Like many of us, I'm realizing that there is no date in the near future when we will “go back to normal” because the truth of the matter is, normal is forever changed. And that’s okay.
It’s easy to spin into a dark place when you realize life is taking you way off the course you imagined. It’s scary to go someplace new without a road map. It’s hard. And yet, if there is anything life has taught me in the last several years, it is that we can do hard things. Even more, when we do, something deepens in us, and the life we create from those challenges is deeper too.
When my middle daughter, Eliza, was in the NICU, my focus of hope was on the day we walked out of Room 8 and back into real life. In my mind, the discharge to home somehow felt like it would be a great return, as though we could check the box, finish the course, and graduate. When doctors started testing for incurable, terminal conditions, my focus of hope transitioned to survival. I just wanted my baby to live. And when we got the diagnosis, my focus of hope turned to finding a treatment, longing for the day when she could be cured of the debilitating effects, like insatiable hunger, that come with Prader-Willi Syndrome. I cycled through it all. I grieved the loss of the life I had imagined and grieved again when I realized finally that there was no finish line to cross in this new course.
I still remember with clarity the waves of questions that relentlessly came each night. Would she be happy? Would I be happy? What happens if she never leaves our house for one of her own? And what happens when we’re no longer here to care for her? The grief wrapped itself around me like an uncomfortable blanket I couldn’t shake. I truly questioned if I would ever again feel light…if I would ever again have days that weren’t consumed with thoughts and fears about her life and my ability to handle it well.
More than five years later, I find myself feeling much the same way. When COVID hit, my first thought (like so many others) was, how soon can we get to the other side of this? Fourteen days? Three months? Give me a finish line so that I know I can cross it. That changed to fear. Will we make it? Between Eliza’s underlying medical issues and my husband’s job as a doctor at one of the largest public hospitals in Seattle, I became obsessed with the thought of mere survival. That’s still a real fear of mine. And like everyone else, I want there to be a vaccine…some kind of cure or treatment that can take it all away. But I learned the hard way through our efforts to fund research for a PWS treatment that getting there is a long, slow process. I have faith that both will come, but I can’t wait for that to happen before I start living in the world I have right now.
The parallels between these unexpected journeys give me some perspective that I hope is helpful, which is that not only can we do hard things, it will be in and from those seasons that we fully live our best lives. Grief and suffering dig channels where love can enter, and when we are open to it, that love will transform us. All the extra baggage we get so preoccupied with falls away in crisis, leaving only the true and essential.
Sitting in the NICU, holding a baby covered in wires and tubes, I wondered if life would ever be the same again. And I can tell you, it hasn’t been. For that, I am so grateful. That’s not to say I’d choose PWS for Eliza any more than it is to say I’d choose COVID for our world. They’re both painful and unfair and terrifying. But I know this: from great suffering comes great transformation. I know for us, our faith grew deeper, our love grew stronger, and our joys became rooted in the things that circumstance could not shake. We have walked through fire with that girl, but we learned we can rise from the ashes.
May we acknowledge our collective experience of grief and fear and struggle and find ways to lean into the love and lessons it brings with it. May we stop waiting for the finish line and start opening our eyes to the wonders of this season. Normal may never be the same. We may never be the same. And one day, if we’re lucky, we may just be grateful for that too.
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