The X Factor After Little Becomes Big

Showing posts with label National Fragile X Foundation. Show all posts

8/12/2012

Ever since Josh was diagnosed with Fragile X Syndrome, people have told me that transitions will be difficult for him.

Oh, I'm aware alright. I'm aware that every day is a monumental challenge for my son who was born with Fragile X Syndrome and Autism.

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The X Factor After Little Becomes Big: I'm the mother of two, a 30 year old daughter and a 22 year old son who was born with Fragile X Syndrome and Autism. This blog is mostly about our life with Josh. He has changed so much about me, all of which are improvements to say the least. When Josh was born, I was an assistant vice president for an investment banking firm in its Washington DC office. Now I'm his primary care provider and living in Kansas. I've grieved for years. Now, I just enjoy life, my family, my friends and my passion for sewing. I discovered that passion when I moved to Kansas and became a stay at home Mom. Designing and sewing competitive dance costumes and other fun stuff became my outlet for emotional survival. I now sew only for Fragile X fundraisers. I've found myself of late becoming more involved in the Fragile X community through fundraising and advocacy and social networking. I was one of five founding members of the Kansas Fragile X Group, and I'm the Kansas contact for the FRAXA Research Foundation. My journey it seems is only just beginning. I hope my experiences will comfort or help someone along the way.

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