Dear Mitochondrial Disease, My Son’s Strength Is More Than Physical
Dear mitochondrial disease,
You’ve taken more from me than you will ever know, and one day you will take my reason for living.
The day my son was born was the best day I’ve ever experienced. Then, one short year later my world came crashing down with two words — “mitochondrial disease.” You took the hopes and dreams I had for the future.
My little boy will never know what it’s like to live an ordinary, healthy life because of you. I never imagined I would wish my boy to be ordinary. You even keep me from giving my little boy a baby brother or sister for fear of you causing them the pain you’ve put my precious angel through.
I never thought I would feel lucky to have doctors and nurses tell me how healthy my Lucius is “for being a ‘mito’ baby.” People don’t realize what it’s like when they’re on the outside looking in — ignorance has caused me to push many people from my life.
Just so I can understand you, I read article after article, blogs and people’s stories, so I could find out what you’re doing to my son. Because he can’t tell me. There are a lot of things you’ve kept from him like walking and talking and climbing around. You take his coordination and drain his energy every day.
You leave him physically weak, but his strength isn’t just physical.
With everything you have taken from us, he’s given so much more. Every day I have his beautiful smile in my life is a gift. I know one day you will take him, but I will hold him close and adore every moment of joy he blesses me with. He’s taught me about strength when you make me feel weak. Every time you knock him down he gets right back up and smiles to your face; you put obstacles in his way, and with time he conquers every one.
Lucius just turned 2, and with every milestone he meets, hope and excitement fill my heart. However, I must be cautious about my optimism. When you take hold, you act fast; the slightest illness means we end up in the emergency room or with a hospital stay. I’ve found support in “mito” communities and much needed advice there when his doctor just doesn’t understand how to deal with you.
My son’s named Lucius, which is Latin for light. It fits because my life is brighter since he came into it. The day we defeat you will shine the brightest of all.