Friday, August 15, 2014

The Lost Chapter

I am a true believer in the theory that things happen for a reason. As Chris and I celebrate 29 years of marriage, and 38 1/2 years since we met, I feel truly blessed. Knowing that way back then, at such a young age, I had the power to elicit my own future..... This is an excerpt from an unpublished chapter that I wrote for my book "Becoming Mrs. Rogers" (which is now available on Amazon). In reality, this WAS the beginning...

Some people think that life begins at conception; others think it occurs at the moment of birth. For me, life began in the 7th grade. Mrs. Johnson’s 7th grade French class to be exact.

It was the first day of class following holiday break in January—2nd term of 7th grade at Creighton Jr. High. That’s what they used to call Middle School. I had just returned from 2 weeks of Christmas break, during which I took my very first plane ride. My Mother’s parents lived in Detroit, Michigan, and we hadn't seen them since we were babies. Money for plane tickets was not something we had, so Grandma footed the bill. She really didn’t have it either, but she made it happen to see us.

In January, as I walked into Mrs. Johnson’s French class, about to decide where I should sit, I saw my girlfriend Bridgette waving her hand. I took the seat she had already saved for me. The desks were arranged in 2 groups, both facing each other toward the middle. I sat on one side, and he, I saw him right away, was on the other. I didn’t know him! I wanted to know him; I knew that. What was his name? I asked Bridgette if she knew him. She said he lived in her neighborhood, and his name was “Chris something-or-other.” He seemed a little bit shy. I don’t think he noticed me at all, but he became the reason I looked forward to French class.

A few boys had caught my eye before the holiday break, but since discovering Chris, they were no longer on my radar. Honestly, they hadn’t really noticed me anyway, because I wasn’t a jock or a cheerleader or a freak or popular; I was just me. I had my select few girlfriends; both were neighbors and as different as day and night, so the three of us didn't necessarily hang out together. Lisa was my closest neighbor. She lived with her mother, stepfather, and sister. Her mother was expecting another baby, so responsibility was Lisa’s middle name. Candy was my other girlfriend, and she lived 2 blocks further but still walked to school the same way I walked each day. She was the youngest child of 3 with an older brother and sister. She was athletic and played after-school sports. This meant I usually walked home with Lisa, but the time together was always pressed by both our beckoning chores at home.

Looking at Chris was a welcome diversion from my home-life. He was so calm, semi-shy, and very cute. He had a cute smile and gorgeous hair, but, oddly enough, his hands were what really intrigued me. They were soft, steady, and gentle. They were nothing like my dad’s, which were calloused, rough, and weathered. He wasn’t super tall, maybe 5’9” or so, which was fine with me at 5’3” myself. I tried not to stare too much, but I wanted him to notice me. When the marching band was doing a fund raiser during lunch hour, I used my $1 hot-lunch money to buy Chris a candy bar. I wrote him a little note and held them together as I approached his locker mate. Feeling a combination of nausea and adrenaline, I asked in my sweetest voice if he would be willing to put the candy and note on Chris’ shelf. He balked at first, inciting in me a wave of panic, but he agreed. The note contained just a simple thought, “I saw you in Mrs. Johnson’s class and wondered if you’d like to call me sometime?” Then I gave my home telephone number. I could sense that I'd have to make the first move. I was not shy, and I could tell he was. Math and Social Studies were after lunch, and rather than listening to lectures from Mrs. Dixon on something to do with algebra and a history lesson from Mrs. Brown, I spent the rest of the day daydreaming, hoping, fearing, anticipating—you name it—whether or not Chris would call and what we would talk about.

After school, I rushed home to get my chores done, so I could wait by the phone. It happened to be a night when Dad would not be home until late, which made everything all the easier. [It’s OK to initial cap Dad in this instance because it’s being used instead of a first name… vs my dad] Right around 7:00 while I was watching “Love Boat” on my 13-inch black and white tv, the phone rang. I ran to answer. It was Chris!

We talked all the way through “Love Boat,” “Charlie’s Angels,” and into “Fantasy Island.” Chris was the first and closest thing I'd had to a boyfriend before this point in my life. My thoughts were singing! The next day I bought another candy bar and again had his locker mate place it on his shelf, this time he just rolled his eyes and obliged. Again, I raced home to wait for the phone to ring. I didn’t even know the phrase The way to a man’s heart is through his stomach, but my instincts knew as much.

Chris played basketball on a private team not associated with our school. When he did phone that evening, he invited me to go to his next game with him and his dad. I remember the agony of having to wait to ask my own dad, but he hesitantly agreed, even with only 13 brief years under my belt. Knowing that Chris’ dad would be there, I am sure, somewhat reassured my own father. Chris' dad picked me up at home, and we rode to the game together. As we sat in the backseat of his parent’s car, Chris held my hand tentatively. By the timid way he went about it, I could tell he hadn’t had too many girlfriends so far, either. I was comforted by that thought, and smiled.

I hadn't been to a basketball game before, and it was awkward sitting next to a dad so unlike mine who I hardly knew. The sporadic moments of silence were interrupted by his polite and few questions and my nervous and one-word answers. Either way, it was so exciting seeing Chris play. Even on the court, he wasn't all that aggressive, but I can tell you I didn't pay any attention to the game anyway. For all I know Chris could have been the only player on the court. His 1970’s mid-length hair bouncing as he ran. Whoa! That's what I remember. After the game, his Dad drove me home. Chris was such a gentleman; he opened the car door for me and walked me to the back door of the house. Then, the most exciting thing happened. Chris got the courage to kiss me. My first kiss from my first boy! He still tells me to this day that he remembers exactly what that first kiss felt like. I, on the other hand, tend to let go of such details. After that night, we made a habit of talking on the phone for hours every evening on school nights and several times a day on weekends. I woke up every morning with the best reason to look forward to school! We held hands whenever we were together at school. Although, in Mrs. Johnson’s class we still sat in our same seats across from each other. This gave me more opportunity to just stare and dream. Surprisingly, I still got an A in 7th grade French class!

A few months later, Chris invited me to a rock concert for our favorite band, Boston. My first kiss, my first boyfriend, and my first rock concert! Their self-titled album “Boston” had been played at least 1,000 times in my house since its release. I loved the rhythm, the beat, and especially the words to the #1 hit “More Than a Feeling”. The words were somewhat symbolic to Chris and me. Music was one thing we had lots of in our house. Dad had a collection of over 500 albums, and he didn’t mind sharing. The concert was held at the palatial McNichol’s Arena which seemed so large compared to the two of us small bodies held together by 2 hands. The crowd was phenomenal with everyone seeming older than us. We felt so grown up being among rockers that could actually drive themselves to the concert. In hindsight, and as I struggle to grasp the exact details of this night, it seemed like Boston played on and on and on. They hit every song that we could sing along to, and more. The lights, the smells, the energy were all so magical. Magical because I had my guy with me. I was sad to see it end. After the show, we made our way to the designated pickup spot and Chris’ dad met us. His dad suggested we grab a bite to eat at Denny’s afterward, which was so cool since I had not been up this late in, like, forever!

