Mitochondrial Awareness Week

This week is International Mitochondrial Awareness Week.  If you are like me, you've never even heard of the disease.  You might remember hearing the word 'mitochondria' from biology class back in the day but maybe not...I didn't.  When doctors started playing with my kids in the mito arena, I started feeling a little uneasy but at the same time, knew they would probably find some problems and sure enough they did.

Mitochondrial problems for us are secondary to bone marrow failure; at least for now.  We started the mito cocktail just a couple of months ago but haven't seen huge improvements yet.  Our doctor said it could take awhile.  I am still learning about the process of this disease and have only dipped my toes in the deep waters of the mito world.  Part of me just doesn't want to know but the other part wants to know all I can. 

A couple of months ago, I joined an internet support group for mitochondrial disease and lurked in the shadows as I read about other families stuck in this mito mess.  Truth be told, I completely expected their experiences to be totally different from ours and I would breathe a big sigh of relief and say to myself, "they can't possibly have this disease, we are nothing like them."  Well, turns out we are very similar to them.  My kids are not nearly as sick as some kids out there fighting mito disease but we have our days. That discovery was both discouraging and comforting.  I dared to post a message, our story and again was surprised when I was met with such support and encouragement and some of the feelings I have kept hidden and isolated were validated and I am not as crazy as I feel sometimes. 

So, as you go about your week, whether you donate to the cause or not, just remember how lucky you are to be able to get up in the morning, knowing you can physically get up in the morning.  Take a moment to feel the energy you have whether you want to use it or not, it's there.  Appreciate your body, all that it does everyday that brings a richness and quality to life.  Remember to live a little more, exhaust each moment you have, give thanks for everything- the good, the bad and the ugly. Keep your family close and don't forget that everything else in the world pales in comparison to the love of a family. 

Plan a strong week, make a great week!  If you want to understand more about mito disease, go here.  Mitochondrial disease may never affect you or your own family but understanding what others go through helps us be all around better people, more loving, more helpful.  


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