DO YOU BELIEVE IN MAGIC?

Magic can come from many places.

There are days when I find it excruciatingly difficult, and it takes every single cell in my body to conjure up the patience, to deal with my two adult sons, both born with a developmental disability called Fragile X Syndrome.  Today is one of those days. It momentarily feels like any magic that was there is gone.

At 26 years old, my youngest son has been my consummate teacher--my measurement of personal growth.  He has strong opinions and shares those with me often, like today. Today, for some unknown reason, he did not want to wear the clothes he had carefully picked out last night.

Years ago, I developed a method for the guys to pick out their clothing for the next day the night before, mostly to save my own sanity in having to do it during the morning rush. But, this morning, all bets were off. So, even though I was not in the mood to deal with it, I pulled out my “ready-not-ready” card and waited.

“Ready-not-ready” is a method that two incredible women taught me years ago when things were at a tipping point in our family’s life. My husband and I were on the brink of “Neverland” as I like to say, meaning that we were at the point of never knowing what to do….and giving up. We needed some kind of life preserver—literally. We had lost hope and we needed someone to help us restore that hope.

Today's blog is not about the "ready-not-ready" method, but about the people that made it possible. Thankfully, we knew the right people for that job—Tracy Stackhouse and Sarah Scharfenaker, or “Tracy and Mouse” as they are known in fragile X circles.  They are never known independent of one another, which is perfectly fine with me because together they are MAGIC.

In 2003, they created an amazing non-profit organization called Developmental FX (developmentalfx.org) simply because they wanted to dedicate their lives to helping families, like ours, all over the world with a wide range of therapeutic needs. Totally logical since these ladies are considered world-wide experts in their fields of OT and Speech Therapy.

They’ve spent the past almost 15 years building a team that has a strong base of knowledge and that shares their philosophy about wrap-around services and a combined approach to treating people. They built a clinic that is too incredible to describe, but suffice it to say that it is magic to the little people that experience it.

Over the many years that we have known these Magicians, I have also been the privileged recipient of a wealth of knowledge bestowed upon me by them. This knowledge has been nothing short of a miracle for me and my husband. Each and every day we use one method or another to help us survive and get through each day. Some days we are even a happy, seemingly typical family.  Knowing WHAT to do gives a parent the power to go on with hope and determination. This includes a method called “Ready-not-ready”. It’s just one of the MANY methods and approaches that Tracy and Mouse taught us to cope as parents, but also to help our sons in a way that is productive and helpful.

Developmental FX has given us something that no other organization has given us—HOPE.

How many organizations do you use every single day that give you that? Oh, there are organizations that do a lot of good…but this one allows something no other does…it gives you tools to use every single day…..to survive.

When our sons were very young, there were days when I wanted to sit down in the middle of the floor, cry, pound my fists to the floor and holler at anyone who would listen about how tired I was…how sad I was….how I had nothing left to give. But, that’s all changed.

Oh, yes, I still have bad days—that’s only human. But, most of them are not because I don’t know what to do to help my sons. Having the knowledge that Developmental FX has given me empowers me to help them learn and grow and for us to function as a family.

Today is Colorado Gives Day, and between now and December 5, 2017, I want to shout from a mountain top, loud enough for everyone to hear about Developmental FX so that folks will fund something special….something MAGIC. No matter where you live, you can be a part of this! It’s for everyone, not just those in Colorado! We want to see Tracy and Mouse and their team continue to help thousands and thousands of other families all over the world just like ours…..

The ones who struggle every day to find hope;

The ones who have fought so hard but are "this close" to giving up;

The ones who live in countries where no one knows anything about fragile X syndrome;

The ones with a newly diagnosed child that feel like the diagnosis will strip away every ounce of determination they can muster.

Click here to go to Colorado Gives (Colorado Gives Day)

This morning, I was knee-deep in a shallow pond of impatience…but two hours later, I feel confident that I have the tools to go on another moment, another hour, another day, another year with the power of knowledge that will guide me forward. No day is perfect, but somehow I know I can go on. It’s all because of two ladies who have shared their MAGIC.

I hope you will share this post so that others can experience the MAGIC too.

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

DAD IS KING

This morning, as I was assisting Joe, our youngest son, with brushing his teeth, he looked up in his usual way to avoid toothpaste running down his face, and concurrently reached his left hand into the right pocket of my bathrobe, knowing my cell phone would be there.  Joe suffers from serious phone envy, and often snatches mine away, then giggles like he’s done it inconspicuously. He gently slides the phone out of my pocket and places the sleeping, dark-screened cell phone to my ear.  He loves to emulate making a call--knowing it can often reap the result he desires.  He generally wants to call someone, even though in real life he has never even dialed a phone or had a full on conversation, except with his Dad, and only on the speaker phone. Sometimes he wants me to call his favorite restaurant, Chili’s, and pretend to place a to-go order. Sometimes he wants me to call the library and request his favorite book. But, most of the time, he wants to pretend call his Dad. 

Joe’s Dad is the world to him—you might even call him a “Daddy’s boy”. He and Dad are like two-peas-in-a-pod. But, this week, Dad is working out of town, so Joe knows we need to call him in order to talk to him. 

I ask my usual question in this situation, “Who should we call, Joe?”