In junior high there was a late bus for transporting kids that participated in school sports to their homes. I didn’t ride it, but Chris did, but only because he had a class 7th hour; I didn’t so I would often hang out and wait for him. I’d fill my time doing homework, or chatting with other friends that hung out too. Just before the bus would depart, we found ourselves spending a few minutes after school each day, chatting, and sometimes even necking. That’s what they called it back then. The school sat next to a popular creek. Some of the “freaks” went there to smoke, and many others used it as private place to make-out; because it was hidden from the teacher’s view. It wasn't all that private though. Eventually, we made our way down there, and it wasn’t very enjoyable—too muddy and too crowded. Instead of spending our afternoons by the creek, we talked a lot on the phone and spent as much time during the school day together as we could.

After a few months of the telephone routine and few visits to each other’s homes, during a phone call, Chris finally got the courage to ask me to “go together” with him. This was like going steady, only more modern. I do remember this day, March 3rd, 1977. It is still a highly celebrated day for the 2 of us today. Wow! I was so excited! The butterflies in my stomach were in full motion! The true rumor spread like wildfire among all other 7th graders. I couldn’t have cared less what others thought, but I was pretty giddy over having a boyfriend.

The rest is history.....

Wednesday, July 30, 2014

It’s Never Really Goodbye….

Anyone who has followed my blog or facebook posts knows a little bit about our RV named “Rocket”.  We procured “Rocket” as our fourth RV in 2012 after years of successful trips and experiences with our two sons.  These are not “typical” sons…no.  They were diagnosed 23 years ago with a developmental and cognitive disability called fragile X syndrome when they were both very young.  (For more information go to

Like many years, this summer, we ventured out on a 3-plus week journey that would begin in California, take us up the west coast, project us eastward to Coeur d’ Alene, Idaho, and into Glacier National Park before taking the four of us back home to Colorado.  We don’t’ normally like to travel out of Colorado during the summer months, first, because Colorado is so beautiful in the summertime, and second, because everywhere else is either too hot or sticky for our liking or it’s too crowded!  This year was different. 

July of 2014 was the date for the 14th International Fragile X Conference in Anaheim, so we knew we had to make a much-desired west coast trip as part of that conference.  We needed to fill in our RV sticker map which only showed blank spots for Oregon and Washington so that the entire lower 48-state U.S. schematic was complete!  For me personally though, I had to make good on my promise to attend this conference as my 10th and final.  Why you may ask?  The reason is much simpler than most may think.

I remember many of the memories from the first few conferences I attended.  These were conferences packed with the world’s best experts on everything fragile X.  There are doctors, therapists, researchers, and many other parents; each one holding the key information that we would need to go one more day, one more month, one more year as the parents of a child or children with the genetic abnormality.  In the early years, I walked around the conference in a daze just taking it all in bits and pieces at a time.  I tried to go home and remind myself of each tidbit, but often ended up just feeling inadequate to handle all of it.  With each passing bi-annual conference, I grew more and more keen on what I was hearing, what I was learning and how to move forward.  I could tell other attendees were in the same exact boat.  No one felt alone.  As time went by, I could sense when a person I would lock eye contact with was a “newbie” or a “veteran”.  The level of tears usually gave them and me away.  I never wanted anyone to feel alone at this kind of family reunion.  Hugs would be exchanged and a few words of encouragement or support would ensue.  Then, it was friends for life. 

With each conference experience, I learned something even if it was just one thing; a new thing.  I gained more and more confidence in my own and our family’s ability to implement and handle whatever came our way.  We worked hard with experts in our own town to take it one step further.  We tried things and we failed.  We tried things and succeeded.  With each trial, we found ourselves succeeding more and more.  Each success garnered a new “tool” that would eventually make up my toolbox.  Chris, my husband, started to fill in his own toolbox with many of the same tools.  In a shrewd reality, he also possesses the one tool my own Mother describes as, “The war women have been fighting for centuries”….the dad voice.  I’ve tried to imitate it, but somehow it never works out for me.

We use our acquired tools every single day with these 2 boys; methods like “ready-not-ready”, side dialogue, picture schedules and more.  Each tool or method has required years and years of perfection, and still we are learning.  But, we feel as if we have a wealth of information to draw on and live with.  It still takes work each day, but now we are armed with all we need.  This knowledge is plentiful and crucial to our boys’ success.  Proof of this came in a loud and clear message for me this morning.

A bit of background:  After Anaheim, we stopped at several destinations, and eventually found ourselves in Seattle as a part of a planned stop to see family and friends.  During this stay, we got a call that forced Chris to fly home to take care of some business for a few days, leaving me and the boys in “Rocket” in Seattle.  This was not the plan!  I hadn’t prepared myself, let alone the boys for this kind of diversion.  We had to make the best of it in the name of survival.  We never had the occasion for me and the boys to be in “Rocket” without Dad.  On the contrary.  Dad often took “Rocket” while traveling and staying near a work site, leaving us at  home.  I had to figure it out.  It occurred to me, just this morning, that I had never had the opportunity to assist the boys in the shower in “Rocket”.  Never.  It wasn’t intentional, but Chris had always been around, so he did it.  It can be its own challenging routine for me to assist with showers at home, so this would require extra care.  I wanted it to be positive and successful in order to leave the door open for future opportunities. 

“Rocket” is not your typical RV.  She is equipped with everything one could possibly need to live anywhere she will take you, so this would not be a problem.  I pulled everything out of the cabinet that would be needed for showering; washcloth, deodorant, electric razor, and I placed the towel near the shower.  I prompted Joe, our most challenging son by far, for his turn to shower first.  He jumped right up from his spot on the couch and headed toward the bathroom.  I always keep a duplicate visual schedule for showering in “Rocket” mimicking the one we use at home.  I pointed to the visual without saying any words, and then I motioned for Joe to pick out some clean clothes from the drawer.  He went right to it.  Then, I pointed to step one of the shower process which is getting undressed.  This caused him to pause, sit down on the bed and proceed to get into a bag that was nearby.  I waited.  I used my calm voice and stated that it was time to shower and when he was ready he could begin by getting his shirt off.  Nothing.  I waited a few more minutes nearby, and again, stated that it was time to shower (pointing to the visual) and that I would wait until he was ready.  By now, everything that had been in this nearby bag was now all over the bed.  I disregarded.  It was not relevant to what I was trying to achieve.  After about 4 minutes, Joe took his shirt off, pulled his pants and underwear down to his ankles and again, sat down on the bed.  I know…I know…..don’t visualize it.  I ignored and so should you.  I repeated that I would wait until he was ready, but as soon as he was ready to shower we needed to get our pants off and put them in the laundry.  Nothing.  I waited.  The wait time now was a total of 12 minutes, which seemed like an hour.  I puttered with the items on the counter to indicate that I was ready.  Then, I repeated to Joe that I was ready, but repeated when he was ready I would help him.  I asked him if he needed help to remove his clothing.  At that moment, he uttered, “Help”.  I put my hand at his ankle, tapped his left knee to indicate that I needed him to lift his left leg.  After about 10 seconds he did.  I moved my hand to the right foot which then rose and his pants were off.  I handed them to him to put them in the laundry and without saying a word, he did. 

