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What I Wish I Could Tell My Younger Self About Parenting a Child With Rare Disease

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As a newlywed in 2006 my life was about to change in ways I could never even begin to imagine. I married my childhood sweetheart in October 2005, and we soon were delighted to find out I was pregnant in March 2006.

Little did we know that those two blue lines were the start of an unimaginable journey. Nine months later (39 weeks to be exact) a little baby boy came into the world.

He was trouble from the start! He was breech, so he made his grand entrance by c-section, or as I like to prefer via “the sunroof” at 12:13pm to the dulcet tones of Neil Diamond’s “Sweet Caroline.” That’s what was playing in the operating theatre — not my choice, I’d just like to add!

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