Why?

About six months ago, I started to feel drawn to the idea of publishing another BLOG. I wrote my first entry a few weeks ago and started building the site a little over a week ago. Little did I realize the events that were coming. Today we are all in the wake,  the wake of a pandemic that will leave most of us changed in some shape or fashion. 

We still don't understand the long term impacts of COVID-19 in our lives, but the expectation is for most, this will be a short lived period that disrupts day to day living. A year from now this will  become "the story" they lived through and will share with future generations...the story about a time a pandemic caught the world unprepared, people started hoarding TP and Clorox, schools shut down, business as usual came to a halt, but out of the chaos, a pressure point was created. That pressure point created changes and policies that made things safer for future generations. 

For others, this will be the story that changes their lives unalterably. They will lose a loved one. They or those they love will be left with a chronic health impact. They or someone they love will have a financial impact that changes their future.  For those people, our stories will be different, but our journeys will be much the same. It is here in the wake that our stories come together. 

Since my daughter’s diagnosis of Moyamoya, I have struggled with trying to understand the “why” of this in our lives.

“How can something like this be the will of God? Is this God’s punishment for some sin I committed being born out on my child? Does God really think she has shoulders that strong? Does he think I have shoulders that strong? Is she being tested? Are we being tested? Where is God in this? Why? Why? Why?”

In my struggle to understand, I find it far easier to want to reconcile “Moyamoya” as something released on the world by a “satan” than believe that a loving God could/would have any part of something so terrible.  It is definitely far easier to want to lay my blame and anger for my daughter’s suffering/the world's suffering at anyone else’s feet (including my own ) rather than God’s. But I have come to believe when we look for “satan” in our stories, we miss “God” in our story, and when we miss God in our stories, the weight of them becomes far too difficult to bear.

And so if there is a 'Satan," this is where he/she sits. Not as a fallen angel, actively seeking to cause pain in the world - the perpetrator of all things bad. Not as the antagonist of my personal super hero story of evil versus good. She is within me - challenging me to look away from the light to focus instead on the darkness. She is the temptation to take off my “God” glasses in the face of the eclipse.

I have seen her when I first read the words “incurable and progressive.” I saw her over and over again in that first year following my daughter's diagnosis when the “surgery” that would “fix” things and get life back to normal failed. I saw her every subsequent ER trip, hospital admission, surgery and complication. 

I have been staring her hard in the face this weekend as I find myself glued to my Facebook feed, the news and twitter. I see her second guessing every action, interaction and next right next steps as she tries desperately to grab the wheel in the front of this Virus. This morning I decided to shut her back down. 

Four years in to our life altering event, I still haven’t figured out the “whys” of our story, but I have come to recognize the “whys” are less important than the “hows”. How will I choose to live today “in spite” of my story? How will I find joy, love and happiness? How do I honor and keep my eyes on God in the face of my child's suffering? Then I remember this is also God’s exact struggle. We are his children. He would not let us suffer unless there were a purpose.

And this thought brings me full circle to the realization that my story is just a small piece of a puzzle. The color is beautiful; the edges are sharp and jagged. My faith tells me my puzzle pieces fit perfectly into a much larger picture- one filled with darkness, light and beauty, all created by a single artist. I may never get to see the “final picture” in this lifetime, but I have faith when it is complete - there will be no sharp edges, no suffering and the purpose will have been made clear.