself – more of a priority, we never would have brainstormed this idea, we never would have asked, and I’d still be doing the distance learning battle completely on my own. Miserably.
We also told the school we needed flexibility.
The second change we made that has had a big impact on our day-to-day lives has been to tell our elementary school that our family needed a little flexibility when it came to the distance learning schedules they expected us to follow for our two boys.
For weeks we tried to stick to the schedules that they gave us – which required my boys in two different grades to do two different specials classes (art/music/PE) at two different times of the day. It was a disaster. I’d be trying to force one kid to do math while the other was bouncing around the house doing a video for PE. I’d give in and let them do PE together, only to be met with a separate art assignment for one kid later on, making the school day longer. Everyone hated it. Every day.
So, I politely told the school that my first grader would be doing the same specials rotation as my third grader. I said we would be willing to submit the first grader’s work, but that it wasn’t practical for our family for them to do different specials at the same time. The teachers gave me their blessing on the idea, and this change has made a world of difference for my boys – and for our family as a whole.
Instead of specials class being a time where one kid was mad about having to “be in school” while the other “has fun,” it’s now a fun break for both of them. And doing specials together has given them a live “classmate” for at least part of each school day. They shoot hoops or run around the block together for PE. They dance and listen to music together and play instruments together for music class. And we’ve all sat down to do art projects together at the kitchen table during art week. This simple schedule change has made our distance learning days more fun, and much easier to get through.
I decided to make having a functional daily schedule for our family a priority, rather than simply accepting a schedule that had been handed to me by someone else. I considered what changes might make our lives better and I asked for it. And the school said yes. Like my first example, if I hadn’t taken action and advocated for my family’s needs, I’d still be fighting my first grader every morning at 9:25am when my third grader went to specials, and then fighting him again at the end of the day to complete his own specials assignment.
So my motivation for you this Monday morning, is to ask yourself whether there are any changes that you could advocate for in your life – big or small. Is there something you could change – about your routine, about the division of responsibilities with your partner, about how you care for yourself – that would make a difference in your day-to-day life right now? If you can think of something that might help make your life easier: ask for it. You never know, they might say: yes.
