Lessons from Living in Uncertainty (Day 214)

I've lived in a state of constant uncertainty for over 14 years. The moment Lily was diagnosed with a brain tumor, everything I was certain about--her 2nd birthday, her growing up, having more children, building my career and even my marriage--became immediately uncertain. What if surgery injured her and she was wheelchair bound? What if this meant that our marriage would flounder or our plans to have another child would be lost in the chaos of cancer? What if she did not make it to her 2nd birthday? What if she never made it to a first day of school?

Nothing was certain then. And even now, so many years later, uncertainty is ever present. 

I remember the first time I traveled again for work--and fearing the worst for Lily--what if her shunt failed then? And still, now, when I plan things away from Lily and away from home, I fear the same exact things. 

But I go anyway. 

I have to. Or the uncertainty wins.  

I've been thinking a lot about my life of uncertainty today--and how much living in this COVID-19/pandemic world is like living the life as a family impacted by childhood cancer. It is not exactly the same, of course, and of course, we are living the pandemic and childhood cancer all at once. But, the same sense of uncertainty, confusion, what ifs and big emotions exist in the pandemic as they do in our experience as a cancer family. 

Here are some lessons I've learned from living in the uncertainty:

1. It is not easy. I hope I never make living in uncertainty look easy because it is not. It is a daily struggle to stop myself from spiraling. It used to be the late nights spent obsessively reading research studies or googling and searching for other ependymoma survivors. Lately, it is constant, unnecessary vigilance--asking Lily how her eyes are and questioning her, intensely, if she coughs. 

This is everyday, multiple times a day, this uncertainty that makes me certain something will happen to shatter our normal existence. 

2. It is a choice to live in spite of uncertainty.  I make myself go, always, even when the uncertainty is nipping at my heels because to do otherwise is to not live at all. It is a choice I make everyday. I made it last night when we went to our friend's surprise party and I'll make it again tonight when we go out to dinner for our anniversary. I make it in little ways when I let Lily sleep over a friends or go out for the day wandering around town--I always worry, what if she has a shunt malfunction symptom? What if her balance causes her to fall? But, if I make a different choice, my daughter is a prisoner to uncertainty. 

Cancer took away enough. I don't need to let it win. 

3. You have to acknowledge the place your uncertainty comes from--is it a real place or a place you've made. The root of my daily uncertainty comes from a very real place: my daughter had a brain tumor, she has a shunt, the shunt has malfunctioned and we always have to stay vigilant. What feeds the uncertainty are the places I make for myself--what if Lily is alone in her room for 2 hours and vomits and tells no one or slips into unconsciousness? This exact scenario has never happened before--it is a mix of my experience and fear that feeds this thinking. Every time I find myself spiraling, I have to stop and remind myself of reality--and then I have to choose to let it go. 

4. Uncertainty has always existed. Even before Lily's diagnosis uncertainty existed. Nothing is certain. Having certain knowledge of a particular issue (i.e. Lily's shunt) does not actually make anything less or more certain. It is just a piece of history or information you possess. The moments and the future are always uncertain--and that does not have to be a bad thing. 

5. Uncertain events are not always bad ones. I try to be open to the good uncertainty too. I have no idea what this week will be like, but when I try to frame up my uncertainty in a positive way (maybe something great will happen!), I find my mood and my ability to move forward is better. There are great, wonderful surprises in life and I hate my fears and uncertainty to be in the way of fully embracing those surprises, as they comes.