Tuesday, July 31, 2012

A New Member of the PKU Club

Big brother Ethan, baby Reece, David, and Amy.
PKU is a fairly rare condition. Depending on the the source you read, only one in every 15,000 to 20,000 babies born are PKUers. What that means is that we meet a lot of people that have never heard of it and some who have but don't understand what it is. So when Charlie's dietician asked if she could give our contact information to a family who just recently joined the elite "PKU Club" our answer was an instant "OF COURSE!" It is a special thing to talk with someone who completely understands what it means to be a parent of a child with PKU.

A couple days later Amy (mom to sweet little PKUer Reece) gave me a call just as Charlie was starting his lunch. Our conversation was peppered with the exact same questions I had a year and a half ago as a brand new mom who was quickly moving through the PKU learning curve. We made plans to get together for dinner at our home, and more importantly, let Amy and her husband meet Charlie.

You see, it can be difficult to completely believe the dieticians and doctors that tell you that as long as the diet is followed your baby will be fine. Difficult because you are in a special hospital clinic and they are doctors in white coats (they are only there if there is a problem). It is hard to push the words "brain damage" out of your mind those first few weeks. But when you see another PKU child for the first time the doctor's promise becomes much easier to believe. You stare as this seemingly normal child walks into the room and a big part of the PKU weight comes off your shoulders. I know because I remember that exact moment for us like it happened yesterday and I wanted Amy and David to have a similar one. And I think they did. We got together again this past weekend at their home and had a wonderful time.

Beyond that, we have almost instantly gained a new friendship with a wonderful family. And a kind of unlikely friendship at that. They live an hour away, we are still in the student scene, and David is a successful dentist. There isn't much in our lives that would have brought us together besides PKU. I guess this is just one of it's unexpected blessings.


Spring said...

That is seriously awesome that you can give that same comfort that was given to you. What a special gift you can give - comfort and friendship.

Karen said...

Way to be open to sharing your experiences with others Katie! It truly blesses lives!

beckstarr said...

How awesome! I'm so glad that you could meet up with them! They look like a fun family, and I'm so glad that they got a little encouragement from seeing beautiful Charlie. Who wouldn't light up, especially knowing what you all are overcoming day by day! We love you guys!