What a Year

I am not quite sure what marks the start and end of this "year of chaos."  We are approaching the 12 month mark for when I started this blog but of course the chaos started on 5/31/11 when Alan lost his job at his beloved CC.  Or, maybe it started on 8/26/11 when he left home for his adventure, leaving his family behind and putting his own safety at risk.  Maybe it goes back to August of 2007 when we found out our oldest son Ryan, then 16, was using drugs, not his current drug of choice (heroin), but drugs none the less or was it when he was arrested exactly one year ago yesterday.  Maybe the real chaos didn't start until last November when my suspicion was confirmed by Dr. Smith that my daughter Megan had muscular dystrophy.  It doesn't really make sense to mark the end of this "saga" until at least one of these events is resolved.  I suspect that will be my dear Alan's return in early October, I am hopeful this will be the start of new year for us, it is not clear yet if it will be defined by chaos or perhaps change and hope.

Many people have asked me how I have coped with all this, how I have made it through this year so well.  Honestly, talking about it has been my coping mechanism.  I have very few close friends and my best friend has been half way across the world in a war zone.  I believe that we as human's are really stronger when we have to face challenges.  Probably the hardest thing for me has been the loss of control, or at least the perception of control I thought I had.  I have been told that I like to control things and that I don't deal well with change.  Well guess what, I was hit hard with one change after the other this past year and confronted with situations in which I had absolutely no control and a "year" later I can report that I did deal with it all and for that I am very proud of myself.

So, where are we a "year" later?  Alan has worked an entire year at an exhausting pace of 60-72 hours per week.  He was promoted twice, assuming the role of Network lead at Bagram.  He filled in as acting site manager for all of his company for the month of June and at one point he was asked to apply to be the deputy country manager (he declined since another year would have been required).  He achieved his goal of earning his CCNP (Cisco Certified Network Professional) even while working non-stop.  He has been far away from his family which in many ways, has been in crisis mode, something I know has been very hard for him.  He lived his first 2 months in Afghanistan in a 100 person tent with 18 inches between the bunks.  He has had mortar and rockets exploding around, one exploded in a storage container 100 feet from his door and one landed in the tent next door but didn't explode.  He is my hero and I am so blessed to have this man as my husband of 24 years and to be welcoming him home in a few weeks.

My beautiful boy Ryan is back at the Salvation Army residential program, perhaps until late February.  No news I hope, means good news?  I have learned to mostly let this go as I can't control it, never could, it just took me awhile to figure this out.  In the end, he is a bright kid and I hope and pray with all my heart that he figures this out.  He is living proof that drugs ruin lives and for all the young people faced with these choices, you can't trade your future and your life for a "high" that is followed by the worst low you can imagine.  You chase this high that eventually becomes unattainable and then you spend your days just trying to get enough to feel "normal."  It is a black hole that sucks you in, please just say no to drugs, it is critically important for you and for those that love you.

Brendan is carving his own path now.  What a wonderful young man he has become.  He completed his first year of college and just recently returned as a sophomore.  He is an RA this year and learning leadership and responsibility and will carry him further in life.  He still comes home every few weeks to do his laundry and to see if I want to take him out to dinner... I always do!

Evan continues to shine.  He is uniquely self assured and responsible.  I love his spirit and drive, he really gives 110% in everything he does.  He will be 16 next month and getting his drivers license,  he learned to drive this past year under my guidance and I am sure he will be glad to drive without me in the seat next to him telling him what not to do, just me trying to control what I can't control.  He made the Varsity soccer team at Air Academy, in part for his work ethic and effort every time he steps on the field.  We are told he likely has the same muscular dystrophy as his sister, but to watch him in action, you would never think he has a disease that causes a deficiency in energy production. This next year will hopefully bring more answers.

My darling daughter Megan, she has grown from a little girl to a teenager this past year, a young lady.  She turns 13 in one month.  She is thoughtful and she works hard.  I think she is more like her dad than her mom, more relaxed about life, easily making friends and impressing the adults who know her.  This will server her well.  Prognosis for her with her mitochondrial myopathy is not clear.  The statistics are not good, but I continue to be positive because the more I learn about this disease, the more I realize that what was known about this disease last year, 5 years ago, 10 years ago and beyond had changed dramatically.

When it was first discovered that the mitochondria and the unique mitochondrial genome (different from our nuclear DNA) were able to cause disease, some devastating diseases, mostly of childhood were linked to the mitochondrial genome in the late 1980's.  These were diseases such as MELAS, Leighs, LHON, MINGE, CPEO, Alpers, and Pearson's syndrome and many others. These were all devastating diseases of childhood and one statistic is that 80% of children diagnosed with mito will die before they leave their teens.  It is also estimated that 1 in 5000 will develop a mitochondrial disease.  20 years ago, the nuclear genome started to be studied and mapped and in the last 10 years, over 1000 nuclear genes have been identified as making proteins that are used by the mitochondria.  You see, mitochondria exist by the hundred's or thousands within each cell of our body (except red blood cells).  Each mitochondria has 2 to 10 copies of the mitochondrial dna.  Disease can be caused by mutations in the mtDNA, the nuclear DNA, or both.  In some cases, a nulcear defect in a gene will cause a problem with mitochondrial duplication resulting in depletion syndromes, sort of like missing one of the batteries in a flashlight.  Without mitochondria which make 90% of the energy our cells needs, cells will die.  Since I can't control any of this disease, I am learning all I can about it and making sure I am prepared to advocate for my family if I need to.

Earlier this year, I wrote about possibly having the same thing as Megan.  This is when we thought she had FSHD.  This is actually still possible since FSHD was recently described in a study published in July as being associated with mitochondrial dysfunction and her phenotype is so much like that of FSHD.   I have been seeking for myself an explanation for many seemingly unrelated issues for the last 8 to 10 years.  I found an email I wrote to a friend back in 2004 describing odd feelings I was having such as tingling in my fingers and toes, feelings of heavy arms and mostly, just fatigue.  The Neuropathy and odd feelings I have since learned are called autonomic dysfunction, very common in mitochondrial dysfunction.  I have had 2 MRI's which found white matter lesions, an EEG provoked seizures in my temporal lobes.  Findings the Neurologist I saw at the time said were non-specific and could not be associated with a specific diagnosis, he was actually quite rude about it.  The rhuematologist I have a history of having migraines with stroke-like symptoms such as aphasia or hemiplegia which is a loss of muscle control on one side.  As an example, while driving a stick shift, I suddenly lost the ability to shift the gears with my arm, in fact, I couldn't even raise my arm to the gear shift.  I had to reach over with my left hand and get it in neutral to pull over.  The migraines started at age 11 but were not diagnosed until I was in college.  When I was Megan's age, I used to worry I had a brain tumor because doctors couldn't figure out my weird headaches, numbness and visual aura's.  It turns out, mitochondrial disease can affect the central nervous system and the brain has a very high demand for energy.