Monthly Archives: October 2014

A Year in Pictures

Today ends Rett Syndrome Awareness Month, and a year since Katie got accepted into the NNZ trial. During this month, we (parents) post a lot about what Rett syndrome takes away, how difficult it is, how much it seems to … Continue reading

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Gone are the Days of Love and Laughter

Yesterday, I read that a child of twelve had lost her fight with Rett Syndrome. That’s the age I was told Katelin would die by. Just twelve. In the time that I’ve been connected to Rett Syndrome sites, I’ve heard, … Continue reading

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Life, Liberty and the Pursuit of Happiness

Speaking as an American, only, and only me, the words from the Declaration of Independence have always burned in me. “We hold these truths to be sacred & undeniable; that all men are created equal & independent, that from that equal … Continue reading

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But For a Simple Twist of Fate

By default, having a special needs child, BEING a special needs child, makes you immediately different. For some, the differences are very obvious-a cleft palate, facial deformities, dwarfism, Down syndrome, wheelchairs-these things jump out. Most people think these things are … Continue reading

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A Breath of Fresh Air

Katie loves the wind, she gets that from me. 🙂 We love to go to the boardwalk at Grey’s Beach and feel the warm, salty breeze on our faces. Sometimes, when we are walking and the wind sweeps by, soaked … Continue reading

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One year later….

One year ago today, I found out Katelin had been approved for the NNZ study. One whole year’s gone by in a blink. As I look back on this day through the advantage of Time, I was right to be … Continue reading

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October Siblings

One of the overlooked impacts of Rett Syndrome is that on siblings. In some ways, it’s a good impact. Our other children are usually empathetic to disabled in public, stick up for their sisters and brothers in front of others. … Continue reading

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The Story of Fox

I never heard of FoxG1 until last year when a Rett doctor asked me if Katelin had it because she had Fox.  He said they had their own club. The FoxG1 Club and of course the “fox” was something of … Continue reading

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Explorers in the World (of Rett Syndrome)

Today being Columbus Day in America (and please, let’s not get political here ; ) ) got me thinking about explorers. So many brave men and women who left their countries to find what was beyond the known. Can you … Continue reading

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The Eyes Have It!

Ask any parent of a Rett child and they’ll tell you…”I can tell she understands, I can see it in her eyes.” Katie’s eyes are such a beautiful blue. They sparkle so. But, I don’t get to just admire them, … Continue reading

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