Mitochondrial Disease; It Isn't All About Suffering

It is no secret that Mitochondrial Disease has brought a lot of trauma and suffering to our lives, the countless amounts of; hospital stays, ER visits, painful procedures, medications and side effects, interventions, adaptive equipment, medical supplies, doctor and therapy appointments, nursing visits, friends we have lost, the list goes on. 

What we don’t often talk about is the positivity that has resulted because of the hand we have been dealt that we cannot change.  The beautiful people who have entered our world that we would have never met otherwise.  The hand in hand comradery, the touch that says I know how you feel, without having to say a single word at all.  The close knit hearts, woven together, a stitch in time that began the moment the words were uttered “I have mitochondrial disease too.”

The strength and perseverance we must amount to in order to make it just one more day in this world.  The energy that it takes to lift your foot and take just one more step forward.  The close fellowship we have found with our Lord and Savior Jesus Christ who suffered most of all.    The power felt within when your knees hit the ground and you know He is the only one who can get you through to the other side.  The heavy weight lifting from your back, and the feeling of accomplishment when you take that deep breath and know you have made it through just one more trial. 

The closeness of a family who has learned to suffer well together, a family who has learned to pray together.  Though there is very little more heart wrenching then the cries of small children with tear streaked faces yelling “please don’t let her die,” there is also something extremely humbling about their heads bent in prayer, hands chained together praying over their sibling, knowing they can rely on God. 

This disease is cruel, it is destruction, it is heartache, but it is also the building blocks of positivity if you choose to find it.  Would I change it if I could? I would send it straight back to the maker, but the truth is I honestly believe for whatever reason we were meant to carry this burden we were also meant to find some peace with it.  I don’t know who we would be without it.  I do know we would be a family without physical suffering, but we might also be a family without the absolute blessing of the beauty that surrounds us because of this disease as well.