I live in Kansas, but 4 or 5 years ago, I decided to fly to Denver and attend a conference being hosted by the Colorado Fragile X Group – mostly to see how they did things and to scout out speakers for our newly formed Kansas Fragile X Group. Shortly after registering online, I received a message from Cindi Rogers. At that point I was her facebook friend but we had never met in person. In her message, she invited me to stay in her home the night before the conference! Well if you are a Fragile X carrier, or know and love someone who is, then you know how crippling our social anxiety can be. Let me tell you, I was anxious from the moment she asked me until the moment she wrapped her arms around me and hugged me at the airport. From that point forward, we laughed (especially when she ran out of gas!) and I LOVED watching firsthand her and her husband, Chris, effortlessly facilitate the life they have put in place for their sons, Jake and Joe.
I learned so much from her and her family during that 24 hour period -- probably more than I have learned from pretty much anyone during my 20 years of raising a son with Fragile X Syndrome. She's that good!.....well and I really am a firsthand, visual learner (I was a little disappointed after seeing a visual in the boy's bathroom that there wasn't one in the guest shower!). Chatting with Cindi, and now reading her book, is like having a human link to a warm and fuzzy fantasy “library of Fragile X.” She’ll be the first to tell you that she doesn’t have all the answers, but she’s willing to share her journey in the hope that it helps. Believe me…..it helps!
The National Fragile X Foundation, now in California, was formerly located in Denver. So through the years the Rogers family has had
unparalleled access to rock star professionals in our world…..just to name a
few – Drs. Randi and Paul Haggerman, Dr. Marcia Braden, Dr. Karen Riley, and Mouse and Tracey of Developmentally FX (SLP
and OT devoted to our children with Fragile X Syndrome). Cindi embraced that access and used what she
learned, as well as her motherly instincts, to create a beautiful life for her
family in the face of undeniable challenges.
I will never forget the evening I spent in
their home, and the well-synchronized “Welcome to our hood” that I
experienced. I’m hoping you will
experience it as well through her words in Becoming Mrs. Rogers. I wish I had a photo of the smile on my face when I woke up in the guest room to the sound of Joe jumping up and down on the floor above me (for sensory stimulation). It's difficult to put into words the feeling of existing "different" than everyone else in your neighborhood and then to find yourself in a neighborhood that feels "normal."
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| Cindi and I laughing on the side of the road after running out of gas on the way from the airport to her house. I was relieved to discover she is human! Although part of me wonders if she planned it, WITH VISUALS! |
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| The speakers I was scouting! ....we had our heart set on bringing Cindi, Mouse and Tracey to Kansas! And we did! I remember panicking when I asked Cindi what her fee would be. She said a number but she didn't quantify it, and my brain jumped straight to thousands of dollars. I had no idea how we would ever raise enough to make it happen. Alas, my brain took the wrong path and we were able to make it happen! |
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| I met Rocket during my visit! I thought it was cool then.... You should see the newer version! You'll read all about this remarkable comfort zone in her book! |
