dedicated to Sandra
I was talking to my friend Sandra last night, checking in on how she's doing. Sandra is the mother of a little boy who contracted a vicious immunological encephalitis when he was two and a half years old that decimated his neurological system. From what I understand, he was a typically developing boy who laughed and played and spoke and ran and jumped, but after a fifteen-month stay in the hospital (yes, 15 MONTHS), he left severely disabled with countless medications as well as an uncertain recovery and future. Sandra, her husband and their son live what I would call an extreme life, where a typical day and night might include battling systems of care and juggling serious medical crises as well as working regular jobs and trying to maintain some sense of normalcy in one's relationships. To people who do extreme parenting, there is often no end in sight.
I checked in with Sandra because her little boy was going into the hospital again this morning for two surgeries, and I wondered what I could do for her. Sandra has the same sense of humor as I do, which means dark. Very, very dark. I imagine that given the shitty things thrown her family's way, that sense of humor sustains her from madness -- not anger, mind you -- but madness. I don't even think I could do justice to some of the hair-raising stories she has told me -- you'll have to just take me at my word. Madness.
We had a conversation last June about my Brothers and Sisters television show binge, and it was then that she told me about her infatuation with Gilles Marini, the extremely good-looking actor who plays one of the characters on that show. He's so good-looking that when I searched for a photo of him to put up with this post, I didn't even make it extra-large because it seemed almost obscene. When my son Henry began high school, I was excited to share with Sandra the fact that Gilles is a father at the same school, and that I had even sighted him once or twice, most recently at the Christmas tree sale. I know this sounds utterly ridiculous, but I don't care. When you're up all night with a child who is screaming for no apparent reason or waiting to speak to an insurance company for approval of a life-saving medication or juggling the schedules of mediocre nurses who stand you up, or -- god forbid -- trying to do some paid work so you can afford your apartment -- well -- you deserve to hear about your friend's proximity to one of your fantasies. As far as I'm concerned, you can think about or do whatever the hell you want. Whatever gets you through the night, right?
Last night, knowing that there was really nothing I could do to ease Sandra's anxiety or lessen her pain or that of her son, I suggested that I might contact Gilles Marini and ask him whether he'd fly out to the hospital where she's staying and pay her a visit. Sandra said that would make her feel much better, and we laughed like people do online when they don't type LOL (I despise LOL). A few moments later, I had the brilliant idea -- humor my conceited ways, please -- that there should be a Make A Wish Caregiver foundation that granted wishes to the caregivers of ill and disabled children and adults. At this very moment I have three caregiver friends, two of whom are in the hospital with their children for extended stays and one of whom has just left after an extended stay. I have another friend who has been caring for her severely disabled daughter for more than thirty years -- by herself -- and yet another who cares for his young adult daughter by himself. I have countless friends who have been doing this beautiful and extreme caregiving for probably what amounts to hundreds of years if I combined them. Hell, you know from my endless tales here on the old blog that I've been doing the same sort of shit for nearly twenty years! I'm sort of joking about the need for a Make A Wish Caregiver operation -- and sort of not.
Sandra's wish is that Gilles fly out to the hospital where she is bunked down with her recovering son in the PICU. She hopes that he'll give her a tango lesson. Gilles? Are you reading this? Hello?
Readers who are caregivers living the extreme life: what would you wish? Dream big, babies, dream big.