Guilt......and Foregiveness

I am a hopeless optimist…but, that does not mean that I never feel hopeless.

Having two sons that were born with a developmental disability called fragile X syndrome can certainly lend itself to moments of hopelessness.  (for more information on fragile X syndrome, please visit www.fragilex.org) It took my husband and me many years of learning, patience and trials to come up with ways to cope and to survive some of the challenges that lay before us.  Seven months ago, I published a book entitled “Becoming Mrs. Rogers”, giving vivid details on the methods and strategies we have used successfully for many years.  This does not mean that our world is perfect.

In the early years, I found it easy to remain lonely behind the four walls of my home, surrounded by only the reality of occurrences that I was too embarrassed to share.  What I later learned was that I was only lonely until I had the courage to talk about situations that were happening, only to learn that others had experienced them too.  There was an entire population of people in the world that had things happen just like me!  To this day, it is still hard to muster the courage to share these sometimes difficult situations, but it is my hope that if I do, it will allow someone else to feel hope instead of hopeless.  This story is one of those. 

God only knows what all special needs parents really go through on a daily basis.  None of it is something that anyone would ever wish for, but it is often a grim reality. 

 

Fall 2013

We had our rare date night all planned out.  It wasn’t scheduled to be anything fancy; just a light dinner and a movie on a Friday night.  We almost never go to movies because we don’t think there is one that is worth the roughly $60 it costs for the show and sitter, so we wait for them to come out on DVD.  All of our usual caregivers were busy, so we asked our long-time friend, Julie.  The boys had not seen Julie in quite a while, but we thought it would be fine since they knew her.   We should have taken a clue and seen the signs of anxiety ahead of time, but as fate would have it, we were in a period of complacency.  See, I think this is when fate sees its opportunity to shake you to the core and wake you up! 

Our normal routine on any Friday night is to order take-out from Chili’s and, as our son, Jake would say, get a “bag”.  We set up the TV trays downstairs in front of the big screen and watch a movie while we enjoy our dinner from a “bag”.  Because this is always the routine, and we have built this structure, we decided to keep with this routine.  I mean, why would you build a grand, awesome structure and not maintain it, right?  Before Julie got to our house, we had it all set up, picked up and ready. 

On that same Friday morning, Jake happened to be off work because his Mentor was on vacation.  We were happy to see her enjoy her life, but that left Jake with Mom and Dad all day, which in his mind, is boring.  At the age of 24, he loved to work.  He would rather work than run errands with Mom and Dad. We visited the grocery store to pick up a few essentials and then headed to lunch.  We picked a spot where Jake could enjoy his favorite tacos, so we ordered him 3.  He only ate 2 and said he was done, which was a very rare occurrence.  In hindsight, I should have seen the signs at that moment, but I guess my mind was on a break.  During lunch, he continued to perseverate on the words, “Kids”, “Kids”, demonstrating his lack of knowing what was next—a clear sign of anxiety due to a break in his routine.  I responded with a standard, “No kids today”.  I should have seen right then and there that he was asking me what was next and what was going to happen later!  He wanted to know!  He didn’t know.  His schedule had been disrupted already and we were about to add to it with no clear guidance.

That afternoon, we told him that Julie would be coming over, and asked him if this was ok.  He responded, “Yes”.  During the course of the rest of the afternoon, he continued to quiz us on the schedule, and we repeated that Julie was coming later.  We reassured him that we would get a “bag” and that a movie was selected—his favorite, “Toy Story”, to emphasize the usual routine with only a change in person.  He would pander off with momentary satisfaction, only to return to us a few minutes later.  For years I made it the routine to prepare a clear and specific visual schedule laying out each step of the day, using even more care when the routine was going to change.   I had become reticent in my routine of preparing a schedule for this occasion.  Epic Mom fail.  Only in hindsight do I know this to be true.  Everything was NOT ready. 

