Top Four Posts of 2018

Top Four Posts of 2018

I started this blog in May of 2018, about four months after Taylor was diagnosed with PURA Syndrome, a rare genetic condition affecting approximately 200 individuals worldwide. I wasn’t really sure what I wanted to do with it at the time, but I knew I wanted a quick way to update the many people who are very interested in Taylor’s life, and also wanted to bring awareness to my daughter’s condition and other rare diseases.

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Loss of a Life Imagined: Grief and Chronic Sorrow

Loss of a Life Imagined: Grief and Chronic Sorrow

I like to put a positive spin on things….look at the bright side….make lemonade out of lemons.  However, there are some days when parenting a child with special needs is really tough.  Slow progress can be discouraging.  The inability to fully communicate with a child can be frustrating and feel lonely.  And, although I try to avoid it like the plague, I can’t help but compare my child to all those typically developing children running around in the world. 

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