Wins and Losses

My Fantasy Football team this year is, at best, mediocre. This comes as no surprise, really. Let me explain.

For those unfamiliar, the way fantasy football works is basically like this: Each team in a league has a roster of players, and each week the statistics for each of those players is added up to calculate your team's total points for the week. Each week, your team is pitted against another team in the league, and if you have more points than your opposition for that week, you win your game. The wins and losses are tallied throughout the season, which determines who goes to the playoffs to battle head-to-head in a kind of fantasy Super Bowl.

I used to spend a lot more time managing my team than I do now--contemplating roster changes, picking up promising new players off the waiver wire, and dropping players who underperform. But these days, I do as little as possible to maintain my team. I just don't have the time to bother. I'm a bit too busy playing another game, one with greater consequences and a more important outcome.

I can't help but see an unexpected correlation between fantasy football, inconsequential as it always was, to how we manage the boys' health from day to day. Sometimes we're on offense, being proactive about making changes to feeds, breathing treatments, positioning. Sometimes we're on defense, reacting to random fevers, drops in oxygen saturation levels, or apparent lack of energy. We are constantly monitoring vital signs, overall energy, and mood, making adjustments as necessary. Every morning when I wake them up, I'm checking the score: Are either of them running a fever? Have low oxygen levels? Do they seem happy? Rested? Ready for the day? Every afternoon, excited and anxious when they get home, I do the same: Are they happy and energetic? Fussy and tired? Will they need extra breathing treatments and CPT? Will we need to call a doctor for advice?

Back in the days when I was more active in my fantasy football league, I was elated at the close wins and felt defeated by the losses. When I lost, I looked back at my roster and tried to figure out what changes I could have made that would have produced a better outcome. Now, every day is game day around our house, and of course, the wins and losses are vastly more meaningful than in any fantasy sport.

Since September, William has had to stay home from school or get picked up early (due to being lethargic and/or needing supplemental oxygen) at least one day a week, sometimes more. (John-Raven had his brief three-day spell in the hospital, but otherwise, he hasn't really had to miss school.) William finished a round of steroids on Friday, so as always, we're keeping our fingers crossed that he'll still be strong without them. So far, so good. We're starting off this week with a mark in the Win column because he was good to go to school this morning (a Monday, which is one of his common stay-home days, tied with Fridays). With careful planning, and some luck, our team will perform well this week and no one will end up on the Injured Reserved list.

Dryer Settings, Dance Steps, and Another New Normal

“Normal" is a setting on your dryer. 

This saying is often repeated among our circle of families with kids who have special needs (though not exclusively so -- I’ve heard it elsewhere). We are constantly reminded of the truth of that statement, and recently, we’ve had to recalibrate our sense of normal once again. Home oxygen, a continuously monitoring pulse oximeter, and private duty nursing are the newest additions to our daily lives. The first two are the result of William’s ongoing respiratory issues. The third has been long overdue.

These new things and people are much needed, but getting used to them still isn't easy. As if our smallish house weren’t strained enough for space, bringing in more equipment and people means we’re often doing strange little dances in rooms and along high traffic paths, moving boys and objects as needed. We limbo through the living room, breakdance in the bathroom, can-can at the kitchen, disco along the den, hokey-pokey down the halls. Sometimes, our movements are choreographed and we smoothly change positions and roles. Other times, we dart and dodge awkwardly around each other like beginners trying to find our footing and get in sync. We know the music, but some trickster is always changing the beat. Maybe Gloria Estefan was right: The rhythm really is gonna get you.

Adapting to these new steps has been tiring and a little stressful, but with each passing day, we acclimate to how they fit into the grand scheme of things. But isn’t that what life is, really? Adapting to change? The moment you get used to something, it becomes something different. Change is the only thing we can ever really count on.

So we'll keep learning and growing and getting used to whatever is next, because that’s what we do, and that’s how it is. We’ll keep dancing and watch for the changes. We’ll ignore the setting on the dryer. Dancing is more interesting than laundry anyway. And a better metaphor.