Around 4:45 p.m. Julie showed up, we hugged and chatted for a few minutes, and then it was time for us to leave and for them to get on with their dinner and movie.  We all went down to the basement and got the boys situated on the couch.  Joe was on one end, Jake in the middle and Julie on the other end.  TV trays were loaded and prepped with catsup, napkins and drinks. We said goodbye and headed up the stairs.  Then, all of the sudden, and within 60 seconds of our lost presence, we heard Julie yell, “Jake, stop!”  We could hear Jake saying, “Ouch!!!” and then Joe got into the action with a loud wail!  Chris bolted toward the stairs and barely hit every other step on his way down.  I yelled for Jake to stop from the top of the stairs.  I heard Chris yelling at Jake to stop his apparent hitting of Julie and Joe.  Then, grunting and yelling.  I hurried down.  Chris had Jake in a full on hold, paying special attention to his feet as they were attempting, and sometimes succeeding, to kick Joe in the head and face.  Chris had Jake on his back in the middle of the couch in a tight hold, but needed help to continue the struggle.  At 6’1” and 190 lbs., Jake required every ounce of energy to control.  I got on the other side, removed Jake’s shoes and attempted to pull Jake up to a standing position.  He was ordered to go to his room. 

By now, Joe was wailing, biting his hand and looking for something to throw in his rage.  He was pissed.  I was in shock and Chris was stunned.  Julie stood by not knowing what to do, but seeking a purpose.  We just wanted everyone to be safe.  Chris quickly got Jake to his room and shut the door leaving Jake inside by himself.  He layed on his bed almost in a state of hyperventilation.  He was safe, although visibly upset.  I remained downstairs so that I could contend with Joe and get him settled down.  He had a reputation of destroying things.  Food was on the floor, along with catsup and water.  The carpet was in distress.  It didn’t seem to matter, but Joe was pointing it out which meant that he was stressed about how it got there.  A moment later, Joe started wandering around the room, seeking something to fulfill his need to tear crap apart. I kept my distance and went to mop up what was on the carpet. Before I could even react, Joe sought me out, rushed toward me and bit me incredibly hard on the shoulder.  I pushed him away while I fought back the tears, knowing that if I lashed back at him it would only add fuel to the fire. 

After checking on Jake, Chris made his way back downstairs and coaxed Joe to sit with him. Everything was happening so fast.  Chris hugged Joe firmly, giving special attention to the sternum area where the nerve center lies.  I looked around for a possible glass of ice water so that I could try to get Joe to hold it and perhaps drink it.  I remembered from a previous lecture that this can be a way to shift the brain into another mode.  I found one and offered it.  He took it in between his tears and runny nose.  Chris continued to hug him firmly and talk to him about his feelings.  The one thing we both knew is that Joe was mad and rightly so.  We had betrayed his trust by allowing Jake to get to the point where he went into fight mode and took it out on his brother. 

I made my way back upstairs to see about Jake.  He was perseverating now on, “Saaaayyyy” (I’m sorry), saying it over and over.  I told him that it was over now and we would talk about it later.  It’s done.  I had to try and calm him now, otherwise he would go through it over and over.  I knew this from years of experience, although it had been a long time since we had seen this kind of aggression from Jake.  We allowed Jake to do this without any regard for what Jake needed to feel safe.

It took 1.5 hours to get everyone calmed down and in a state of relax.  Julie went home after hugs and words of comfort and reassurance.  Now, Chris and I had time to sob and reflect.  We held each other as we had done many years before, and we analyzed the horrific incident.  I always have to analyze over and over until I feel as if I can live with whatever solution I come up with.  I needed to hear Chris’ take on it too.  It mattered what he thought.  We had to be together on this.  We both agreed that it crushed our image of contentment, and this was the hardest thing to come to terms with.  Years of just going along so well, and then BAM!  Wake up call.  This was the ugly side of fragile X.  This was the deep, dark reality that rarely occurred for us.  It confirmed what we knew but couldn’t admit; they boys would always need some kind of support.  It was engrained into their hard wiring and it was as necessary as breathing. 

