Toys, Blind Kids and Kathie Lee
“Did I hear that correctly?” I thought. I turned the television volume up and paid attention. “So, these toys would be appropriate for blind children?” I did hear correctly. Astonished, […]
Treading the Rare Disease Waters
Imagine yourself treading ocean water. Between the waves, you see a glimpse of land. Water rises above your ears and face and rhythmically lowers to your chest. There is no […]
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When The Lights Go Out
The Weather Channel buzzed about it for days. Impending severe weather may produce situations where power may be lost. It doesn’t matter where you live; it happens to […]
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Welcome to the World, Little One
“Mr. and Mrs. Burke, I am so sorry. Your baby has hydrocephalus.” My heart sank. I knew it wasn’t good. Just a few years prior, I babysat a little boy […]
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The Day My Mom Guilt Disappeared
“Do siblings of children with special needs turn out okay?” I’ve asked myself that question many times in the last 28 years. Certainly, in our family, there is enough love […]
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It’s Warburg Micro Syndrome, Now What?
You’ve read the letter over and over. Somehow, the words don’t sink in; they just sit there in the air dangling in front of you. Where do you go from […]
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Does Your Baby Have Warburg Micro Syndrome?
Wondering whether your baby has Micro Syndrome? Statistically speaking, they probably do not. Warburg Micro Syndrome is very, very rare. There are less than 200 known cases since the first […]
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Dear New Mom of a Child with Special Needs
Dear new mom, Hi! Nice to meet you. Welcome to the club! I’ve been in this club for almost 30 years, so any thoughts or feelings you may have, I […]
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You’ll Find Us In Switzerland!
“She’s going to discover the cure!” or “He’ll be a doctor because of MaryEllen and Kevin.” I always imagined that our healthy kids would have such a connection to their […]
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I Noticed
Dear Kevin, 11,066 days. That’s how long you’ve been a dad. Daily, you go above and beyond and show our children, by just being you, how to do the right […]
