Wednesday, September 28, 2011
Where I Am
Sunday evening we had dinner with a couple here (both are professors in Keith's department) who have a son and daughter. Lucia, the daughter, has PKU. Andrea (her mom) greeted us at the door and explained to Lucia that this was Charlie, the baby that has PKU, just like you. Three year old Lucia excitedly grabbed my hand and led me upstairs to her room where she showed me her toys, pictures, fish, etc. She was the picture of a happy, worry-free childhood.
During dinner we talked a lot about PKU and a lot about other, normal stuff as well. Andrea offered to teach me how to make a special bread Charlie can have. They were warm, at ease, and I kept mentally pinching myself at our fortune of their having befriended us. PKU was just a tiny part of their life. They explained that they hardly thought about it anymore.
Andrea admitted that, of course, it hadn't always been like that. For the first year, being a natural worrier, she had fretted over the dangers of PKU and what it meant for her daughter's future. Jim, her husband, explained that it gets easier after the first year or two. Managing PKU gets easier as it becomes a habit. Then Andrea said something that has stuck with me. She said that everyone deals with it at a different pace. And that is okay. She said she didn't know where we were with it, but she understands how it feels and it is okay to deal with it at our own pace. She wanted to have us over though so we could meet Lucia and see that everything really is going to be okay.
There is a difference between knowing something with your mind, and having an emotional knowledge of something. Before this weekend I logically knew that Charlie would be fine. That is why I weighed out his little bowl of food, always gave him is special formula (power milk, as we call it), and took twice-weekly blood samples. All of those things assured my mind that he would be okay. Meeting Lucia assured my emotional mind that he would be okay.
Meeting Andrea let me know that it is okay if I am still coming to terms with PKU. They are further and further apart, but there are still days when I have a hard time with it. Days when I wonder how this will affect his future, how we will cope with it as a teenager, what this means for our family planning, for his future family. There are days when I still hate that it affects all of those things.
I have come a long ways since last January when I first heard the term "PKU" and I couldn't go more than a few hours without crying. I have a more positive outlook on it then I ever could have imagined back then. Really, really, life is good. But sometimes it is nice to know that it is okay if I am still working through it; still coming to terms with this curve ball. It is okay to admit sometimes that life is hard, as long as we remember the good too.
P.S. While thinking about this post I ran across this post and thought of this song. The morning after "diagnosis day" (when we first got the PKU news), Keith and I were driving back to the hospital for another day at the NICU. The sun was just warming up the sky and this song came on the radio. I still remember where we were in route. That was the moment when I peeked outside of my own situation a bit and saw that life was still good. I felt like this song somehow explained what I couldn't at that moment.
The video is a bit sad, but the song is what made me breathe a little easier that day.
Hello World by Lady Antebellum lyrics here