One could say this was a behavioral outburst.  We knew better.  The whole philosophy that people with fragile X syndrome do have biological situations that can cause such an outburst was so clear in retrospect.  The outcome is usually evident when they shift into “flee, fight or flight”.  The look on Jake’s face was clearly one of extreme fear that led to fight and an attempt to get away.  His body was in full on defense mode when he didn’t have the evidence he needed to feel safe.  The other thing that we knew is that anything even close to this kind of behavior hadn’t occurred in Jake in more than 10 years.  If it were an ongoing situation, we might have thought differently.  In addition, we had seen this in Joe before, and while they are in the middle of the fighting, they hear absolutely nothing.  No matter what we offer, bribe, or threaten as a consequence, they are not capable of reason.  Nothing is more important to them at this moment than survival.  I had heard and seen this before. I knew the ugly look of it.  As we sat in realization that we would not have an evening alone, Chris says to me that, “Jake got his way”.  I disagreed.  Jake is the one that lives to please us and would do anything to conform.  This was not Jake we saw.  Chris knew this, but it was hard to admit.  It was the biological monster that lived within him, and only came out when it was absolutely necessary. 

I had not provided a visual schedule to give him the 3 things I knew he needed to feel safe; 1. What are we doing 2. How long will it last and 3. What’s next?  He was afraid we wouldn’t come back that night.  He did his best to give us all the signs that he was uncertain, yet we chose to ignore them.  We had spent years perfecting a visual schedule that I had failed to provide.  He had no means of communicating.  Now, we were faced with the worst possible outcome.  We were suffering guilt like no parent should have to face.  It was devastating to know that the whole thing was our fault.  We knew better.  We knew how to avoid this whole thing.  We had done it for many years.  Now, as fate would have it, we needed a wakeup call.  The solution would take way longer now.  We had completely breeched the trust of Jake and Joe.  Joe did not feel safe either.  He probably wondered if we could help him at that point, since we had not done it sooner.  I wondered too.  The only way to fix it would be to make a new and concerted effort to bring Julie back in small, well thought out, methodical intervals until the boys trusted us to tell them for how long.  It would take some time.  No, Jake did not get his way, and neither did we.  As we lick our wounds and swallow our pride, we know that we can move forward.  We have no choice.  We had already seen the other side, and what a difference doing the hard work could do. 

A month later, we made a plan.  We decided that we should have Julie come over to our house in the afternoon once a week just to chat and be present.  There would be no demand from the boys to speak to her or interact.  We would chat with her because she is our friend and she was coming to visit us.  We made the many visits positive and social.  The idea was to alleviate any negative association between Julie and the boys.  They are all important in our life, so the effort would be invaluable. 

After several months had passed, the visits were going well and everyone was interacting positively.  As often happens, life gets busy and the visits tapered off.  More than a year later, the opportunity presented itself to have Julie come back once again in a care capacity, and we jumped at it.  We had to try.  Julie, Chris and I were all slightly nervous but we talked about it and agreed to practice breathing and relaxing prior to any interaction with Jake and Joe.  They can smell nervous a mile away.  This was my chance to renew and heal a relationship that I had neglected.  I was at fault for the stress and consequence that we had suffered—all of us.  I wanted it to heal and move forward.

We all agreed on the plan to be calm.  Chris and I avoided talking about “who” was coming on this day, but focused all of our energy on the “what”.  The guys and Julie would go to a favorite museum, then to lunch at a favorite spot, then to Walmart to spend their holiday gift cards—all high interest places.  The “who” hardly seemed important.  We made sure to give them each full details about what the day would be like down to the very last detail, but left out “who”.  This is so contrary to everything I have done up until now, but we had to try something new for a whole new issue. 

Julie came into the house calmly and quietly.  We greeted like we always did.  She sat down and we chatted for a few moments, almost ignoring the guys altogether.  There was no upset, no anxiety.  Chris and I proceeded with our plan to run some errands and leave the house first just like we usually did.  Not a peep.  Not a whimper.  At that point, I was glad that I didn’t have any expectations because everything was going so well! 

