"Life's not about waiting for the storm to pass..It's about learning to dance in the rain."

This quote is by far my favorite. It mirrors my role as a mom living day to day with a child born with very rare and life threatening congenital heart disease. As I look back over the last 19 years of my son's life, there were so many times when I wanted to bury my head in the sand, let life pass me by and hope to God that I would wake up from this nightmare without having to deal with the fear of the unknown. BUT.. I didn't have the liberty to do that because, had I, my son would not be here today.

I had to take a stand for my son both educationally and medically. I had to dance in the rain.. If I had let the storm pass, when the clouds cleared and the rain stopped, I would probably be mourning the loss of my son's education and the loss of his life.

Had I not outfitted myself in raincoat and umbrella, when the school system told me "Why worry about education?", I would have an uneducated 19 year old. Instead, I have an honor graduate! Oh boy! The dancing my heart did at his graduation!

Had I not grabbed the warmest coat, gloves and hat when the doctor told me "You realize a heart transplant is simply trading one life threatening illness for another", I wouldn't have seen him graduate. He wouldn't be alive to graduate. Instead, I replied, "What other choice is there?" To which she replied "There is none." Terrified of what was to come, I heard myself say, "Death is not an option."

Two heart transplants later, I still can't put these tired, weary feet  up and rest. I must still dance everyday. Most assuredly, the rhythm and the songs change almost daily. But I change my steps with the rhythm of the music. Sometimes, it's a slow moving waltz. Other times, it's a dance filled with the passion and the fierceness of a paso doble, with me as the bullfighter and the rest of the world and my son's disability as the bull. As I wave my cape to tame the bull, I fear the unknown but realize, the moment I throw my cape to the wind, is the moment that blood will surely be spilled.

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