A moment later, I offered my hand to indicate that I was ready to assist with the step up into the shower, and he took it.  He was flapping the other hand and I knew this meant that the routine was causing him some hyperarousal.  I proceeded slowly and methodically.  I asked him to turn the water on.  He did.  We carefully moved through our normal visual schedule one step at a time, taking all the time we needed to get the task done and do it with care.  It was done.  We made it through.  Total time 40 minutes.  Do I care?  No.  Did we do it?  Yes.  Will Joe trust me to help him again?  Yes.  Did he care that Dad was not here.  Yes, but Mom said she would help him and I did.  We survived.  These are the kinds of skills and methods that I have learned over 23 years, at 10 International Fragile X Conferences and with individual consults from the best professionals anywhere.  I know I can persevere.

This knowledge and its implementation is something that I think any parent would do if they needed to.  It’s certainly not something I had a life goal to learn, but it has helped us tremendously in the life we have.  As parents, we do whatever is needed to survive!  This fact alone contributed to my slight embarrassment and overwhelm during the amazing going away party that was given in my honor during the conference in Anaheim.  Some of my dearest friends showed up to give a most wonderful tribute to my time in this fragile X world.  To me, though, it just seemed like a very natural thing.  It never seemed extraordinary or exceptional.  It was just a natural evolution and sharing of knowledge that was meant to make our own life better.  Why wouldn’t I want to pass that on?

The hundreds if not thousands of kind, giving, sincere, incredible, amazing people that I have met and remain friends with at these conferences will not go away.  We will not go away.  The gifts that they have brought us are irreplaceable; the gift of friendship.  It’s forever.  The HOPE that we were given in the early years has blossomed into a pool of cool, refreshing, rejuvenating energy that we try to share with every family we meet.  “Rocket” will continue to take us to destinations where we can meet and share this pool with other families.  WE will continue to need HOPE as we make our way into the future.

Update:  Day #2  Total time to shower Joe--19 minutes.  That more than a 50% improvement over day #1.  The only steps I really had to duplicate were offering my hand to help him step in the shower.  He undressed himself, picked his own clothes, and moved through the shower routine just like normal.  I went through the basic same steps when prompting, but there was absolutely no waiting.  The downside is that Dad returns tonight and he is back on duty tomorrow.  I will be having a glass of wine :)

A special thank you to Tracy Stackhouse and Sarah Scharfenaker of Developmental FX in Denver for teaching us these invaluable methods that make each day possible.

Wednesday, October 9, 2013

My "Rocket" Men

Appendix provided in advance to ease your reading experience:
B.A.R.V. – Big A** RV
“Rocket”-The name of our RV
“DDD” – A Food Network program called “Diner’s Drive’-ins and Dives”
Fragile X Syndrome – A genetic developmental disability-for more information, please visit
Camping was never a goal for my life when I was young, but fate pushed me to it.  Fate can be a funny thing.  Who knew that it would be my fate to be married to the best guy ever, even though I met him in 7th grade?  Who knew that we would have 2 boys, and both would be affected by an intellectual disability called Fragile X Syndrome?  Who knew that we would love them so much that we would literally do anything, even camping, to help them have a better quality of life?  Oh fate is an awesome teacher.

Did you ever start out a journey with the intention of learning lessons?  We did.  You see, when you travel by B.A.R.V. you always learn some lessons. Our current B.A.R.V. is our 4th RV, so we have a little bit of experience.  We know that some lessons are intentional, some are not.  Some are good; some are ones you wished you had never learned.

The unintentional learning comes almost silently.  Lessons learned in an RV are unique; unlike any others; and filling a world of their own.  Like, when I am making my way to the bathroom while the RV is in motion, knowing full well that it’s better to wait until we stop.  I’ve known about my need to pee for at least 20 minutes, but now it’s urgent.  I venture out.  I straddle quietly over Joe, as he sleeps with his legs outstretched over the aisle of the RV, while it’s moving.  I don’t want to risk touching Joe, otherwise he will wake up, and God help anyone who wakes Joe!  When I do finally make it to the bathroom, I am forced to grasp the sink tightly while I pee, as Chris turns a sharp corner just as I sit down.  These are amazing skills that will carry me far in life!

Intentional learning usually occurs by way of a “learned” lesson.  For example, before we left home on this long journey, from Colorado to Massachusetts and all points in between, we reminded ourselves of a recent trip we took to the south.  On that trip, we had some wonderful families come visit us for a potluck.  One of the young men locked us out of the RV, unintentionally.  So, before we even took off on this trip, knowing we were going to see families and kids, we prepared….we thought.  We have a remote key fob with our RV and we made sure it was secretly placed outside the RV so we could get back in if a lockout occurred.   Is that enough foreshadowing for you?????

