“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going. But the miracle is in the unfolding of the wings. You may not know where you are going, but you know that so long as you spread your wings, the winds will carry you.” – C. JoyBell C.
If you’ve read my blog for a while, you know that both of my kids have an incurable disease that we’ve been managing for several years. We’ve made it through quite a bit…regular scans, scary surgeries, even chemotherapy. What I’ve not mentioned is that my older son recently began chemotherapy for a second time.
Like the above quote, I am all too familiar with the feeling of not knowing where we’re going. Uncertainty is the essence of this disease. Unlike the above quote, I’ve yet to train myself to love it. While the image of our wings being lifted by the winds of our journey is breathtaking and illustrates ideal faith, I feel more like the above image: dangling perilously, flailing a bit, wondering how in the heck this happened. And I’d really just like to get down.
Lately I’ve been trying very hard to figure out why it’s been more difficult this time around. But I think I’ve finally figured it out.
I snuck this photo last week in the waiting room of the cancer center. I was curious about the dog. I mean, it’s cute and everything, but is it a therapy dog? Why else would you bring a dog into a place where so many immune systems are severely compromised? But what I also found curious about this couple is that I couldn’t tell who was the patient. I scanned the enormous room that yawned before us, crowded with other patients and loved ones. Come to think of it, unless there was a bald head or a mask, it was tough to tell any of the patients from their companions. Everyone looked gray, depleted, expressionless, anxious, burdened.
Until we transitioned to the adult facility late last year, we received all treatment and services on the pediatric side. When my son received chemo there during the course of a year, I always knew who the patients were: kids. As such, physicians and caregivers summarized and simplified the situations and care plans so that little minds could understand what’s going on. And by little minds, I mean children and their non-clinical, terrified parents. They used comforting, soothing words to make the big disease monsters less scary. While the outcomes were never certain, we were guided through the journey — carried, if you will — by the staff. I still didn’t love it, but I valued our guides.
My children are adults now. My signature on their paperwork isn’t even sufficient any more. Clinicians’ language is no longer softened or remotely sugar-coated to make things less scary. It doesn’t matter that we still fear boogeymen. We’re supposed to navigate the health care process on our own and already know what to expect. It doesn’t matter that it feels too complex and overwhelming to us.
Somehow this uncertain journey has become even less certain. We have less guidance. Less comfort in the care delivery. So much change. Unfortunately, I am still the same mom. While my kids are adults, they’re still my children. And this mom who wants nothing more than to scoop up her kids, comfort, soothe and protect them, has some adjusting to do. I don’t want to love the uncertainty. I just want to make peace with it.