Bob & Katie

Tammy, my sister, is married to a state trooper named Tim. One of the other troopers in Tim's barracks had a baby with spina bifida a month ago. Tim gave me his number so we could chat and talk about each others' experiences thus far. His name is Bob and we talked on the phone for a while, where we decided that Joe and I would come to Bob's house for lunch.
Bob's wife's name is Katie, and their one month old is named Lila. Meeting with them at their home was an incredible and invaluable experience. It turns out Bob, Katie, and Lila all had the same doctors at the same facilities Joe and I will have. So what Joe and I will be facing in a couple of weeks, they just faced a month ago. We learned so much from them! They were so informative, helpful, and caring! They showed us pictures of Lila hooked up to all the tubes and monitors so we could prepare ourselves for the really scary parts. They explained what was particularly difficult, what wasn't that bad, and what was amazing. We got to see Lila in person, where her incisions were and how everything looks when they're healing. We got to see how Bob and Katie handle her safely... How to hold her, lay her down, feed her.
But the most valuable thing we learned from them is that, yes, she has spina bifida, but she's still just another baby. After the scary stuff is over, you still take her home, you still hold her, you still feed her, change her diaper, sing her lullabies, tickle her feet, kiss her nose! We learned that she's just another baby, just like any other baby, and that spina bifida is only a very small part of the big picture... that there's so much more to focus on... that even with her conditions, life will turn into something normal again even though it feels like our lives are about to be turned upside down and inside out.
Joe and I agreed that while we are in the hospitals, we will actively make sure we remember our visit to Bob and Katie's home, and that things will be normal soon. We'll remember little Lila, and that there will be life outside of the hospitals and the surgeries and frightening experiences we'll be in the middle of. We'll remember that, like beautiful Lila, Mira will have our home to be in, and her own bed to sleep in, and a whole life waiting for her outside of the initial shock of her surgeries... That just like any other baby, there is so much more waiting! So thank you, Bob and Katie, for letting us see the light at the end of the tunnel first hand, for letting us experience what no amount of research can give, and for showing us what no doctor would ever be able to explain!