…and for the last six months, we knew this was coming. Her debilitating headaches that lead to an MRI and difficult choices no parent wants to make. Strong medical opinions that said do it – and others that said wait and see. Sleepless nights, more MRI’s, trips to Pittsburgh and life distractions I never knew imaginable.
Terms like “fenestration” which for this layman, means “drilling through the skull and puncturing the cyst to let the fluid drain” became all too common for me.
I felt alone.
But if I’ve learned anyting thoughout this proces, it’s that I’ve never felt less alone in my life.
My wife has been there the whole way and I’ve never felt closer to her. And while I play the role of strong-got-it-together-guy, she is truly my rock and I’d be helplessly lost without her.
Our families have rallied. My mother and my sisters have our youngest three in Boston. We get video and photo updates via text messages seemingly every hour. My family is divided by distance, yet closer than ever in spirit.
It just so happens that my wife’s sister and her husband are both neurology residents in Pittsburgh. Their expertise helped select the best doctor for our daughter. They have been with us daily, visiting, watching videos on YouTube that crack Bella up and explaining the challenging things our daughter has faced.
My work has been nothing short of amazing. Their approach? Take whatever time you need to handle this. Vacation time left or needed was never even a point of discussion. They’re like having a second family.
Say all you want about Facebook, but when you post a note about what your are going through and over 100 people like it, and half of them post support, start prayer groups, send good thoughts, make virtual get well signs, and send hundreds of notes, texts and love, man, there ain’t nothin’ cooler than that. I find myself checking Facebook hourly and reporting the latest to my wife and child. They are all met with smiles and misty eyes.
Friends continue to ask what can we do? So much so that I have to pinch myself to not take it for granted. It’s all so wonderfully overwhelming. Our neighbors feeding the fish and bringing in the mail, folks dropping off presents for Bella the night before we left to folks lining up to make meals and watch the kids when we return.
Our church has done the same. Putting out the word that this young girl had a huge fight in front of her. It seems like prayers, thoughts, and love in all shapes and sizes have been coming in from all over the world. Isabella’s story has reached places like Europe, South America and Australia.
And through it all, my wife and I are often told, “I’m not sure how you two do it.” Let me be really clear here – we haven’t done anything noteworthy. I’m no hero, just doing what anyone would do for their kid if faced with a similar challenge. You’d do the same.
As I sit here in the Ronald McDonald House of Pittsburgh, I’ve talked to tens of parents going through similar things. There are volunteers that make meals just to do something good, some sorority girls that made Thanksgiving turkey art for to decorate Bella’s hospital room, and corporate sponsors serving an early Thanksgiving meal.
And the person that has made all of this the easiest is the least likely candidate. I am convinced my daughter is destined for great things in this world. Tremendous fight, strength and determination and not one complaint. Not a single “Why me?” or “This isn’t fair.” The patient has become the teacher. And I’m being schooled by her every waking minute.
I know she doesn’t get it from me. I can only aspire to have that much game. She gets it from her mother, her family, her friends, her church and from complete strangers. She gets it from you. She gets it from the wonderful world that we are so fortunate to be surrounded by. A world she gets to witness firsthand through all of this.
Fitting that we will celebrate Thanksgiving this week. I can’t wait to raise a glass and toast, my new hero, my sweet Bella.
Isabella’s story encompasses many things. The amount of love, faith, compassion, friendship and support I simply wasn’t ready for. And with tears in my eyes, I can tell you that what could have been one of my darkest moments, was one of my brightest.
Humanity is alive and well.