If you took calculus (and actually remember any of that crap), you might recall the concept of slope, aka rise over run, which is often used to define the rate of change over time. When I think about Jackson’s health, sometimes I think about it in terms of how successfully are we controlling the slope, preventing any acceleration of a decline. I guess all humans have an inherently downward sloping health trajectory, at least after a certain age (20? 25?). But its definitely steeper for some than others, including Jackson. In this regard, I think we have been very successful recently. Jackson’s baseline health has been fairly consistent in the last several years. We have reduced the hospital stays materially, going from several week long stays a year to one in the last two years. This is a real source of joy and pride for the whole family.

But those gains are not without a cost. They are realized through an ever-increasing level of interventions and limitations. We have added home bipap, nebulizer, more home oxygen, and, most recently, a respiratory vest to our daily routine. Jackson’s ability to travel, go to events, or basically just leave the house has definitely reduced. He is no longer able to take longer car rides, so our family vacations are at local(ish) lakes, not the beach.

Overall, I think this dynamic is fine, or at least acceptable, for Jackson. His health is our primary concern, even if it is sometimes at the expense of enriching his daily experience. But what is disheartening is the more frequent bifurcation of our family unit. We simply can’t do much together as a family. If you look at any pictures or posts, or see Santina or I with Luca at an event, it is just that, Santina or I with Luca. Going to things like the zoo, a baseball game, or a festival have to be split. One of us will stay with Jackson and the other will go with Luca. Or, if someone watches Jackson, the three of us will go. But rarely all four. I don’t see this changing in the future. And really, it probably shouldn’t, as doing so would add unnecessary risk.

So when others ask, how is the family, how is Jackson, my stock answer is always around “great, but there is work to make it that way.” (You probably have your own stock answer when asked the same.) In true American fashion, you really can’t/aren’t expected to get into too much detail on that question. Maybe that’s why blogs started. You probably don’t think about your family’s life trajectory in differential calculus terms (or at least I hope you aren’t cursed with the same mental analogies), but I still wish for improving slopes for you and yours.