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Friday, September 24, 2010

Heartbreak and Reality

When we first heard the diagnosis of Probable Mitochondrial Disease, I did what every good mother did...I goggled it!  What I found was scary, dark and I felt helpless.  I began religiously following blogs of Mothers who had Mito Kids so I could see if Ethan looked like, acted like or seemed like a "Mito" Kid.  He did, he does, he will but for now according to Dr. Shoffner, our diagnosis is Possible Mito not Probable.  We are still awaiting 2 tests to come back on the rest of the muscle that was left frozen in Atlanta to confirm that it is not definitely Mito.  His labs just came back from our visit with Dr. Bodurtha and his lactic acid is still elevated but we don't know why...

I have fallen in love with some great Mito Mom's and their families and one such family is the The Knight Family.  They have two beautiful children, Lauren and Samuel and both have Mitochondrial Disease.  Samuel just turned 4 at the beginning of the month.  Last night, Samuel went to be with Jesus.  I read this update on facebook this morning as I was driving into work and I had to pull over to compose myself.

I trembled with fear, heartbreak and I felt so ashamed.  Ashamed because of the complaints I had made last night of how I felt so overwhelmed  with everything that I have to do with only 24 hours in a day.  The constant doctors appointments, work and so on and so on. 

Reality set in very quick and I became thankful to our Lord.  Thankful that he has a plan for us and for these sweet children.  It is not in our control, I am reminded of that daily when I look into the eyes of Ethan.  In times when the fear surrounds me, I take comfort in Jeremiah 29:11 - For I know the plans I have for you...

Will you pray with me today for this sweet family...

Rest in Peace Sweet Samuel....

1 comment:

Debbie said...

I was never following this family, but just feel sick about their loss.
We are all connected by this awful disease...my thoughts and prayers and tears are with them.