It is always the people that we meet and spend time with that make trips in “Rocket” fun and worthwhile.  Paola, KS, folks greeted us with warm weather and hot food from a “DDD” place called The BBQ Shack, just down the road.  We had about 6 families come out and spend some time, including longtime friends, Angie Grantman, Brooke Stack and her family, Christina Murphy and family, as well as Donna Beauchamp and Spouse.  The kids played with “Lulu” our dog, and entertained themselves with food and other activities.  There was a nice playground just feet away! 
Next thing ya’ know, the adults are all outside and we hear a pounding from the INSIDE of the RV.  “Help! Help!”  Uh oh.  It seems that Ryan Stack, 8 years old, had somehow managed to lock himself INSIDE “Rocket”.  Our son, Jake was also inside, but occupied with his computer while listening to youtube with his earphones on.  Ryan began to hyperventilate a bit and cried for his Mom to help him.  My husband, Chris, quickly reached for the fob and attempted to unlock the door, per plan!  We heard the “click”, but the door would not open.  This prompted Ryan to become more scared and more vocal in his request for help.  We continued to try the fob and help Ryan to calm himself.  Ryan’s Mom stood by as I tried to verbally guide Ryan to help himself to unlock the door.  Problem was, I could not picture in my mind what the task needed to be!  Very frustrating.  By this time, the “helpful people” that Mister Rogers always refers to in any crisis, were coming to our aid.  We’ve found that camping people are always nice and helpful.  A small crowd was gathering around the RV as people ascertained that we were in distress.  We continued this routine of trying to unlock the door, while Ryan continued to click something on the door from inside.  It wasn’t working.  Now, the neighbor offers to loan us a key that “might” fit.  Not.  “Rocket” has a specialized set of door locks, only available in aircraft of this kind.  Ryan kept saying, “Turn” as I tried to describe what he needed to do.  He was exceptionally calm whenever we tried something specific.  This I found to be quite amazing.  Crying and banging on the door one moment, and focused and calm when we directed our efforts.  Finally, it occurred to me that there was a little window next to the door that required him to “turn” the knob.  I asked him to turn it and to keep turning until it was opened enough for me to reach my hand in, pop out the screen, and be able to touch him.  Ok, we had some person-to-person contact now.  I couldn’t reach the door lock, but there was another set of keys inside a cabinet above the driver’s cockpit. It required Ryan to step on top of the driver’s chair and get inside the cabinet.  With direction, he finally did open the cabinet, but he (for some unknown reason) would not reach in and get the keys.  THEN!  All of the sudden, we remembered that Jake was inside.  So, we coaxed Ryan into getting Jake’s attention (this is hard to do when he is watching youtube)!  Jake, calmly, got up, got the keys and handed them to us through the open window.

You might think that the lesson learned here was to keep a full set of spare keys outside of “Rocket” for occasions just like this.  No.  The lesson for me, personally, was to always remain calm.  It would not have helped if everyone was on the same upset level as Ryan.  It also reaffirmed something I already knew (but often need a reminder of); our kids ARE capable.  Our kids CAN do things.  Our kids CAN HELP. It’s up to us to figure out how to utilize their skills to allow them to do it!  It really was an amazing time.  Even with the slight tension of knowing that we might have to sleep on the picnic table outside (yeah, right….not with Joe!).  It all came out ok.  We were all ok.  Afterward, Ryan seemed (maybe it’s just me that saw it this way) to have a renewed sense of himself.  He enjoyed the rest of his time and even gave me a little hug before he left.  It was priceless.

Traveling through 19 states and visiting numerous families also affected by Fragile X syndrome is most often a challenge, even for the most experienced traveler.  It has provided so many opportunities for me to use my much-loved analytical and experimental self.  My pseudo-Cindi if you will.  

Taking Jake and Joe out of their comfort zone always requires a lot of planning on my part, but new places AND new people…super challenge.  People they have never met before, tons of small children, as well as unheard of traffic (Boston) and noises that we’ve never really had to adjust to (boats/ships)….a real experiment.  What I found though, is that they are really going to do their best if we follow some consistent methods.  I still used many of the same picture symbols to prepare their schedules.  I had the best luck using familiar and predictable wording.  It also seemed much calmer when we avoided the “unsaid” stuff. 

For example, when we ate out at a restaurant with wonderful friends like Melissa and Eric Welin, and Kathleen Quinn and Dennis Hazelwood, we were going to a “DDD” spot in Boston.  The layout was completely unknown to me; the environment was foreign so I could not provide much of a plan.  But, it was a restaurant in the mind of Jake and Joe.  We had also looked online at the menu ahead of time, so we knew they would have some of the boys’ favorite foods.  We stuck to those facts.  I printed a quick (Yes, we have a printer in “Rocket”!  It comes in very handy!) picture of the people from Facebook (don’t you love FB?) so we could talk about who would be there.  All of these elements really helped make the evening at the Boston Burger Company really special.

The same goes for when we had the opportunity to visit Joe, Leslie and Nick Garera in their lovely home.  We prepared based solely on what we DID know, leaving out the unknowns.  The boys did wonderful!  In fact, before leaving, Nick claimed they were “his boys”.  What a compliment!

There were several times where we had the opportunity to test the idea of entertaining right at “Rocket”.  We had a wonderful evening with The Butler family in PA, and the Zeleznik family in IL.  We also had the unique experience of hosting 5 families in MA.  Joe, especially, reminded us that he has always been better at coming to others rather than them coming to him.  So, we practiced doing it that way.  Nothing is ALWAYS the rule, or perfect, but in general, this philosophy worked like a charm!   So, whenever someone came to us to visit, we greeted them outside and waited for Joe to come to the door to ask them in.  I found that if I gave him visual and verbal notice ahead of time that someone was coming, also helped.

We have had the opportunity to travel many miles in “Rocket” over the years and have enjoyed many “DDD” spots as a result.  So, we know that checking them out online ahead of time is the best idea.  Some of the yummy food we see while we watch the show, is not something Joe would ever eat, so we peruse the menu.  It was no different when we went to a non-“DDD” called Zingerman’s Roadhouse with our friends Mary Beth Langan and Ted Coutlish.  It did not matter that it was not a “DDD”, although we really think it should be! Everything was delicious and we had a fantastic evening in MI!

There were several times that we saw the amazing adversity in Jake and Joe.  They were able to really initiate a conversation with others.  When we went to another “DDD” spot in NJ, 10th Avenue Burrito, with the awesome Fasciano family, we followed the same tried-and-true method of a “known” visual schedule and photo of them.  Having the Fasciano boys, who are 12 and 15, there, really brought out the best in our own boys.  They enjoyed just hanging together and we even managed to get a photo of the 4 boys together.  Everyone was able to hang out a few minutes in the RV afterward, which all of the boys enjoyed.

We had 4 days of just family time during our stay in the Pittsburgh, PA, area.  We visited the much anticipated Pittsburgh Children’s Museum to see the Mister Rogers exhibits, as well as the Heinz Center, where they also have some Fred Rogers memorabilia.  It was nice to get these “high interest” visits over early in the trip to help the anticipation factor, but one thing I learned this time around was to save a few small surprises for the end.  I didn’t do a good job of that, but will make note for next time.  It might help prolong the fun a little bit longer rather than it just be about getting home.

Being exposed to many children, both young and around the same age, opened up our boys’ world to a higher level of tolerance.  They are not around young children very often, and this gave them a chance to learn and us a chance to observe.  We made sure to provide breaks whenever needed and allow them to withdraw at will.  This made it a successful visit.

For me, personally, I was allowed to further my own mission to help other families, during this trip.  One way that I was able to do that is by presenting our story in a presentation affectionately called, “Mrs. Rogers Neighborhood”.  I had the honor of giving that presentation in both the Lancaster, PA, and Sioux City, IA areas.  It gives me a great sense of peace when I can meet other families and tell how proud we are of our boys and their successes.  After the PA mini-conference, I had the privilege of spending some time with 3 other really great Mom’s.  We chatted and shared stories.  It was a nice evening of friends, food and fellowship. 

