Daddy knows

Mira's daddy knows what she likes.

Late this afternoon as he was getting ready to head home to help me with supper and bedtime, he told Mira's nurse that she likes the light on during the night. (Yes, she is blind, but apparently has some sensitivity to bright lights, and is much happier at night if it's not dark.) Such a simple thing, but how neat for that girl that she's got a daddy (and mommy and brothers and sisters) who knows some of her preferences, and will make sure they are communicated to those who care for her in our absence.

Matt's also pretty good at the medical side of things for Mira, too, after being her main person over her last few hospital stays. Today, when they decided to start using the bi-pap machine, the respiratory tech, who looked younger and probably newer to the job, was wondering out loud to Matt and the doctor where she was going to find a mask small enough to fit Mira well. Matt was able to tell her - go look in the sleep study lab - that's where they keep the less typical sizes. Sure enough - that's where she was able to go find one!

There's so much we don't know about our little girl, but also so much we have learned, and each time she hits one of this rough spots, we learn a little more and feel a little better equipped to keep her comfortable. We know we're not going keep her alive forever, but our hope is that she will live the rest of her life surrounded by people who love her, and know to the best of our ability what she likes and what she doesn't like, and that when her time on this earth comes to an end, she will not die alone, but with someone (or more than one!) who loves her right there with her.