Flashback:
The date: July, 2010.
The city: Detroit
The event: The 12th International Fragile X Conference
The date: July, 2010.
The city: Detroit
The event: The 12th International Fragile X Conference
This conference was the first with the added element of Social Media - bringing Facebook friends together in person to meet IRL (in real life). We had the Fragile X Listserv for many years and friendships grew through it but Facebook put pictures and real life events that were more than just Fragile X questions out there for everyone to see. It made us more "real" and even more excited to meet the people we were watching the daily lives of.
There were people I could not wait to meet in person and people who couldn't wait to meet me. One of those people wanting to meet me - the one and only Cindi Rogers. While I was spending my time taking Melissa under my wing (ok, not letting her out of my sight and insisting she sit with me at every single event), Cindi was tracking me down and insistent on us taking the time to talk.
There were people I could not wait to meet in person and people who couldn't wait to meet me. One of those people wanting to meet me - the one and only Cindi Rogers. While I was spending my time taking Melissa under my wing (ok, not letting her out of my sight and insisting she sit with me at every single event), Cindi was tracking me down and insistent on us taking the time to talk.
I'm not going to lie, and I am not sure I've ever shared this with Cindi, but it kinda freaked me out a bit. I made it a point to go to her session and take some pictures for her but I also did a lot of ducking and hiding. I was just not sure about what to expect from her and her insistence only made me anxious.
Then, it happened. The event away at a museum (The Henry Ford Museum, I think, lots of cars, I think even a train or two - ok, I didn't pay a lot of attention to my surroundings, I was there for the people!) where Cindi literally cornered me and said for easily the 5th time at the conference to me "I'm Cindi Rogers... (like I didn't know who she was... she wasn't just "Cindi Rogers" she was THE Cindi Rogers) can we talk for a bit?" I didn't have much choice so I nervously began to walk the museum with her.
Within about 5 seconds I was kicking myself for not taking the time to spend with her sooner. We talked, as we had on Facebook, as though we had known each other since birth. We laughed, shared experiences, and didn't waste a minute of our time together as we walked around the museum. There was a mutual respect and admiration for the work we were each doing but more importantly a bond that only can be explained as a sisterhood.
Within about 5 seconds I was kicking myself for not taking the time to spend with her sooner. We talked, as we had on Facebook, as though we had known each other since birth. We laughed, shared experiences, and didn't waste a minute of our time together as we walked around the museum. There was a mutual respect and admiration for the work we were each doing but more importantly a bond that only can be explained as a sisterhood.
I may even be responsible for introducing M to her and we *may* have a small part in teaching her how to text, send pictures and use Facebook mobile... (Yes, it's ok to thank us)
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| Melissa teaching Cindi how to use her Blackberry |
In the 4 years since that first in person meeting, Cindi has become a part of my daily life. There are very, very few days when we don't chat. She is a friend, a sister, an adviser, and most special to me... a birch.
No matter the advice needed, she is there. From fragile x to fried fuses on my dryer to flooded basements she has an answer. And when she doesn't, she turns to YouTube... ;-) (*it's how she sent me the "how to" for fixing my dryer!).
In the past 4 years, Cindi, Chris, Jake and Joe have become family to me. A constant support in my sometimes shook up world. I can't imagine my life with out them.
I have been very honored to know how Cindi has spent the past several months - and the reason I am writing this very special post - my amazing friend has written her first book!!!!
The details below are the super exciting announcement of her book, how to buy it and why you should read it. While it's all extremely exciting and every bit true - the most honest reason you should buy and read this book is because you will be better for it. Do not waste another minute... go buy the book now and start reading it immediately!!!
The details below are the super exciting announcement of her book, how to buy it and why you should read it. While it's all extremely exciting and every bit true - the most honest reason you should buy and read this book is because you will be better for it. Do not waste another minute... go buy the book now and start reading it immediately!!!
Thank you, Cindi, for sharing your life, your family, your journey with us - for being one of the amazing people who make our world a better place. It is my honor to be your friend and to take this journey with you.
Oh, and when I grow up - I want to be just like you.
Oh, and when I grow up - I want to be just like you.
Without further ado, I am very proud and honored to be a part of the...
We are so excited to announce that Cindi Rogers first book, Becoming Mrs. Rogers is now available on Amazon.com. This book was a labor of love for Cindi, as well as her husband, Chris. The process has been a wonderful learning experience and going forward will continue to require more learning.
This book is a memoir of sorts about her life (and Chris') in dealing with the birth and subsequent diagnosis of fragile X syndrome for their two boys. The timeline travels from birth to present day and covers lots of different issues like school, behavior, therapies and day-to-day life. It will take you through some downs and eventually some ups, only to come out with moments of joy and hope. It was an emotional journey for me while writing it, for Chris while reading it, and we hope for you, too.
We also hope that you might consider reading it, and/or sharing it (forward this e-mail if you like) with others in your life that might benefit from such a story.
Buy here: http://tiny.cc/BecomingMrsRogers
Becoming Mrs. Rogers is the true and heart-felt story of one couple’s journey into acceptance following a devastating genetic diagnosis for both of their sons. Their story, its highs and lows entwined with its wisdom and compassion, has been a beacon of hope for thousands of families struggling with fragile X and other autism spectrum disorders.
Fragile X is a common and inherited cause of learning difficulties, affecting a child's entire world, including social and behavioral problems as well as cognition and speech. Rogers not only tells her story, but also gives advice for new parents, sharing facts about…
* the physical and behavioral characteristics of Fragile X
* the effects of Fragile X on learning, functioning and daily activities
* medication and therapy
* how fragile X affects the family.
Cindi Rogers and her husband, Chris, share the perspectives and tools they embraced in order to help their boys be as happy and independent as they can possibly be. It is a story of challenges, tears, joy and hope.
**A portion of the proceeds of this book are donated to the Rogers Neighborhood FX Family Fund which in turn offers scholarships to the NFXF International bi-yearly FX Conferences.**
Cindi Rogers
Cindi is the mother of two sons, ages 23 and 25, who are affected with fragile X syndrome and autism. Since receiving this diagnosis, Cindi has become a leader and symbol of hope within the fragile X community. Her positive attitude, creativity and defining can-do attitude has inspired families and professionals worldwide. Cindi and her family have traveled to conferences around the world to present her innovative strategies, helping families not only to live with fragile X, but to also thrive. It has become her personal mission to share techniques to help families generate ideas that they can implement in their own world, while helping their children with fragile X syndrome to live happier, more independent lives. Today, Cindi serves on the board of directors for Developmental FX in Denver, a non-profit that helps families just like hers learn to thrive in the face of fragile X syndrome. She lives and works with her husband and two sons in Littleton, Colorado, and together they love travelling the U.S. in their RV named Rocket.
Connect with Cindi:
Facebook-
Twitter- @MrsRogers2014
Rogers Neighborhood FX Family Fund--http://www.rogersneighborhoodfxfamilyfund.com
---On the blog find great website resources as well as bloggers to follow and enjoy!
Our boys are like many affected by fragile X syndrome; they don't like to have their picture taken! This photo turned out awesome, only after 52 "trials", the addition of sun glasses, and offering a sitting position (with a snack in the wings). Things are not always as they appear. We were so very proud to have this memory documented.
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