Following the full-day conference in Sioux City, expertly organized by Tim Geels and his lovely wife Jammie, Nancy Carlson and Brenda Slama, our whole family, along with several others shared experiences and sat together for hours at a potluck dinner, laughing and eating.  The demands were high on all of the kids with the noise, new environment and sheer numbers of people.  All of the kids did wonderfully.

As with all trips we go on, the FOOD was amazing.  We cannot even discuss a trip without talking about the tasty vittles from each place we visit!  From the Cronuts (donuts made from croissants, OMG) hand- delivered by Paula Fasciano, to the delicious and beautiful cupcakes brought by Amy Zeleznik, to the baskets and bags of local goodies thoughtfully provided by Ruth Butler and the Sioux City group, to the scrumptious pie that Leslie Garera served… was all amazing!  We had to make a 2nd visit to a few of our favorites like DeNic’s in Philadelphia, and Primanti Brothers in Pittsburgh!  Nom nom.  We love the idea of eating our way through our wonderful country!  My waistline isn’t so fond, but it’s vacation!!!

I am constantly reminding myself of how many of these people I would have never had the privilege of knowing had it not been for the Fragile X diagnosis.  In the early years, we were not at all enthusiastic about such a prospect, but now…..our lives have been greatly enriched.  I know I am a lucky person.  I have had great support from professionals throughout our boys’ lives, as well as personal support from many friends.  One unique group of friends that I lean on pretty heavily is a group of ladies that calls themselves, The Birches, named after the ever-strong, ever-bending Birch Tree.  The very intimate, personal chats from Melissa Welin, Holly Roos, Kathleen Quinn, Amy Zeleznik, Mary Beth Langan, Paula Fasciano, Talitha Humphrey and Karen Kelm, have been invaluable.  The support we provide each other is also invaluable.  It is my hope that each and every Mom and Dad faced with life challenges will have strong support; if for nothing else but an ear to listen or a shoulder to cry on.  I am thankful for the Birches.

As we reflect on this awesome journey, we will always talk about the incredible growth we continue to see in Jake and Joe.  This trip was quite a test!  They passed, in our minds, with flying colors!  It’s been a long road, but I would not trade our fate for anything.

Tuesday, June 4, 2013

Is There More to Life???

Sometimes I allow myself to think about when our son, Jake, was first born.....BFX—Before Fragile X.  He was the cutest baby boy ever.  I know this is true because I, personally, had never seen another boy so precious.  He was perfect in our eyes. 

We did all of the stuff our parents and friends had advised us to do.  We did all of the Pediatrician appointments right on schedule.  We immunized.  We fed him when he was hungry, and changed him when he was soiled.  When I watched commercials on television, I could relate to every baby commercial.  It was all as expected.  We were so happy. 

As he grew, there were little things that didn’t mesh with what experts said was common.  We worried a little bit, but, we went on with life and all of its joy.  Those were the days of carefree thoughts and hope for the future. 

Then, in 1991, when our newborn was 3 days old, we got the news that Jake had Fragile X Syndrome.  Subsequently, a few months later, Joe was also diagnosed with it.  The fantasy life was over….at least we thought so.  Much time has passed now….22 years…..and we have come full circle.

Yes, Fragile X Syndrome does exist.  Yes, my 2 boys are affected by this genetic developmental disability.  Yes, we’ve known for 22 years.  But, lately I’ve been thinking about other things.  Life things.

I think about when my boys were young and when Fragile X and all of its evil symptoms reared their ugly heads daily.  We were consumed with the management of it; we were raising awareness so their world would know more about it and accept them; and we were busy with their full-time care.  Now, not so much.  It’s because we did something.  I know that now.

Beginning when our boys were about 8 and 10 years old, we rallied all of the troops (our “team” as it were) to make a difference in their lives.  We studied every method and approach known at the time.  We tried them out to see what worked and what didn’t (we are still working on that one), and we implemented one at a time.  Slowly, but surely, over the next 8-10 years we saw progress.  Some progress was almost immediate, but other things required more patience.  We saw these boys come to life and be able to do things on their own.  Don’t get me wrong… takes a lot of patience and perseverance on our part to make each little thing work. In fact, when it comes to a routine task like brushing teeth, we are still trying to figure out each minute step.  But, we have not given up!  There are many other skills to work on as well, but one at a time!  We don’t feel in such a rush for time to pass by.

Of course, we did the annual (and sometimes bi-annual) visits to the experts.  We tried no less than 30 different medications.  Some worked as expected….others not so much, but, we tried.  We pursued every therapy known to man, and did the work at home to reinforce it and build consistency.  There were no guarantees…only the hope that our efforts would reveal a small glimmer of hope. 

How do I know things have shifted?  I can see a newborn baby and not be jealous of the possibility of a “typical life”.  I can see a wedding and not cry for what could have been.  I can see kids now and just see the kids.  And, most of all, I can see my boys as human beings…..not as “boys with Fragile X Syndrome”.

We get up each day knowing that progress can happen with the right support and knowledge.  We have hope for the future.  We can see change happening right before our eyes still to this day.  It is very empowering to know that WE did this.  All 4 of us together.  We made the effort and the boys rose to the challenge. 

Which brings us to the current day.  Nothing is perfect, and neither is our life.  But, we have the tools and resources our boys need to keep going.  We don’t have to worry about every detail every day.  We still work on skills and proficiency and patience.  We worry about whether the “plan” will work out the way we think it should.  We worry that there will be enough money to take care of all of it.

Yes, Fragile X still lives here.  It’s genetic!  It’s not going away!  But, time and effort has allowed me not to think about it every waking minute.  Now, I cannot help but think about our business, about a relaxing vacation on the beach (someday), about taking off in “Rocket” (our RV) and HAVING a peaceful weekend WITH the guys.  Yes, it’s all come full circle now.

I actually find myself daydreaming about typical things, like retirement (it’s still some years away, unfortunately) or recalling memories with friends that have nothing to do with Fragile X.  I can even think about myself.  I can take time to go for a 3-mile walk.  I can enjoy time with my book club, after having actually READ the book! 

I like to think about this as an evolution.  A real life natural evolution.  Is this the way things are supposed to be?  Perhaps, for our children to consume our every waking moment until they are young adults and then allow ourselves to move on IS the natural evolution?  A way to move forward?  To emerge as a person now, and not just a parent?  That all sounds pretty typical to me.

Tuesday, May 28, 2013

Fresh, Clear, Well-Seasoned Perspective

Perspective has been a great teacher and I, a great student.

