Monday, August 27, 2012

"Dad, I'm confused"

So we are off to Atlanta again.  I've lost track how many times we have made this trip.   It's a 3 hour drive to the airport and a 4 hour flight.  This trip is for Spencer.  The 3 other kids are home with Grandma and Grandpa Warnick.  Last night we had a pharmacology session with my in-laws as we explained the medications and supplements that are other children need to take.

I asked Spencer the other day how he was doing with the news of his confirmed diagnosis of Mitochondrial Disease.  He said:  "dad, I'm confused".  What do you say to that answer?

I wonder if these are his thoughts:   I'm headed back to Atlanta to hear what my future holds.  I'm going back to hear I have a disease that has no cure and no effective treatments.  I'm going back to Atlanta to learn more about this incurable disease--is it going to be progressive and degenerative?  How long will I live?   Do I have a form of mitochondrial disease that is mild and only cause bad headaches?   Essentially, I am headed for years of uncertainty, a lifetime of taking medications, and a lifetime of continuous doctor's appointments.

As a parent, I feel so powerless!  I wish I could take this from him and my other kids.  The emotional pain he is experiencing must be terrible.  It was so different with Sydney and Seth when they were diagnosed.  Sydney has poor insight and Seth's was congenital.  Spencer is so intelligent and athletic. 

As he transitions to his new life, Is there any place, anything that can provide solace during such a time of turmoil and uncertainty?  The only thing I know of is to look Heavenward.  As I've mentioned in prior postings, I have tried other sources of peace which are not true peace.  The issue I'm having at this time is I've NEVER dealt with anything like this ever before.  I have never been challenged so deeply and to the heart and soul of my existence.

Grove of Sequoia trees Yosemite National Park

Last Friday, I woke up around 11 and noticed the light was on in Spencer's room.  I went in to see what was going on, and found him sitting in bed reading his scriptures.  I gave him a goodnight hug, walked back to my room with tears in my eyes.  "...and a child shall lead them...".  I'm no scriptorian, but I know there is a scripture that says something like that.  He is an example to me and anyone reading this blog on how to handle adversity.  I feel so blessed to have a  son like him.

As 3 out of 4 of my children have been diagnosed with Mitochondrial Disease, my focus in life has changed dramatically over the past several months from passions in cycling and other forms of fitness to raising awareness and helping find a cure for Mitochondrial Disease.

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