Uncertainty

You can imagine my dismay when, about five years ago, an elephant sized uncertainty moved into our house. There was no invitation. At times it's almost undone me, crushed me by his weight. At times I pretend the elephant is not there. And at times I have taken the elephant by the trunk and marched it to the front door. "You are not welcome here! It's time to leave. Goodbye, good riddance!" I walk away from him, the elephant of uncertainty; I can see him leaving in my head, squeezing through the front door. I run to my office downstairs saying to myself please go, please go, please go. I imagine he's gone. I tell myself: Finally! We can move on! 

But when I come back upstairs to get a drink, he's still there. Hasn't moved an inch.

If you have children, I wonder whether you recognized that so much of it would be filled with uncertainty? Our first year with our first child was enough to question my confidence ten thousand times over. And then congenital heart disease, this elephant, entered my life during my second pregnancy. The king of all uncertainties in my book. The question of your child's health. Life in the balance. We had an endless stream of questions after we received the diagnosis. When his heart was still the size of a grape. Would he be able to run and play like his sister? Would he have a normal life span? How many nights would we spend in the hospital? And the biggest uncertainty - would he survive?

In the five years since the elephant took up residence in our home, I've gotten more comfortable with his presence. I understand he is not leaving. There are stretches of time where he shrinks to the size of a tiny forgotten Lego in the corner. It's not a complete shock to wake up every morning and see him sitting there, like it was for so many, many months. It's been an active process of noticing what works and what doesn't, this living with the elephant. I've learned that I cannot let my wandering mind stay for long in the space of my son's future. Recognizing that I'm torturing myself with unanswerable questions is a first big step. When I catch myself doing just that, I try to bring myself back to the present. Stare out the window at the tree outside my office. Make a cup of tea and feel the hot mug against my hand. If he's sleeping, go into his room at stare at his skinny, adorable little self.

I've found my heart community; other parents of children born with imperfect hearts. Turns out community is essential to coping with the elephant, because as much as your friends and family can try to understand what it is like, the ones who have been there just know. The night before my son was born, in a hospital 450 miles away from home, my husband and I found ourselves standing in a circle holding hands with a beautiful stranger, a heart mom I had been communicating with by text, email, phone. Just beyond our little circle lay her son in his crib; physical proof that it was possible to somehow survive this, to live. I don't remember the exact words she prayed that night, but I have drawn on the connectedness of that moment in many other uncertain moments since then.

Sometimes the elephant makes me weary and I assign more certainty to a situation than is actually warranted. Eventually the thoughts come back; it must be time for surgery soon. My son been so tired, so cranky, not himself. It must be time. I start planning in my head the next trip to the far away hospital. One of our providers will put me back in my place. "Rachel, you can't schedule an open heart surgery simply because you want it done before he starts kindergarten." Oh. I guess I can't. 

I'm learning, in those moments, to go easy on myself. Of course this struggle with uncertainty is hard for me. I am, after all, human, Type A and all. We all deal with personal uncertainties and societal ones too, constantly. Acknowledging our struggle, recognizing what is within our control and what is not, and finding community can be useful for elephants of all sizes. 

The agony of uncertainty will always have a place. It's up to us to figure out how to live alongside our uninvited guest.