When I was young, I would sit on the porch in the summertime eating my cherry Popsicle with my best friend.  We would complain about the utter heat until perspective reminded us of the -20 degrees that we had complained about 6 months prior.

There was a blind young lady that lived across the street from us when I was very young.  She taught me, even at a young age, about compassion and empathy.  Never mind, the fact that she taught me to appreciate the gift of sight.  As I walked with her through our neighborhood, her holding my hand, I often wondered what it would be like to not be able to see everything around me.

As I got older, and my boys were born, perspective was still teaching me.  When Jake was diagnosed with Fragile X Syndrome (, and Joe soon after as an infant, I questioned how it could get any worse for me?  Raising 2 boys with a severe developmental disability was not a perspective I wanted to learn!  But, when Jake entered preschool and I observed children that had a limited life-span, or a condition that required much more care than he, I was again, the student of perspective.

As the years went by we were privileged to become acquainted with hundreds of other families with children affected by Fragile X Syndrome.   At first, our boys were always younger than those we met which provided us with lots of perspective about the future.  We clung to each and every tip or hint given to us, and to the hope for the day-to-day coping skills we so desperately needed.  Hearing that kids older than ours learned to do things for themselves and held jobs, was a welcomed perspective.  We weren’t alone.  I gave myself permission to shed tears.

I clearly recall the first family we met at our home with young adult boys.  This experience gave us a whole new perspective on what our future might look like.  It was a little bit scary at first, but in many ways it was much better than what our own imaginations had created in our minds.  These young men were well behaved, mostly independent, and of course, handsome.  These families provided us with perspective without even knowing it. 

Then, and very subtly, all of the families began to have kids that were younger than ours.  We became the teacher without even really realizing it.  We didn’t really understand how our challenges could give others something to cling to.  It was a matter of the cycle of experience….a natural progression.

Sometimes perspective comes from things that have happened to me….like I was my own teacher and student at the same time.  For example, today when I observed Joe doing something with ease that only 5 years ago was a struggle, the evidence is clear that time can be a teacher all by itself.

Even during the small events of life, perspective has been there to remind me, or help me see difficult things differently.  Like when we go to a restaurant (something that was almost impossible when the boys were young) and something about the food is not satisfactory.  Perspective helps me focus on how well my boys are behaving and shift my mind to what’s important.  Or when we have a serious mechanical issue with the RV while we are travelling….even though my instinct dictates that I freak out, I realize those boys are “going with the flow” and figure I might as well, too.

Perspective has taught me to say “oh well”.  Outside of the Fragile X World, without even knowing it, I have been a teacher.  A friend of mine came up to me the other day and said, “Oh, Cindi…remember the other day when we were talking and I was complaining about how I was disappointed in my son?  I so desperately want grandchildren, but he is not ready and we don’t see any sign of it?  Well, I wanted to apologize.  When I see you and your strength with your life and how you deal with your boys, I am inspired.  I had no right to complain.”  I replied, “Oh my gosh!  Don’t apologize!  We all have things in our life that are not to our expectations.  But, I am glad I can provide some perspective for you.  You never need to apologize to me.  I, too, have gained perspective from others that have had it worse than I.”

As we face the prospect of moving to the next chapter in our boys’ lives, we will be looking for perspective, but we will continue to provide some, too.  The groundwork has been laid.  We are moving to a phase where we need some perspective from outside of the Fragile X World…….to know that there is another life out there.  That is the next phase.

What a gift perspective has been for us.  I hope that all of the experiences we’ve had with our boys can help others in the Fragile X World to see that hope exists.  I want to provide that perspective and be sure that it sticks like glue.  No matter what the world may throw at other families, they can survive.  They can move forward.  They can thrive.  They can have a great quality of life even with Fragile X Syndrome. 

A quote from Anton Ego in the movie “Ratatouille”:  “…… you know what I'm craving? A little perspective. That's it. I'd like some fresh, clear, well-seasoned perspective. Can you suggest a good wine to go with that?”

Saturday, May 4, 2013

Making Lemonade

Things happen in life.  Sometimes they are things we planned, and other times not. 

When it comes to life choices I imagine the first real experience as an adult should be like the entry gates to Disney World.  There would be several lines to choose from.  So, when our parents are finished with their initial job of raising us, we get in a line.  Of course, a greeter would direct each person.

“The line to my right is for ice water.  This life is plain, predictable and quite boring.  You will have security, but only a few select friends, and no spontaneity at all”, he would explain.

“Now, the line to my left is for lemonade.  The lemonade line is for those who want unpredictability; a life full of diversity, some excitement, some challenge, and lots of friends.  This life will be hard, but fulfilling.”

Everyone knows the saying, "When you get lemons, make lemonade".  Well, as a young adult, I never drank lemonade, and I surely didn't want to have to make it!  I know I would have chosen ice water.  No doubt in my mind.  I preferred predictability (although there wasn’t much in reality—is there ever?), and I would have thrived on the mundane.  Of course, that’s not reality at all.

When I think about the choices I have made I am content.  For example, had I not chosen to take 7th grade French class, I never would have met Chris, my husband.  I cannot even imagine life without him.

We chose to have children, and hoped that our first would be a boy.  He was born and that was a blessing. 

We had a second child, and it, too, was a boy.  Now, here is the part where I say, be careful what you wish for, as it may come true.

In 1991, we learned that both of our boys were affected by a genetic disability called Fragile X Syndrome.  The rate of Fragile X in boys is much higher than in girls.  How could that possibly be a blessing?  Most, like us, fail to see how this could be a blessing. 

When we would watch our sons struggle to make it through each day, we did not think it was even close to a blessing.  When we cried daily, weekly or monthly over another lesson that we were forced to learn; one that we never intended to learn, how was that any kind of blessing?  Being forced to learn all of the laws pertaining to an education for our boys, or learning which medicine caused fewer side effects, or how to get one whole night of sleep…these were not things we asked for or wanted.  How was that a blessing? 

Seeing one’s children suffer to exist in a world full of sensory stimuli when they couldn't deal with it, was literally torture on a parent.  We were consumed by so much grief and suffering that we could not possibly see any kind of blessing.  We just hoped for survival.

Once, when the boys were little, we even attempted to take a vacation to a dude ranch in Aspen, Colorado.  The large amount of cash spent and the unsuccessfulness of it--that was not a lesson we wanted to learn.  We wanted to have a good time and see our boys in a happy state.  That did not happen, but, we did learn. 

Another time, after trying to figure out what might work for them and help their world co-exist with ours, we took another vacation to a cabin in the Colorado Mountains.  Another failure.  Another lesson.

