Author Cindi Rogers

Cindi is the mother of 2 boys affected with fragile X syndrome and Autism, ages 23 and 25. In the mid- 90’s Cindi served as Family Liaison for the Fragile X Treatment and Research Center at Children’s Hospital in Denver, CO. She currently serves on the Board of Directors for Developmental FX in Denver, CO. She has presented her innovative strategies to families all over the world and especially in the U.S. It is her personal mission to share these strategies in hopes of generating ideas that families can implement in their own lives, while living with Fragile X Syndrome. She and her husband live and run a business in Littleton, CO. The four of them enjoy travelling the U.S. in their RV named “Rocket”.

Thursday, July 3, 2014

The Art of Barfing:  The beginning of a new journey

 My plight to write a book began many years ago, but not in earnest.  I made notes, but never kept a journal like my friend, Judy, suggested.   I never had much time either for keeping good notes. But as fate would have it, in 2013, something pulled me toward achieving my goal of writing that book.  Let me explain.

I became a member of the “Bad Girls” book club about 6 years ago, and I love spending time with my girlfriends once a month, chatting and talking about books… and “maybe” sipping a bit of wine.  One of the members, Julie, belongs to a local chapter of P.E.O. (Philanthropic Educational Organization).  Each fall, the PEO holds their annual fundraising event called “Books and Brunch”, which I enjoy attending.  This event features authors who give a brief talk about their book and answer questions from the large, sold-out audience. 

In 2013 it was no different, although, there was one Author by the name of Polly Letofsky that especially peaked my interest.  Polly was the Author of a book called, “3MPH: The Adventure of One Woman’s Walk Around the World” *.  As she spoke, I listened, I observed and I learned.  She was a very gregarious speaker!  I loved her!  She faced many obstacles in her journey to achieve the goal of walking around the entire world, and she came out ok!  What an achievement!  She faced many challenges as she walked with the goal of raising global awareness for breast cancer and fashioned an amazing story about her achievement.  Her story was such an amazing feat (pun intended) and was featured in various media outlets around the world.  I knew I had to chat with her when given the chance afterward.

I approached Polly’s table where she was chatting and signing books for others.  I lined up and it was finally my turn.  I explained that I really enjoyed her talk and greatly admired her for her determination to reach such a goal of walking around the entire world!  Then I admitted that I, too, was very interested in writing a book about my life and my experience with my two boys.  She enthusiastically raised her hands (the way she does) and told me that her “regular job” was now to help guide self-publishing Authors through the process of writing their own book.  Wow, I thought.  It was meant to be!  We agreed to meet a few weeks later and talk about what I needed to do and where to begin.

At that meeting in a local Starbuck’s, Polly talked and I listened once again.  She explained what it meant to self-publish a book and what the costs would be for each step (it costs money to write a book?).  She also gave me estimates on timing and cost.  I told her what my ideas were and she encouraged me to just write down everything I had ever thought about.  I explained what fragile X was and, as with most people, she had never heard of it.  I gave her a top level explanation, but planned to outline it further in my words that she would eventually read.

This was all so new to me, but it also seemed very exciting!  Then, she said the one thing I will never forget.  She told me to, “Go home and start barfing out your book.  Don’t think hard, don’t punctuate, don’t worry about spelling… just barf.” 

As I drove home from that first meeting, my mind was in a complete rush!  Never in my life had I thought that it would actually be possible to write a book!  I never knew what the steps were!  I never knew that it actually cost money to write a book!  But each piece of information gave me hope and fed me, while for 6 months, I barfed and barfed. 

I am sure there were times when Chris, my husband, wondered if I would ever come back to him.  I was so engrossed in barfing that I had a hard time focusing on other things.  Oh, of course, I did the day-to-day things that were memorized, but anything that required some level of creativity was gone. I was dug in.  I knew I had to see this book through. 

Once I had typed over 100,000 words, I paid the fee to hire Polly as my own consultant, and the process began.  The first basic step was for Polly to help me generate an ISBN number, get my business name set up for the publishing company and apply to the Library of Congress for a number, all for a small fee.  I also decided to hire a final year Creative Writing student named Chris, to help me organize the words into some kind of format that was cohesive.  This was a long process.  I started out with one flow and together, we ended up completely changing it into another.  We finally decided that the draft was as far as we could take it. 

