Friday, April 22, 2011

How It All Started

Have you ever been on an extensive, ambiguous, indeterminate excursion with no map or GPS, car trouble, flight cancelations, been lost many times along the way, been given wrong directions, and no clear direction as to where your final destination is and how long it will take to get you there?  No one takes a trip like this unless you are pathos.

Family photo before the uninvited, unwanted guest called mitochondrial disease entered our world

So, I have decided to enter the blogging world to chronicle my journey as a father of two children with chronic incurable diseases.  Somehow, writing about this journey makes it a little easier.  I have found that sharing your pain, your deepest fears, your anxiety, your hope, your hopelessness, your sorrow, and your happy moments with others is therapeutic, even though it's difficult to disclose.

I am a father of 4 wonderul children, 2 boys and 2 girls ages 16 to 4.  My oldest daughter and my youngest son have mitochondrial disease and cerebral folate deficiency. 

It all started back in December of 2008 when my youngest boy Seth developed rapid eye movements in his right eye.  We took him to one doctor who referred us to another who ordered an MRI to rule out a tumor on the optic nerve.  When you as a parent are told that there is a possibility of a tumor in your child's brain, all sorts of feelings go through your own brain.  Now it's April 22, 2011 and sometimes I wish it could have been something like a tumor on his brain.  You see, cancer is common and well funded and thus well studied with treatment options available.  Mitochondrial disease is less common and not well funded and thus has no good treatment options.

So the journey began in 2008 and still continues.  This journey has taken us physically and electronically to several specialist of the specialists in Amsterdam, Minnesota, San Diego, Phoenix, Atlanta, Indianapolis, and many of the large teaching hospitals around the world.

When a specialist of the specialists says:  "I have no idea what is wrong with your son, I have never seen this before", you feel helpless.  When a specialist of the specialists says: "I don't have a prognosis for your son", you are terrified that today might be his last day.  Somehow, you muster up the courage to continue.  That is what our family has done for the past two years is continue to live despite the uncertainty and fear. 

Grand Tetons.  Photo taken on family vacation 2010

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