This essay was first published on January 19, 2017. It is worth a repeat because Dr. Yona Lunsky recently asked me for a few words about having a kid with a disability for a talk she did this weekend for the Down Syndrome Research Foundation conference. I scratched out a few thoughts for her and will follow up with another post, specifically about moms’ mental health. But first, this…
…or the work-life balance and how I’m totally faking it all the time.
I’ve never struggled this much to prepare a presentation. I was asked to speak to the Rare Disease Foundation‘s parent support group in Vancouver on the topic of work-life balance. I pulled some quotes. Wrote speaking notes. Created some questions. The presentation was last night and still I floundered. I have no definitive solution to how to achieve work-life balance, especially if you have a kid with a disability, like I do.
How do you balance work and life? I have no freakin’ idea. I didn’t know how to do it when I had two typically-developing kids in the 1990’s, and I most certainly don’t know how to do it now, with my remaining complicated kid in my nest.
I called my talk Leaning Out to temper Facebook COO Sheryl Sandberg’s book, Leaning In. Her book is described as ‘compelling women to reach their full potential at work.’ Well, in November, I had to resign from my job because I couldn’t figure out how to be available to my kid and to keep working in a staff position. So I’ve leaned out. Way out.
I used to believe that you can have it all, but not all at the same time. My youngest son has taught me that having it all is overrated – what is this ‘all’ anyhow? A big house, full-time job, annual tropical vacations? I think we’ve been sold a big fat lie about what’s really important in life.
My talk was a jumble of what I’ve learned over the past 23 years of motherhood. In the paid work world, I’ve worked full-time, part-time, on contract and as a freelancer. Other times I’ve immersed myself in unpaid work. Some days I fill with grocery shopping and sitting on a log, watching the dogs at Kitsilano dog beach. In leaning out, I’ve been humbled about how much I don’t know. It was so easy to adopt an identity when I had a job – it was handed to me in a position description. Now, I’m making it up as I go along.
Here is some inspiration that I lean on instead to find my way. As Ian Brown says, having a kid with a disability means recalibrating all the time. Most of this is not in your control. In redefining my own identity, these three philosophies help.
1. Reject the Perfect
Brene Brown describes this best in her TEDTalk, The Power of Vulnerability. She says, “imperfections are not inadequacies; they are reminders that we’re all in this together.” We must stop pretending everything is okay all the time and allow ourselves to be vulnerable. To do this, we have to find safe places to let our guards down to stop being ‘special needs mom’ cheerleaders – like with other moms over coffee or Facebook and in support groups like one I spoke to last night. It is so important to find people who demonstrate that they’ve got your back, no matter what. (That, and never clean your house before another mom comes over – this sets a really bad precedent).
2. Embrace the Slow
Having a kid with a difference forces you to get off the ‘regular person’ treadmill of life. Life is busy, yes, but in a different way. You get transported to a different planet that you never bought a ticket to – one with great frustrations with hospitals, society, social services and education systems. There are times of great slowness – while helping a child get dressed, or waiting for a whole sentence to come out, or summoning all your patience for a kid to finish their meal. In these slow times, it is so important to embrace the small joy, as Lisa Bonchek Adams gently reminded us.
I’m also fond of this New York Times Essay by Tim Kreider called The Busy Trap. In it, he says, “busyness serves as a kind of existential reassurance, a hedge against emptiness; obviously your life cannot possibly be silly or trivial or meaningless if you are so busy, completely booked, in demand every hour of the day”. Carl Honore’s In Praise of Slow book and movement also offers similar sage guidance.
3. Remember that unpaid work is work too.
Finally, I suggested banning the words ‘just a mom’ and ‘volunteering’ from your vocabulary. Work is work is work. We focus so much on what we do and how we do it, we forget about the why, as Simon Sinek reminds us. Caring for another vulnerable human being is the most important work there is. It is what makes our world go round. Our society doesn’t value unpaid work, but that doesn’t mean that we shouldn’t value work that doesn’t come with a paycheque. Think about writing a Mom Resume that outlines all the skills you’ve acquired since your child was born. Writing it down gives it power and makes it real.
But sadly for last night’s audience, I had no real wisdom, no solutions, no fixes, no way to achieve this elusive work-life balance. I mostly talked out of my butt, and used other people’s words as inspiration. I was pleased to spark conversation, and it was heartening that others felt safe enough to open up about their own struggles.
Accept that recalibrating is okay and to be expected. Talk about your imperfect life in safe spaces. And value the work you do, even if others don’t. As I seek acceptance of my current messy life so I can find peace in my heart, I hope you can too – in your own way and in your own time. xo.