So much of our lives are built upon expectations. We plan our higher education based on the expectation that we can have a career doing what we love. We raise children on the expectation that they will succeed even beyond what we ourselves as parents have achieved. We marry, with the expectation that our partner will be there by our side until one or the other has met their end.
On the simpler side of things, we expect to be scared, emotional, or laugh when we go to a movie. We expect hunger to be sated by dinner, and we expect to have thrills and fun at an amusement park.
We expect to be entertained at a concert, enjoying an artist or band plying their trade in front of us. Then...the unexpected happens.
“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.
As I write this, Sarah is cruising at 30,000 feet over Indiana. She’s en-route to Chicago, then Phoenix to spend 6 days with Drew’s mother at a conference. We woke up early this morning to get her to the airport, then for me to get Shelby to school and myself on to work.
For the next week, I’m back to basics. I’m effectively a “single father” in the sense that it’s my sole responsibility to make sure Shelby is taken care of, the clothes are washed, the lawn is mowed, and the bills are paid. Sarah has been here for almost 2 years now, and as time has progressed, her and I have become more and more of a team.
I won’t lie, having Sarah making sure that I knew when Shelby’s after-school activities were, or making sure that we had some food pulled out of the freezer for the next few days is nice in more ways than one. It’s funny, really. We have become so “in-tune” that she doesn’t trust me to be able to take care of myself and Shelby for a few days on my own.
I am 36 years old. Soon to be 37. Although I’ve held the titles of Marine (6 years), Lifeguard (3 years), Father (10 years), Widower (3 years), Husband (9 years), Boyfriend (9 years, cumulatively), and Student (13 years...I never went to college), the title that has been with me the longest, up to this day, is “Employee” (21 years).
I have been employed since I was 15 years old. I started as a lifeguard in high school, then on to the Marine Corps. After that, I worked retail for a few months, and as an iron pourer in a foundry for the better part of a year before finally landing a job in IT...my “career” field.
The longest stretch of time I’ve had “off” since I was 15 years old was 10 days.
I was planning, this morning, to write about the total solar eclipse that Sarah, Shelby and I witnessed just a week ago. As we sat on the banks of the Oconoluftee River in North Carolina, at the foot of the Smoky Mountains and watched the sun disappear, I was speechless, awed, and felt transcendent.
That was the plan, at least. We had a family vacation to those mountains, topped off by the eclipse, and I was sure it would still be at the forefront of my mind when I sat down to write.
But it’s not. The memories and pure joy at what I witnessed are still present, certainly, but a little rain storm has consumed my heart and thoughts since last week.
In about 36 hours, Shelby, Sarah and I are hitting the road. We’re not going to Texas, or the beach, or New York, or to visit my parents. We’re not planning this trip amongst anyone other than ourselves. I neither desired or solicited anyone else’s input with regards to our plans, other than Sarah and Shelby. We’re headed to the mountains in North Carolina, because of course we’re headed to the mountains.
In years past, our “family vacations” were, in general, a week-long trip to Myrtle Beach with Megan’s parents and siblings. Sure, Megan and I’s honeymoon was in Gatlinburg, and just the two of us. We also spent a week in Yosemite National Park and San Francisco together. Neither of those trip included Shelby though.
In 12 years as a couple, 7 of which included Shelby, we took only one trip where we planned and executed everything for ourselves...a trip to Maine. Shelby still talks about that trip, 5 years later. She remembers some things from our 4 or 5 trips to the beach, certainly, but it’s Maine that she wants to go back to.
This past Sunday, August 6th, would have been Megan and I’s 12th anniversary. Sarah, Shelby and I were camping, with Sarah’s sister, and as the morning light (and two dogs) woke me up, I immediately noted the significance of the date.
Then I crawled out of the tent, took care of the dogs, and made some coffee.
As I sat down for that first, glorious sip of coffee in the morning, I remembered that it was our anniversary.
Then I rekindled the campfire.
As Shelby woke up, crawling out of the nylon dome, I couldn’t help but think of the fact that she was emerging in the New York woods as the biggest reminder of Megan and I’s marriage.
I got her a pop tart to munch on as she sat by the campfire.
As Sarah noted on Sunday, I stepped off into the mountains last Friday, disappearing into the wilderness on the border of Tennessee and North Carolina. It’s no surprise to any of you that have read my posts for these past two years that backpacking, in isolation, is the most transcendent experience that I personally can have. No matter how my wanderings unfold, they always mean something to me.
However, I haven’t really experienced anything new in the three plus years since Megan was first admitted to the hospital. I’ve went to familiar places. Places that I could ramble into, disappear for a few days, and feel the comfort and safety of a home away from home. Places that I had been to so many times that I could navigate every trail blindfolded and say “Hello, again” to every tree.
I’m going to (try to) keep this short, simple, and to-the-point. Megan’s birthday was yesterday...the third since her death. She would have been 36, which, for someone born in the early 80’s with Cystic Fibrosis, is twice the normal life expectancy.
The first thing I thought of when I opened my eyes in the morning yesterday was Megan’s birthday. It was the last thing that went through my head as I closed them in the evening. Her birthday cycled through my head off-and-on all day, just as it had been doing for the past few weeks.
It is what it is. It’s white noise.