Other lessons were daily ones, like trying to keep Jake interested in school so that his behavior wouldn’t become a pattern and pave the way for more of the same.  I am sure I could list at least 100,000 more examples of lessons learned, but that would bore even the Pope.  Suffice it to say that, we have had our share.

So, now that Jake and Joe are adults, we can reflect and see the contrasts.  We have arrived at a peaceful place where enough time has passed that we can clearly see the reasons for these lessons.

I cannot imagine life without the Fragile X Family that we have grown so close to and depend on for support.  Life would be quite lonely without them.  We have friends that we treasure dearly that are not associated with Fragile X, but I believe that the outlook we share with all of our friends stems from our perspective gained from Fragile X.

I am thankful that we sought answers when, as a baby, Jake was not speaking a single word.  Imagine!  Being thankful for that!  But, this caused us to go to the Children’s Hospital of Denver where we met Dr. Randi Hagerman, and subsequently got a diagnosis of Fragile X Syndrome.

Had we not had difficult behaviors with both boys, we never would have sought a solution.  We never would have met Tracy Stackhouse and Sarah Scharfenaker (owners of Developmental FX and “Rockstars” of the FX world).  Now that we are here, they have and will always play an important role in all of our lives.  They taught us all we know when it comes to day-to-day life with Fragile X and its source.  Had it not been for them, I would have never learned enough to be able to present “Mrs. Rogers Neighborhood” to all of the families that I have.  It has been such a pleasure to share the stories of our life with others in hopes of bringing them their own hope.  This is a big part of who I am.

If Jake never had behavior issues in school I would have never had the idea of creating the reward system that he still uses today.

For Joe, if he had never had all of the difficult and extreme behaviors that he’s had, we never would have learned all of the 1,000 ways to help him and allow him to be a participant in life….not just a lost soul.

If we had never had those dreadful vacations, we would never have bought “Rocket” (our RV), and had all of the memories that it has brought us.  We figured out how to makes vacations doable for the whole family.  It has also allowed us to connect with others that like to travel and camp with Fragile X kids, like the Brian Family from Georgia and the Kelm family from Calgary, Canada.  In fact, I remember the day that Lisa Overton Brian came to me with photos of their first camping experience.  They were so excited to tell me how successful it was for their son, and that they were inspired by our “Rocket” story.  We look forward to many other stories of families enjoying new experiences like we do.

I wouldn’t wish these lessons on anyone, don’t get me wrong.  I would not suggest that anyone stand in the lemonade line, except maybe to keep me company.  I am certain that I am not through with lemonade, or lessons.  In fact, I hope not!  That’s a lie….some of the lessons I could do without…..Now, I just enjoy my lemonade with a lot of friends, with my family and with a shot of rum.

Friday, January 18, 2013

My Fragile X Life-A Chronological History-Part 2

Earlier I wrote about our first decade of living with fragile X syndrome.  To read Part 1 click here:

For us, the 1990’s were a decade of learning, evolving and, grieving. Even with as much as we had learned already in our journey, there was still much work to be done, especially on the home front. The 2000’s turned out to be a decade of changes, challenges, and implementation.

What follows is part two of a two part series; I hope families who are not so far along in their journey can perhaps learn something from our experiences, from how our lives have evolved from those early days of shock to our current days of (mostly) joy.

A New Decade

The new millennium brought many new adventures our way. There was still much work to be done, especially on our own home front.  We shifted our priorities from trying to raise awareness to just focusing on how to help our own boys.  We were now ready to face the reality that lay before us.  It took us some time to be able to “face the music”, but we knew it was the next step in the grieving process.
At some point, what we really discovered, again I don’t remember when, was that this long journey…..was all about US.  We were the ones experiencing change; we were the ones grieving; we were the ones facing the challenges.  The boys were just the boys.  They were born with this thing called Fragile X, and they knew no different.  They were simply waiting; waiting for us to get our “poop in a group” and love them, and teach them, and face them.  This was the revelation.
In the summer of 2000, the 7th International Fragile X Conference was held in Los Angeles, CA. By this time, my whole family was very invested and involved in Fragile X so my Mother, Father, Sister, and I attended this one. It was at this conference that I met some other long-time friends in the Fragile X community, like Kareen Weidenfeller and Tracey Shaffer Weinstein. Both of these ladies’ smiles are always present and always evident at every conference. They both also have children about the same age as my boys, which helped form a bond among us that remains unbroken.
Up to this point, Jake and Joe had been cute, adorable, loving, cuddly little boys.  Chris and I were able to manage their day-to-day care, even with both of us working full-time. But, now they both required more therapy and a much bigger slice of the “time pie”. If one or the other was sick or needed to go to the Dr., one of us had to take off work, and this was a lot!  We both pitched in and survived this time period, but I have no idea how.  I suspect it can be attributed to sleep-deprivation.
In 2001, I decided to give up my full-time career for a more challenging daily life; managing my own boys. Even though my paid job required 60 hours a week, this new challenge proved to be no simple feat!  Jake was 11 and Joe was 9. Puberty was just around the corner and behaviors and changes were upon us. It took me nearly 6 months to adjust to this new lifestyle. After that, I planted my feet deep in the soil and held on.
This same time period was also a big year of change for the professionals that had been in Denver. Dr. Randi Hagerman, Dr. Paul Hagerman and his team, as well as Tracey Stackhouse and Sarah Scharfenaker (a.k.a. “Mouse), and others moved their practice to Sacramento, CA, to the M.I.N.D. Institute. This was a huge change for us and for the Fragile X community of Denver. The National Fragile X Foundation had already been relocated to California, so Denver almost seemed like a ghost town. For us, it also meant an end to the weekly visits with FX families, something we missed very much.  Additionally, I passed the torch for managing the Denver support group.  I needed to focus solely on our family.

