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Photos of Aegina

September 27, 2013

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Click here for Photos of Aegina. Enjoy!

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B. LewisOctober 17, 2013 at 11:24 AM
Excellent post!
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Monica Rose Care Fund

Consider donating to support Monica's medical needs

To My Daughter, Who Climbs Mountains and Fights Dragons

My Dear Monica, Today you turn two years old. For most children, it isn't very hard to get to this birthday, nor has the journey to this milestone been intensely stressful for them (although their parents may not have slept much). But you are different. We knew you would be different before you were born, when the doctors told us that you probably wouldn't be able to walk well on your own and that you most likely wouldn't be very intelligent. Obviously, they didn't realize whom they were talking about, because you, my dear, are a fierce little fighter, and while it took you longer to learn than most, you now walk quite well. When we learned that you have Rhombencephalosynapsis (or "That R-word"--as I called it before I could finally pronounce it), we were sad. We were sad because we thought life would be so much harder for you, because we were worried you wouldn't have very many birthdays, because we loved you to the moon and back already and didn...

When Pain Has No Name

The first time was in October. We thought the frantic crying was a temper tantrum until we looked at her feet. They were half vibrant red, half deep purple. The red parts where hot, the purple ice cold. We tried various strategies to cool the red parts and eventually, after much crying and screaming, Monica calmed down as her feet assumed a more normal color. At first we chalked it up to Monica’s rhombencephalosynapsis. Her condition is rare and causes all kinds of issues, so it made sense to blame this episode on her fused cerebellum. For a month, nothing else out of the ordinary happened. We plodded on with speech therapy and physical therapy. She was making good progress--just at the cusp of walking, and quickly adding more animal sounds to her repertoire. We forgot about that evening in October. As Thanksgiving approached, however, the episodes of painful swelling returned. They didn’t usually last long, but they were more and more frequent. Soon, her legs turned red an...

Good Friday and a Sword Through the Soul

"Miss Phillips, someone put a penis in my textbook." I stood stock still, knowing that my response could either diffuse the situation or launch the classroom into chaos. I walked quietly over to Chris's desk and asked softly, "What did you say?" "Someone put a penis in my textbook," he replied in a genial, mater-of-fact way, as though he might be speaking of a coin or a half-used pencil. I looked down at his book, and sure enough, someone had left a hand-drawn obscene bookmark in Chris's text. "I'll take that," I said, removing the image, folding it up, and discretely putting it in the trash. I then resumed the lesson, pretending I wasn't inwardly both amused at the antics that a high school teacher faces and relieved that Chris's discovery hadn't led to anything more than a brief interruption. This short episode with Chris took place about six years ago. I hadn't thought of it much until last month, when I...

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Photos of Aegina

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