Odysseus, the Jokester

Bo has gained over a pound an more than 2 inches since we arrived in New England. He is more often in high spirits and laughs a lot, "talks" a lot, and is busy catching up and surpassing his 4 month milestones. He literally has a new lease on life.

For me, it has been a true vacation. A permanent one. I was given a vacation from the conventional knowledge's prognosis for Bo. We are no longer waiting for him to die, as the University of Michigan physicians would have us believe. They suggested a consultation with the Palliative Care "we're sending you home to die" Team before our discharge in July. Now we can even dare to plan for Bo's life, for a long-term plan. We got a vacation from a terminal diagnosis and are basking in the sun of managing a chronic illness. It is like a miracle. It is a miracle. It is more than I could hope for. More than I dared to dream of.

I told Dr. Puder, his magician at Children's Hospital of Boston, that I would have to do something big for him to commemorate Bo's high school graduation. Maybe a Seabrook beach house for his team. Or a tenured chair at Harvard. Or at the very least, contributions to the Foundation that supports all the kids on Omegaven whose insurance won't pay.