Finding my “Path to Purpose”
We worked with various therapists for a time, continuing the methods and strategies that we had learned prior to this point.  In late 2002, Tracy and Mouse moved back to Denver. In 2003, they founded their own non-profit company, Developmental FX. What a miracle!!!  Now they were in Denver full time and providing multidisciplinary assessments, intervention, consultation, and follow-up in the areas of occupational and speech/language therapy, psychology and developmental medicine, for children and families. As a bonus, I could say, “I KNOW THEM!!!”  We worked together very intensely for several years developing a specific plan for our boys. We refined and “perfected” tasks and methods just for Jake and Joe.
Looking back, I believe that prior to this time I was not ready to take in or hear what needed done.  Of course, I had heard many of the very same strategies and methods to try from many others before this, but I wasn't ready to listen.  As they say, "Necessity breeds invention".  I understood now.
In July, 2008, I gave my first presentation of “Mrs. Rogers Neighborhood” (a seminar about living the "Fragile X Way") at the 11th International Fragile X Conference in St. Louis, MO. I was so nervous!!!  I was sharing very personal elements about our family and our boys. The crowd was very quiet as I gave specific details about using visual schedules and some of the most difficult challenges we had faced. I cried along with the audience as the final video played. The session was over and I felt so proud of myself for doing it.  Sharing my own personal feelings was very difficult, but talking about our boys was easy.
Afterward, many, Moms’ in particular, approached me with questions and requests for more information. I knew then that my mission was clear. I needed to be available for FX families; to spread the word about what our kids with Fragile X CAN DO!  I needed to convey to other parents how much IS possible. Most of all, I needed to spread hope that it would be ok. We now knew that it would. 
Since that first presentation of “Mrs. Rogers Neighborhood”, I have had the privilege of presenting alongside Tracy and Mouse, the ones that mentored me, on many occasions. It is an honor to observe and learn from such experts who have dedicated their lives to helping create quality lives through treatment and support.
Chris, my patient and amazing husband, and I really started to shift our lives and our thought processes in the 2000’s. We started to see the potential in our children, as well as what our priorities needed to be. We began to make a written plan, and to implement many aspects of that plan. We became empowered.
In 2010, the conference was in Detroit, MI.  With every single one I attended, I saw more and more friends and learned more and more good information.  With every International conference I also have a renewed enthusiasm in helping others and spreading hope by sharing our story.  While there, I was a little bit overwhelmed by all of the new technology that had pushed its way into other kid’s lives while I wasn’t looking!  Thank goodness I had a few awesome new friends to help explain it to me!  I met Holly Usrey Roos and Eric and Melissa Welin one evening during the conference.  To this day, we still laugh about the discussion that night and my lack of technical skills.  They have worked so hard and patiently with me, and a friendship has blossomed like no other.  Like many others, this friendship started as a speck, but has grown to be so meaningful.
In 2012, I also had the privilege of going to Guatemala and talking to parents there.  Even in the face of very challenging ways, these parents still had much hope.  The new friendships formed there are genuine and sincere.

Fast Forward to Today
There are conferences held, like the one held in Miami in the summer of 2012, that draw well over 1,000 attendants from all corners of the world. This is due in no small part to the hard work of the many folks that now work for the National Fragile X Foundation. Even though this was my 9th conference to attend (I skipped Washington, D.C. and Atlanta so I could focus on my own boys), it was still very familiar and very overwhelming.  I have come to realize that the learning and emotions are part of the evolution and a necessary part of the puzzle.
Parents are now connected daily by way of social media such as Facebook. They are united through activities that raise thousands of dollars each year to support the mission closest to their heart. LINKS groups (local Fragile X support groups) are established all over the U.S. bringing families together through organized and not-so-organized means (perhaps a FX moms a “ladies night out”). The bond among strangers and the unification of individuals is reaching points we never imagined as we sat around our dining table back in 1995.
Doctors are more educated and actually provide treatment to children and adults with Fragile X syndrome, FXTAS, FXPOI, and many other things that were previously unknown. The future of this field is very hopeful.
I have thousands of friends all over the world that I can talk to whenever I want. We are able to share concerns, tears and laughter over things we have been through or are going through right now. It’s amazing.
So much has changed in the world of Fragile X and it is our duty and honor to pass the torch, to make sure that others know our common history, to remember the ones are that cut the track and then paved the way. It is important not to forget who:

Discovered Fragile X;
Founded the National Fragile X Foundation;
Makes each and every International Conference possible;
Discovered ground-breaking methods for day-to-day functioning of our kids;
Has seen families constantly and cared for them;
Has dedicated their lives to this genetic cause;
Lobbied for monumental legislation like IDEA;
Helped create educational innovations such as “Integration”;
Continues to research and discover new and amazing things about Fragile X;
Saw a need to bring together families and organize support.
Look them up and become familiar with them.  It is our history and we need to know.
All of these things are ongoing, but they had to start somewhere. I was mostly just a spectator, but when I was a participant, it was my privilege.  All of this history is what makes me who I am today. Then, I couldn’t imagine my life with Fragile X.  Now, I cannot imagine my life without Fragile X. Kind of ironic, isn’t it?

Looking to Tomorrow
As I recollect my past and that of my family I am struck by the vast contrast between our lives now and the hardships endured by our ancestors before us. Whether it is the challenges of Fragile X, or suffering, or tragic death…they all teach us lessons. Our story is unique, but it is not different. It gives us perspective. The rewards for being a parent of kids affected by Fragile X are not extrinsic.  My perspective comes with inner accolades.
After 21 years of Fragile X, we are now able to realize that the Fragile X world is only a small part of the grander universe, just one star in the Milky Way. Yet, we have spent almost half our lives immersed in this world.  Sometimes I wish I could just “opt out”, like that first Mom I called. Obviously, that was not the road for me.  I have no idea how long Chris and I will continue to be involved. Only time will tell. For now, Jake and Joe still live at home with us and we have some years left to work before we can retire, so in reality, “Fragile X still lives here”. Our future is still being told and we are still working on the final outcome.  We have our list, and our goals, many of which are checked off.  We will continue to plug away.
As a person, I believe I have grown more than I ever imagined.  When I was young I had a very idealistic view of what my life would become.  I was very goal-oriented, and I still am, but now those goals are realistic and measureable.  My life has exceeded those goals.  Never did I imagine that I would have the patience I have, or the passion for life, or the level of personal satisfaction that I have reached. 
As a couple, Chris and I are stronger than most others we know.  This thing called Fragile X has helped us grow together in a way most will never experience.  We have a unified mission that drives us each and every day.  It’s forever.
As a family, we are committed to making a beautiful life together and going the full distance.  I think we are on the right path.  One of my favorite sayings is, “Your perspective is only as deep as your experience”.  I think we have a pretty vast and positive perspective.
From where I am sitting now, it is so peaceful to look back now.  To see how much we were able to positively affect change in our boys once we figured out what really needed done.  The realization that it was us that needed to change, not the boys.  Once we resolved ourselves to bending to meet them where they were, and working hard to lift them up… became good.  Once we realized how we would fit into their lives…..contentment settled in. 
If only it were easier to help others see through the lens of my life.  If only I could help other parents skip the hard part.  This would be heavenly.  I will keep reaching down to lift them up if I can.  I will keep telling others about how good life can be with Fragile X tagging along.  Chris and I will keep plugging away at giving our boys everything that we can.  It’s going to be ok….we know that now.
I often defer to the words of Mr. Fred Rogers of “Mister Rogers Neighborhood”, as his words give me much comfort:

Very early in our children's lives we will be forced to realize that the "perfect" untroubled life we'd like for them is just a fantasy. In daily living, tears and fights and doing things we don't want to do are all part of our human ways of developing into adults.”~~Fred Rogers