“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson
How many times have I typed uncertainty this week? Too many. Tomorrow is World Down Syndrome Day, and I wish I could go to Gigi’s Playhouse and celebrate with our friends, but I can’t. We’re going to be at home.
I feel like uncertainty has been the story of my life way before the coronavirus showed up. I used to be certain about everything. I’m a planner by nature. In fact, I love planners. At any given time I’m using at least two different planners. Okay, my friends who understand my planner obsession know that’s a lie. More planners. I have too many planners, okay? Planning is definitely my way of coping with uncertainty.
But about 8 years ago, a doctor told me I had a 4% chance of having a daughter with Down syndrome, and certainty flew out the window.
Twenty weeks of fear and uncertainty. And then even after Mia was born, another year of wondering if she was going to need heart surgery or if she would have other health problems. What would happen in the future? How would I care for a child with a significant disability? Constantly wondering when the next shoe would drop. I didn’t think I was going to survive.
Then everything was okay. Really. It took a long time, but everything was really okay. And in fact, turns out it was the best thing that ever happened to me.
Then my divorce happened, and I had no idea what I was going to do. During the worst of it while I was dealing with it alone, I had no idea how I was going to make money. I had no idea if I was going to keep my house. I had no idea if I was going to lose my kids. Every single irrational thought ran through my head all day, every day. I didn’t think I was going to survive.
Then everything was okay. Again, it took a long time, but everything was really okay. And even now, I’m starting to think it was the best thing that ever happened to me.
And I have no idea what is going to happen now. Every irrational thought is running through my head at any given time. But this time it feels different. Not because I’m not deeply concerned about my family, my friends, my city, and my country, but because I’ve realized that life is inherently uncertain.
No plan can prepare you for a pandemic or a job loss or having a child with a disability. Planning during uncertainty is like walking in a thick fog. You hope you’re making the right moves, but you feel lost and suffocated.
Many of us had grandparents who lived through the Great Depression. Or World War II. My great aunt lived though having polio. It was all terrifying and uncertain and somehow they coped. And then they thrived.
And every single day, I look at the evidence of uncertainty turning to coping and then thriving. She’s a tiny blonde with a big smile and an extra 21st chromosome.
None of this is to say I know what you’re going through right now. Or that I know everything is going to be perfectly alright and life will be exactly the same in 6 months. Or that it will be the best thing that ever happened to you. I have no idea.
And I had no idea that a little girl with Down syndrome would profoundly change my life for the better either.
But she did.
So don’t lose hope.