Puffy red eyes, pit in stomach, broken spirit, and bad hair. This is how I walked into Nate’s Holiday Party on December 15, 2011. Halfway through my second pregnancy, 20-weeks and it all changed. This year I walked in with a big smile, fancy dress, and great hair (in my opinion). Two years later I would never have imagined this is where we could and would be.
The story has been told many times (check it out here is you wish), each time with more joy and happiness. On December 15, 2011 I never believed I could talk about our 20-week appointment without nonstop tears . . . and yet, it’s where I begin every story. Every moment, every tear, every smile, every adventure of our family of four started on that day.
It would still be 3 weeks before we would hear the words Wolf-Hirschhorn Syndrome but December 15th was the day the Gawel path changed course.
We never felt sorry for ourselves. We never asked “why us, why not them.” On the other hand, we wondered why we were sent on this path. Not in a cynical and sad way but in a way that helps answer questions and process grief.
Most of my tears were alone when Connor was sleeping and Nate was at work. It was during that time when I tried to make sense of this new path.
“What does this mean for my future?”
“How will this affect my family?”
“Will I ever understand why Nate and I were sent on this new path?”
“Are we supposed to help others?”
“Do we need more love in our hearts and lives?”
Endless questions surrounding Nate and me. How selfish! Never once did I look at it from a different perspective.
Then one tiny moment changed my view. One snap of a photo helped me to see our story from a different view.
Maybe this path has nothing to do with Nate. Maybe this path has nothing to do with me. But rather the Gawels were given this path for Connor.
After watching Connor play with JD while in his stander it helped me realize this journey we were sent on could be for Connor. Why does it have to be about JD’s parents? The reason for our path of a rare diagnosis could be for JD’s brother. Having JD as his brother will help shape Connor’s future forever.
Maybe Connor will become a therapist as he enjoys watching and assisting during JD’s sessions. Or maybe Connor will invent a lightweight wheelchair that can convert to a running chair for active families. Or maybe he can start an organization to aid families that cannot afford proper medical equipment. Or maybe it’s subtle. Maybe Connor will be the kid in school that is nice to the one student that is always alone or stops other peers from teasing the quiet classmate. Maybe it will help him have a kinder heart.
It probably seems I am always thinking deep thoughts but when your life changes drastically you tend to reflect . . . A LOT!
Who knows where this path will take any of us. But I have stopped wondering why. Mostly likely I will never get a final answer but I sure hope we are living up to our end of the deal.
Many more December 15ths will come and go but with each one we will smile a little bigger and hug a little tighter.
|JD had a hard time taking his eyes off the lights of the tree|
|It's a little blurry but this is JD in his stander|
|JD wants to know why Connor get the fluffy hat and he gets the scratchy one|
|Look at the concentration while cookie decorating|
|JD is not impressed by decorating but he did enjoy a taste of the frosting|