Three months after my discharge from the Marine Corps, at 22 years old, I met my wife Megan, on December 10th, 2002. The very next day, I was drawn like a moth to a flame into dealing with a long term, terminal illness. Megan had Cystic Fibrosis, and after 8 years or declining health, she received a double lung transplant, and a new lease o life. Our daughter Shelby was born in 2007. In early 2014, those recycled lungs, which had brought our little family three years of uncomplicated health and happiness, finally began to give out. She died from chronic organ transplant rejection on November 19th, 2014 while I held her hand and let her go. I'm a single father and widower at 34 years old, and no one has published a manual for it. I don't fit the mold, because there is no mold. I "deal with it" through morbid humor, inappropriateness, anger, and the general vulgarity of the 22 year old me, as if I never grew up, but temper it with focus on raising a tenacious, smart, and strong woman in Shelby. I try to live as if Megan is still here with us, giving me that sarcastic stare because yet again, I don't know what the hell I'm doing.
“The journey of 1000 miles begins with a single step” - Lao Tzu
It’s true. It the most literal sense, one cannot achieve a goal, or complete a journey, without taking a step towards the goal. No matter how trivial a task may seem, this quote is meant to bring perspective that even the most inconsequential of actions is needed to complete a journey...a single step.
Where this quote leaves much to be desired, however, is the scope of the journey. Not every side journey is “1000 miles”. Some goals are, figuratively, only feet away. Others may seem so distant that a single step would be insignificant. Regardless, the second step, and the third and forth and so on could not occur without that first step.
“My husband and I have only been married 5 years, I need more time to show him how much I truly
love him. I want my lifetime with him. I want the fighting, and loving. He has stayed by me though
everything, even when it gets so frustrating I could give up. Though we both are frustrated by my
disease, he has never let that break us. He won't give up on me. He has given up so much to make me
happy and to do what is right for me, never thinking how it's going to affect him first. He would do
anything for me, and this I know because he has done everything for me. I have never been so in love
with anyone else in my life. He is the only one that makes me whole. He is always loving me, and for that
I love him.”
Those words were written by Megan, in October of 2010. At the time, she was incredibly sick. An oxygen machine had sat in our living room, loudly buzzing away 24/7 for about a year so far. More often than not, she wasn’t home, she was in the hospital. I would mix and prepare her aerosol treatments for her, bring her her pills, wash her clothes, cook dinner, and go to work. I’d lift her into and out of the tub, and wash her hair for her. If we did leave the house, I would ensure she had everything she needed, including a wheelchair.
It took a village, make no mistake. Her parents were there for her, for us, whenever she needed. I couldn’t be there at all hours. I had to stay in a dead-end job, with a 2 hour commute each way, just so we could keep our insurance. Even when I would receive offers from nearby and more desirable employers, I couldn’t entertain them, because the 90 day wait for healthcare would have bankrupted us in medical bills. Her parents certainly were focused on her well-being, and Shelby’s, and more than made up for the times that I couldn’t be there.
It was a thankless job...or so I thought.