We returned home after several hours and shortly after the guys and Julie returned home too.  Both Jake and Joe were completely happy with their “bags” full of goodies from Walmart.  When I asked how their day was, they both replied, “Good!”  Julie smiled and I could see the utter relief on her face.  Many months of apprehension and sadness from the loss of her presence washed away.  She and I hugged.  We knew that old memory was healed and would no longer be a part of our future.  We now knew how to overcome a new challenge that had come our way; but, we didn’t let it be something we couldn’t overcome.  We just had to take a new path.  We just had to take whatever time was necessary to make a new memory—a positive memory. 

Now we know that each of us is capable of filling in an injured space with a positive one.

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 createspace.com, 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.

Won't you be my neighbor?

I remember the day well.  I don’t remember the exact date, but it was in early 1991.  That is the day we got our diagnosis of Fragile X Syndrome.  It was a sad day for our family, but I really didn’t know why it was sad.  I knew nothing about fragile X.  After 23 years, I now know what it’s about.  

Together, Chris and I have faced some of the toughest challenges of our life, and we’ve emerged as stronger parents.  Some of the lessons we’ve learned are ones that we never asked to learn, they were just thrust upon us.  Some things we felt were necessary to learn in order to survive.  Through all of these trials and tribulations, we have persevered, but not without tears, frustration and growth.  

We’ve been fortunate enough to have our family and friends to help us through.  Many of the friends we have we would not have had but for fragile X syndrome.  It is a family obtained only through a genetic commonality.  Some of the other relationships we have valued so much are those of the professionals that have guided us with careful hands.  They have taught us, listened to us, and fought right along with us to arrive at this point in time.  We know that without all of these elements, none of today would be possible.

Some years ago, Chris and I realized the value of these precious relationships, and we knew we had to find a way to pay it forward to all of the families that were yet to come into this world of fragile x syndrome.  I had an idea!  About 9 months ago, I started to compile many of the notes I had made throughout the years of our boys lives, and think about writing a book.  Then, fate stepped in, and I met a wonderful woman who had done just that, and she offered her help to me.  And so, the work began, and 9 months later, I have a book.  It’s a story of our family’s life told by me, and written by me.  It is called “Becoming Mrs. Rogers”, and it is available on Amazon NOW! http://tiny.cc/BecomingMrsRogers
My hope is that it will help families to see the one thing that Chris and I had a very hard time seeing in the early years of diagnosis…..HOPE!  

If hope is something you can use then I want you to consider giving my book a read.  I ask this humbly, because it is my own personal story.  Writing this book was one of the most difficult experiences I have had, and I know the hard work is yet to come—sharing my life with the world.  It leaves me open to criticism, and judgment, and commentary.  But, knowing that my story is unique, just like every other wonderful family I have met, gives me comfort.  These families inspire me. Many of the little stories that I share are not so unique that others cannot relate, in fact, I hope that each reader will be able to shake their head in familiar recognition.  Whether you know someone that has been affected by fragile X syndrome, or it’s new to you, give me a chance.  All I want to do is offer hope.  

Could I humbly ask you to help me, too?  If you plan to read my book, would you be so kind as to share this post with others so that they might have the opportunity to experience it too?  Then, once you read it, would you go to Amazon and leave your comments and thoughts on your perception of my book?  Your help will be greatly appreciated!  In fact, it is bound to pay itself forward in ways you may not realize.  A portion of the proceeds from every book sold will go directly to the Rogers Neighborhood FX Family Fund, which is specifically created to help fund scholarships for families to be able to attend the bi-annual International Fragile X Conference.  This conference has been so helpful to our family, due to its ability to provide an immense amount of very helpful information in a short amount of time.  Won’t you be my neighbor in this journey?

        Buy Now: http://tiny.cc/BecomingMrsRogers