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Who is that crazy lady?
Someone might see me at times and think, “Just who is that crazy lady?” It might be when I’m singing the Barney song and adding my own little dance or when I’m pulling the imaginary horn in a chair choo-choo on the hospital stage. I’m the crazy lady who’s learning to live it like I…
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Omniscient Grace
Sometimes we learn amazing lessons about God from our children. Unconditional love. Instant forgiveness. Pure joy. But sometimes God uses our own words to our children to teach us. We have a baby monitor to hear our kids at night. All three of our boys share a room and it lets us hear the fights and…
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Who am I? I am…
Who am I? I’ve always had many answers for that question. At different points in my life and in different conversations, I would have said: I am … a perfectionist. I am … a lawyer. I am … an organized person. I am … a runner. I am … a cleaner. I am … an…
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Getting nothing done?
I often lie in bed at night and either think to myself or say aloud to my husband “I got absolutely nothing done today.” It is usually because something unexpected happened – a snow day, one of the kids is sick, several phone calls from case workers or insurance problems. I have a list. I…
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I’ll take Blessed, with a side of MPS
I often say that I wouldn’t wish MPS on anyone else. The heartache, the initial despair, the sorrow that somehow something you did brought this horror on your family, the gut wrenching sobbing that makes you throw up before you ever get a normal breath back. No. Of course I wouldn’t wish that on anyone.…
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A Life, Distracted
We grow up. We go to college (or not). We meet a wonderful person. We get married. We have children. We work. We play. We sleep (or not so much). We watch TV. We play video games. We Facebook and tweet. We talk incessantly about minute, politics, the market, the weather. We clean (or not).…
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Is there a downside?
Since Case was diagnosed, I felt compelled to find the bright side. That is not to say that I was happy and optimistic all the time – it is of course a process … to process. But, if you live in a cloud of “what ifs” and gloomy prognoses, there is so little left of…
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Praying for a ram
On April 6, 2009, I realized Case almost surely had Hunter Syndrome. No doctor had confirmed it, but we knew. There is just so little that can hold you together at a time like that. Sometimes, I felt like I was falling apart. I felt like everyone who passed me in the street, the grocery…
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and the Birth of Another…
Sometimes it takes death to be reborn. Sadly, it took the death-expecting disease of Hunter Syndrome for my walk with Christ to be reborn. Let me back up. I became a Christian at a young age. Frankly, I don’t even remember all the details, but I’ve let go of the necessity for that. What matters…
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Death of a Dream…
Death of a Dream. When we first met with the geneticist at Vanderbilt, he did admit that he thought Case had a form of MPS, but he wasn’t sure what type. They had to get blood and urine samples to send off for genetic testing. Genetic testing that can take months. I assured him that…
