Friday, May 8, 2009

The discreet pleasures of the second act

Last week, everything was new. We had to get the nursery ready (finally)! We had to figure out the pump! The monitor! The medicine schedule! We had our first meetings with the pediatrician and the therapy team. Each of those meetings was really intense, with all of us, including Max, totally focused on figuring out the plan. The room was buzzing with the energy everyone brought, and even Max, who knew he was auditioning for the part of Most Interesting Baby Under My Care, put on major performances at each meeting. Throughout it all, Carolyn and I felt a real sense of progress and direction.

This week, the pump, monitor and medicines are just tools in the home hospital. Carolyn met again with the pediatrician and the therapists, as she will every week for the next couple of months. She reports that everyone was flatter, including Max. For example, Max didn't do very well feeding from his bottle when the therapist was watching, despite having had a string of great days. And it feels like Max's care is a little more aimless, with the team more or less keeping the same regimen. Certainly that initial sense of excitement has dissipated, leaving Carolyn and me to face the quotidian reality of Max's second act.

Actually, although the second acts of most plays can be pretty forgettable, I can sort of see what this is going to be like, and it's going to be good. Max will make incremental progress, with some inevitable setbacks, of course. It's unrealistic to expect a constant stream of dramatic changes like the ones Max has gone through over the past couple of weeks. After all, how often can he come home from the hospital? (Answer: just this one time, I sincerely hope.) And while we won't really notice it, as the months go by, Max will mature and overcome some of his challenges.

Max's second act is off to a good start. I drove home tonight to find Max, Felix and Carolyn in the front yard enjoying a late spring evening. And Max isn't picking up new tricks, but he is improving on his old ones. He is now given to full-on belly laughs. He is absolutely delighted to have his mother tickle his feet.

The trick to this new phase is to actually enjoy each day. The past six months in the hospital were a raw torrent of emotion. Now we have to consider the possibility that we might all, as a family, have actual, drama-free, fun. It's enough to live in this moment, and not to think about what the third act might bring.