From Better to Worse and Then They Will Part
Love and Laughter.. . We'll Live Happy Ever After

The Soul of A Special Needs Mom

It's late, so the house is quiet and the lights are low. My box of kleenex is now empty. I hit the remote to turn off the tv and head first to O's room . And instead of quieting my craving to climb in bed and gather my first born's body in my arms, I instead bend down brushing my lips over the tip of her nose , and then close to her ear whispering.. promises. I love you's. More promises. I move next to Zoe's room, her cheeks are flushed yet she sleeps peacefully. First I gently kiss her forehead, and then each cheek. Finally her lips.There are no words for her. Just questions, questions I keep silently repeating. Am I doing my best? Making the right choices? Making memories? Teaching my daughters enough? Loving and Laughing enough? And the loudest question that is buried the deepest in my mothers soul -now is pounding in my head.." Will I have any regrets?"

I had just finished watching the movie Extraordinary Measures. Through mostly tear filled eyes. A lot of the drama for me was the imagery , the kids in power wheelchairs, the machinery, the illness, the fear, the desperation that was ever present. The emotional and open soul of a special needs mom.

The remarkable true story details a father's fight, and race against time, to not just find a cure, but to make the medicine that will save his children's life. Not a new story- and I had already read both books, mostly because I stumbled on them in my local library and I happen to read a lot. First I read " The Cure" written by Pulitzer Prize winning journalist Geeta Anand , the non fiction life account on which the screenplay is based- and then I read John Crowley's personal perspective " Chasing Miracles" .

Sleepy, yet unable to surrender, I lay in bed  last night, thankful for the comforting warmth of my husband beside me, thinking... " Am I fighting hard enough? "

I fought hard for the answers and the eventual diagnosis. I pushed and pushed-first fighting for Zoe and then for O. But with a metabolic disease, there is a certain amount you have to accept. With their illness, it is the mitochondria that is damaged all throughout their body. It is on a cellular level that cannot be re-engineered, at least.. not yet.

 It is morning now, the next day- and still I am moved and distracted by the difficult answers to all of these questions. I know am trying my best to make the most of everyday with my daughters. I am their best advocate. I support the cause and believe in the future of medicine and scientific advancement- but what is most important to me now is living like a typical family, I know this is best for the health of my kids today - even though fighting the hardest fight might be best for their future of tomorrows.

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