Jer & Min Photography

This photo represents a true fear of mine.  I considered for quite sometime taking some sort of staged fear, but this is close to my heart and I decided to share it.

My son Gage has a genetic metabolic disorder.  Once per week my wife takes a blood sample from him and mails it to Primary Children’s Hospital to be analyzed.  We then wait for a couple days to get a return call from them telling us if he is doing well and if we are doing the things we need to do to keep our dear son healthy.  This will be ours and eventually our son’s routine for the duration of his life.

I’m not complaining, we are at peace with what his condition, but I still have fear each week.

I also however, have a great deal of gratitude for the people who work with us to train us and to test my son’s blood.  They have helped us more than we could ever express.

My youngest son Gage has PKU (read about it here and here).  Sixteen months ago when he was born and we learned of his metobolic disorder it was a difficult thing to come to terms with.  An individual with PKU cannot eat the things that you or I can.  It requires a very limited diet for life.  He will never eat anything with any trace of protein in it and will only be able to eat a measured amount of some fruits and vegetables.  It will be something he’ll need to think about every day of his life.

My biggest concern about this hasn’t been the work or the change of patterns for us, but making sure he doesn’t feel isolated and alone.  So much of our society is based around food.  Family reunions, celebrations, parties, holidays, etc.  They all typically have big meals as their center.

To my other two kids, Gage isn’t any different, he just requires special food.  Last night we made PKU friendly tortillas for him to eat as we ate ours.  It was an event the whole family enjoyed.  Gage isn’t alone.