From the Blogposts » inbox

Fatboy and Beautiful – Five Wonderful Years

Maid of the MistFive years ago today, I asked Beautiful if she would love, honor, and cherish me  for better or worse, in sickness and health – she said “I do,” and so did I when she asked me. We kissed and ran down the isle to begin our new lives together. I remember it like yesterday. I also remember it like it was a lifetime ago.

So much has changed: jobs, where we live, plans for kids, the car she drives, starting our business almost 3 years ago, and now Beautiful working from home since February. We’ve been blessed with great trips, momentous family occasions, a roller coaster of health that always works out, and great friends and family that walk with us on this journey called life.

One thing is certain: I couldn’t have picked a more perfect partner to go on this journey with.

To make this year special, since we always seem to be running tight on the budget at our anniversary, I decided that we should go to Niagara Falls and spend more time with my grandparents as a layover and rest zone before and after. A few very hard weeks of working later, we had met the goals needed for the trip, got a falls view hotel on the Canadian side, and headed to Ohio.

No breakdowns this time!

We made it to my grandparents’ just after dinner on Monday and got to spend the next 2 days with them and my parents all in the old farmhouse. We left yesterday morning and drove through gloomy skies up into PA and NY and arrived at the hotel at 2:00. With check-in at 4:00, I went on in and asked if we could check in now – sure. We went through the formalities of the payment and ID and then he seemed new and asked the manager beside him what the difference between these rooms he was looking at was. “Those have Sleep Number beds.” At that point, my hotel training under the vast experience of Beautiful’s dad kicked in, and I quipped, “If it makes any difference which room we get, we’re here for our 5th anniversary.” The manager smiled and pointed at the screen and instructed him to pick ,”that one,” and wished us a wonderful stay and congratulated me.

I already saw that the paper had a complimentary upgrade to a high floor. We ended up with a room on the 15th floor. Upon entering the elevator, we saw that there are only 15 floors! Top floor, baby! We had purchased a city view but were suddenly in a room with a king bed, chair, LCD TV, jacuzzi tub, AND a view of the FALLS! I got choked up and I still get choked up looking out our window as I write this. It’s simply amazing – another bucket list item done.

We quickly rushed as fast as my lungs and legs could get us in the freezing misty rain to Maid of the Mist. The wind was howling to begin with, and then approaching the American Falls, the spray was intense as we slowly went by. As we approached the horseshoe of the Canadian Falls, the wind picked up a ton – hurricane force – and we were in awe of the volume of water, volume of the water’s noise. I took videos and photos until I couldn’t stand to keep our electronics out in the elements any longer. It was 1.15 miles, all uphill, back to the hotel where we had to turn the water all the way hot to thaw out our bones because our jeans got soaked on the boat.

This morning greeted us with the sun coming up over the falls in a golden yellow that looked like a fire in the clouds.

We’re off for more picture-taking and scenery now that my Vest and treatments are done.

Happy anniversary, Beautiful.

Our View

Canadian Falls

Cystic Fibrosis and Divorce

Love and MarriageDespite having cystic fibrosis, I live a charmed life. My fibros with their wonderful women by their sides know exactly what I’m talking about. As a kid, I had no concept that I would be a less-than-desirable partner when I grew up. As a teen, it started to become more evident that I wasn’t like the guys who had girls hanging off their arms, soon followed by the realization that CFers have the deck stacked against them when it comes to finding work that can support a family. Our wedding day was, without a doubt, my happiest day of my life – but the story doesn’t end there for couples, does it?

Divorce is rampant with rates around 50% for decades now and having a child born with CF sends those odds through the roof, certainly in the 60s and 70s  when CFers were dying by the time they were 12, almost without exception. Money fights are still the biggest cause of divorce in America, and having a CFer will almost certainly put financial strain into all but the richest’s relationships. So…

A new era arrives

What happens when CFers start getting married? [Read more…]

A Season for Everything

season-summerI’ve had many seasons in my life, but they just seem to come faster and faster. What I’m not sure of is whether it’s just a perception that comes with having more years’ experience and time speeds up or if it’s because we are causing so many changes. Since we have such a broad audience of CFers, family of CFers, and friends and those generally interested in things we experience, this is a topic for all of us.

I remember when our 9-week grade cards took forever and a day to come around in elementary school. Then in high school, things started to revolve more around semesters, but we still had the 9-week crutch to break things up. I was in and out of college so many semesters, that whole thing is a mess to me, but I can tell you that my last year of college (31 credit hours) was both the longest and shortest year of my life! That speed has only been surpassed by the months that have gone blazing by since. We’ve been to Tennessee for a week, Ohio for a weekend, and nearly tripled the work that comes across my path for work since graduation.

Where does the time go?

All of this speeding up has me concerned about how much time we all have left. [Read more…]

What Drives You?

DriveI’ve been having an heart-felt back and forth with a concerned mom via my contact form whose 16-year old son has become non-compliant recently. He’s described as wonderful and smart, but just doesn’t care to do many, if any, of his treatments any more and stopped a sport he had played previously. I got to wondering what drives him, because I’ve been there, done that, and bought the t-shirt.

I had to burn that t-shirt the day I knew I wanted to marry Beautiful, but it still didn’t fully change what I was doing to make sure that I gave us the most time together. I’ll place a lot of the blame on my eFlow not working properly to allow me to actually have the time in the day to do my treatments (and I probably wasn’t getting the meds as I should when I did them most nights). Since that’s a cop-out, I’ll admit that I should have been more aggressive in doing whatever it took to get to a solution to be able to do my nebs properly. I take full responsibility for that end of the deal. It was stupid and will never happen again. Now, let’s get back to the underlying issue at hand: drive.

“If you do not change direction, you may end up where you are heading.”

Lao Tzu

[Read more…]