Brookie the Brave; Reflections on Motherhood

Wednesday, August 6, 2014

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Aicardi-what?

When Brookie was 5 weeks old she was diagnosed with a life threatening, non curable disease called Aicardi Syndrome. It was a hard time in our lives but we have accepted it, embraced it, and are loving the life lessons we learn with her along the way. What is Aicardi Syndrome? In short, Aicardi syndrome is a rare genetic neurological syndrome characterized by the partial or complete absence of a key structure in the brain called the corpus callosum, the presence of retinal abnormalities, seizures, global developmental delays, cerebral palsy and scoliosis. While all of this sounds super scary, Brookie is a thriving little girl despite her disabilities. Always a baby, she will be very delayed developmentally, but spiritually she is a strong shining light. Brookie has taught us to remember what is truly important and to look for the silver lining in the clouds on dark days. Though are lives were changed forever, it has been for the best. We love our little sunshine!