Once that was done Polly sliced my manuscript (yep, that’s what they call those 100,000 words!) into a format where three different editors could give me an estimate on what it would cost to have my work professionally edited.  Once everyone had given their input and timing was estimated, we decided on one.  His name was James.  We arranged to meet, again, at the ever-popular Starbuck’s.  At that first meeting, James had already read or at least skimmed my manuscript.  He put forth his ideas and interpretations of my work.  He had never heard of fragile X syndrome, so I explained what it was and how it affected my sons.  I gave him some idea about how I wanted the reader to feel after reading the book.  I also had a clear idea of how I wanted the trajectory of the story to flow.  We decided to set out to do the hardest work of all…editing.  This process would involve James, first, taking the entire 100,000 words and cutting them down to useable, meaningful, flowing stories.  Then it was my turn.  I had to go through the grueling process of cutting my own work.  This was very difficult for me, as well as being very personal.  I never wanted to omit one single word or story about my sons.  I wanted to keep it all.  James reminded me that one of my goals for the hard work was to make the story readable.  That’s all I wanted.  I didn’t want someone to start reading it, find it difficult, put it down and never get back to it.  In the depths of my soul I wanted a person to start it and completely finish.  So, I made the sacrifices at the recommendation of James.  Polly reassured me all the while that my story would be wonderful and meaningful.  I wondered.

For 3 more months, the editing process went back and forth and back and forth, each time cutting, revising, changing, tweaking and smoothing.  It was harder than I ever imagined.  Finally, we agreed that the manuscript was as far as it could go. 

I needed more eyes to see it and to justify it for me, so I sent it to my friend, Cara, who, from the standpoint of another Mom with a son with fragile X, could share her own perspective in the process.  She was brilliant, and reassured me that the stories that I poured out of my own heart were understandable and clear.

Then, I needed the scientific view so I sent it to my friends and fragile X experts, Tracy and Mouse.  They combed through the details and gave me sound advice on the information and facts based on their memory as opposed to my own.  This was especially necessary since mine isn’t always so good. 

Concurrently, Polly had another expert named Nick design the cover of the book.  Nick was genius in my opinion.  He spoke to me only once and was able to come up with an amazing design that represented my own thoughts.  This is the one thing about the book that both of my sons relate to the most even though they have no idea what the story is.  The font of the title alone is very similar to our beloved Mister Rogers Neighborhood, which is enough to grasp the attention of Jake and Joe. 

We still had steps to do.  I was very anxious at this point to share all of my hard work, but knowing my name would be on the finished product forced me to be patient.  Next, the entire manuscript had to go to a Proofer.  It was my choice, but having one more set of professional eyes really seemed necessary.  Polly recommended a woman by the name of Jan.  Jan was able to speed through the work like it was second nature.  She submitted her recommended changes to me, and I made the questionable changes. 

The final big step was to have a professional layout person get the manuscript ready for print.  Because my book included photos and pictures of things, this was a bit trickier, but Andrea made it look easy.  She sent me 4 different suggestions on font, page layout, page numbering, paragraph and chapter headings, etc.  I chose one that particularly stood out for me, and we went with it.  At this point, I had to do a bit more work by filling in my biography, the acknowledgements and other additional pieces of the book aside from the story itself.  I wanted it to be as close to perfect as possible.  I knew nothing in real life was perfect, but I wanted to get close.

It was finally finished.  Polly explained that the final steps would be to upload the final manuscript on, which would become available on Amazon within a week.  She would set up my Author page as well as my createspace account.  My emotions were very raw and my excitement was palpable.  Chris was particularly encouraged because my mind could finally let go of the fine details of this book.  He had yet to read any part of it, but promised he would dive into the first copy.

About 10 days later I received my very first “proof” copy of the book in complete form.  It was a monumental moment.  I shed a few tears knowing that my heart and soul had gone into every single published word.  It had all come full circle. When the book came in the mail, as expected, my son Joe saw the finished product with his photo on the cover and immediately took possession.  I had to wait my turn to see my own work!

Then, Chris took his turn.  He isn’t an avid reader, but managed to finish our story in a mere 2 days.  His emotions were raw too.  I could see in his face that he was reliving all of the same facts that I did while I was writing it.  This, in itself, made it worth it for me.  He told me he was so proud of me for writing it.

It took a total of 9 months and several thousand dollars to do it, but I was very proud to have finished what I set out to do.  I didn’t know if my determination would prevail, but I now had proof that it could.  I read the book again.  It felt really good in my hands.  I had done this.  I had shared our story in hopes of giving back to all of those that gave to us.

Now, all I can do it pray that it gives hope to all of those that I intended to give it to.  It’s there now for the taking. 

"Becoming Mrs. Rogers: Learning to Live the Fragile X Way" by Cindi Rogers is available on Amazon.

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