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Wednesday, September 28, 2011

Where I Am

Treasures from a wet fall walk.

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

6 comments:

Spring and Sean Family said...

Oh Katie, I feel like a stalker, I always seem to find your posts first. But I just wanted to thank you for this. You are amazing and I know it time Charlie's PKU will become routine and part of life. I watched how hard Marisa's diabetes was for Kitty, now it's just part of life, but there are still day when it just plain stinks. :) And thank you for that beautiful song. Everyday I need to look outside of myself and see the beautiful world.

Karen said...

Katie, we love you, your family, and your faith! I love reading your posts because I always feel uplifted after doing so! I'm so glad you are my friend!

Scott and April Earl said...

Dear Katie,
We do love you so.
When Rusty's son, Nathaniel, was born he continued to live each day (unexpected by the doctors who could not believe he was even born alive, let alone continued to live). We went to visit them a few days later and Rusty took me to a store to pick up something and to talk. He told me "Nathaniel is a perfect spirit in a broken body."
I continue to be amazed as Nate continues to live, and as his parents continue to nurture and love him and deal with the rest of life too. Truly pure inspiration. "God Bless us, every one!"

Linda M. H. said...

Thank you Katie. I love that song! Never heard it before. Your blog is always so uplifting. Love you!

Deb said...

Thanks Katie! It truly brightens my day to read of your love and faith. I love you!

Syme Family News said...

I don't know you really well Katie, but thank you for your posts and this song. You are amazing!