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 […]
Author: Lori
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 […]
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How Did We End Up Here?
The words hit me like a well placed punch in the stomach. I had to catch my breath before I could go on. “We will also discuss various end of […]
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Some People Call Them Nurses, I Call Them Family
Since MaryEllen and Kevin were young, they have required a great deal of care to help maintain their good health. For us, good health means not being hospitalized. Even though […]
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Seven Ways to Turn That Frown Upside Down
Let’s face it. Special needs parenting is not for wimps. On any given day, we can be puked on, spit on, and yelled at by our loving and adorable children. […]
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Bad Santa, Good Santa
We spend MaryEllen’s December birthdays at the local mall, shopping, her most favorite thing to do. She loves the feeling of all the new outfits draped over her and […]
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Just Say Hi!
Going out in public with MaryEllen and Kevin should be an olympic sport! I know I would get the gold medal. Just like a true dedicated sports professional, after years […]
