'Tis the season

'Twas the night before Christmas, and all through the house, not a creature was stirring, except for my twitchy left arm, draped over my wonderful spouse. Oh, and maybe our daughter. She's been waking up more often at night lately. Perhaps one of her grandparents spilled the beans about Santa Claus coming.

In lieu of sending out Christmas cards, we're going digital this year. Less writing, folding and stuffing for my weakened hands you see. And one less item on Kirsten's list. The weaker I get, the more her workload grows. So when you don't get something in the mail from us, it doesn't mean Santa told us you were bad.

If 2004 was a year of tragedy for us, then 2005 will surely be remembered as miraculous. Our daughter Eva was born on Sunday, April 10th, and with her arrival came a renewed sense of purpose and spirit in our lives. She is truly a blessing and inspiration. An amazing little human being. We are overwhelmed by love for her. Kirsten read that having a child is like agreeing to have a part of your heart walk around outside your body for the rest of your life. It's a bargain we'd make any day.

That isn't to say that life hasn't been challenging this year. Not only do we continue to struggle with my illness, we continue the adjustment to becoming parents as well. As any parent can attest, learning to juggle life with a child, jobs, and a home is no small feat. Doing it with a fatal illness feels like yet another miracle. Hopefully my retirement will bring some sanity back to our lives.

But anytime we're feeling low, we have only to watch our daughter smile. Eva is crawling now. Pulling up and standing. Getting into places we never thought possible. Seems she does something new everyday. With the eyes of an angel, she can melt our hearts with the slightest arch of her brow. She'll be walking soon. Maybe even saying a word or two. Every night I dream about one day hearing her say, "I love you mommy and daddy."

'Tis the season to be jolly. Time to celebrate the miracle of Christmas and the blessings in our lives. We wish good tidings to those we love. Merry Christmas and a Happy New Year to you all.

And to all a good night.

You can take this job and...

So what did you want to be when you grew up? As a kid I talked the standard line: astronaut, fireman, jet pilot, movie star, consultant, systems analyst, project manager. Ok, so maybe the last few are a stretch. I didn’t dream of living in a cube farm producing software for large conglomerates.

I’m done working now, my career more or less over. The progression of my disease has made it unfeasible for me to keep both my job and my sanity. It was a decision my wife and I agonized over for months. After all, barring a miracle, I won’t likely ever hold a job again. I think of it as being forced into early retirement. More important things require my time and energy now.

As careers go, I feel good about my work over the last 10 years. I did well in college, obtaining a Bachelor’s in Mechanical Engineering from the University of Minnesota in 1995. A few internships during school soured me on being an engineer, however, and I joined Andersen Consulting (now Accenture) to develop software. I wanted travel and I got it. I spent quite a bit of time on the road in places like Columbia, SC; Kansas City, MO; Morristown, NJ; Denver, CO; and San Francisco, CA.

I started as a programmer and worked my way up to manager, leading teams on large-scale projects for telecommunications companies during the dotcom boom of the late 1990s. As with every boom, there was a bust, and I found myself without a job in August of 2002, exactly one week before Kirsten and I were married. Much to her chagrin and my delight I might add. By that point I was burned out from all the overtime and travel, so for me, the timing couldn’t have been better.

I nearly went to film school after high school. I had my application filled out, but made the choice to go with my strengths in math and science. Instead, I lived vicariously through my friends struggling to make their artistic careers take off. I didn’t regret my decision, but I often pondered changing careers, trying my hand at film and video. My creative, right-brain-self always jabbing me in the side saying, “Don’t forget about me.”

So in the fall of 2002 I worked for free as a production assistant on a few local independent films. The producers seemed impressed by my efforts, at least compared to the other unpaid slackers. I queued actors for their entrance, ran errands, stopped traffic, and worked a 17-hour shift as a grip (for which I was paid a handsome 64 bucks). I even gave the lead actor a ride back to his hotel room one night. Oh the glamour of moviemaking.

Fun as it was, my aspiring film career was again put on-hold in May of 2003. I received an offer from Guidant Corporation, where I spent nearly three years as a project manager, the last year tainted by my illness.

Even though my career has been cut short by 30 years, I’m proud of my accomplishments. I enjoyed getting things done, solving problems, learning new skills. Most importantly, I enjoyed the people I worked with. But like so many in the working world, I never really loved what I was doing. I found myself wanting a better sense of fulfillment. I’d likely do things a little differently knowing what I know now.

I urge you to find what you love to do and pursue it today. So what if it doesn’t pay as well? So what if your parents don’t approve? So what if you fail?

As for me, I still have work to do. I’m not dead yet. I intend to spend more time with the people I care about, raise awareness for ALS, and indulge my creative side, pursuing my writing and videography. Who knows, I might even develop a book or screenplay. I want to live and die in the midst of doing what I love.