With a mouth full of toothpaste he still manages to answer in a mumble, “Dad”. It sounds more like, “Daa”.

I reply with the phone to my ear, “What should we tell Dad?” trying my best to distract him from one of the most sensory-defensive activities that exists in his day, even though he’s 26 years old.

Joe doesn’t miss a beat and manages to gurgle, “Is King”.

Me, not completely understanding this newly developed phrase, I ask, “Is Dad King?”

Joe says, “Yeah…!” with a strong sense of enthusiasm.

We finish brushing, rinse, spit and wipe his mouth. I reclaim my cell phone, place it back in my pocket and shift Joe toward his hoodie to complete his ablutions for the days’ work ahead. Then, my mind shifts back to a much more chaotic, stressful, sad time some 15 years ago.

Fifteen years ago, Joe was only 11 years old.  Of our two sons, he has most definitely been the one that has taught us the critical lessons of parenting a child born with Fragile X Syndrome (www.fragilex.org), some of which are patience, determination and, the most difficult, a sense of calm. Fifteen years ago, my husband, Chris, and I were knee-deep in a world of hopelessness, frustration, sadness and despair.  Joe was testing every cell in our bodies as parents, as humans and as a married couple.

Sometimes with a child who is severely affected by Fragile X Syndrome, there are behaviors involved, extreme behaviors.  Jake, our oldest son, now 28, has never had many of these behaviors, so this gives us a sense of perspective on the genetic disposition.  But, Joe had the full gamut back then.

From the time Joe was born, he cried, whimpered and expressed his disdain for many things in a variety of ways. Suffice it to say that Chris and I have learned a mountain of methods and approaches to help Joe and, in turn, help us cope and eventually live our day-to-day lives in a semi-peaceful state. It’s taken years and years of blood, sweat and tears to get where we are now.  If you want to read about the details, you can always read, Becoming Mrs. Rogers my memoir about our life. All of the sometimes gory details are there for you to enjoy.

The book also details the amazing people that took us under their Angel wings and taught us how to live and how to help Joe, and subsequently, Jake.  Each process was trial and error, as there are no perfect answers.  Eventually, after years of successes and failures, we honed our approach, and added some techniques of our own.  There is one very effective method that I did not include in the book.  I simply couldn’t find the words to describe this method in such a way that I thought it would be void of judgement or reproach from the reader…and I am still not sure. 

Until you have a child with severe needs, you will never know how desperate you might become. You hold your newborn, innocent, warm, beautiful baby in your arms with a feeling of hope and joy and love. And then, you receive a devastating diagnosis that crushes every single joyful thought you ever had and your direction drastically shifts to desperation. You would do anything to make their world better.  It is utterly the most brutal and devastating news you will ever hear. You attempt to take in a breath, but no air will come. Your body is devoid of life for a split second….until you realize you must gasp even if it causes uncontrollable tears to fester.

So, we did take in deep breathes, day after day after day. We learned and listened and tried. Chris and I tugged and pulled at each other, and eventually, embraced our fate. It was never easy and still isn’t.  Especially for a Dad. He’s an amazing Dad that works his tail off every single day to provide for us. He works at a very physical job, but still finds energy to give us, and especially Joe.

As we were still in the phase of trying to find every possible means by which to make Joe’s world more manageable, and learn ways to help him cope and exist in our world, we also discovered something bigger than we ever expected. An unconventional way to help build trust and help Joe physically at the same time.

One day all those years ago, Chris came to me and asked if I ever thought about the physical discomfort that our boys must feel due to the extreme stress they experienced from the world around them? I said, yes, I did, but there did not seem to be any clear symptoms.

I often had some pretty intense aches and pains due to the physical stress that my body endured while caring for these two big guys. Nothing felt better than a white-knuckle neck and shoulder rub to ease the piercing pain from a knot in my shoulder blade. My favorite "rubber" was Chris because he had such strong hands. I never seemed to give him as good a rub as he gave me because my hands didn’t have the same strength.

Chris said he wondered if, as tense as Joe was on a typical day, he would tolerate a back rub to help him relax and relieve some of that tension. I questioned whether he would even let Chris touch him for more than 60 seconds…he loved his Dad more than anyone, but touching his back, I doubted.

That night, after Joe had had his hot shower, he and Chris came downstairs where I had laid out one of my exercise mats on the floor in front of the television. Chris had waited to help Joe put his shirt on in hopes of postponing until after the trial rub. Joe was outwardly confused. I suggested he lie down on the mat, an act that was totally out of our newly established routine, causing some verbal backlash from Joe.

Chris talked calmly, something we had both been working on, as it didn’t come naturally to either of us. He asked Joe to lie down again, saying that, “Dad is going to help you”. After a few more words of gentle coaxing, Joe did finally lie down on the mat. Our usual “Jeopardy” programming played on the television as Chris took a moment to warm up his hands. I could see a bit of hesitation in this masculine-and-completely-homophobic man that I loved. This was NOT something he was used to or familiar with….ever.  I sensed his inner struggle between being a “man” (and men don’t touch men in his mind), and desperately wanting to help his son…no matter how much it cost him.

Chris placed both hands firmly and silently on Joe’s back. Joe lifted his head a bit not knowing exactly what was going to happen. It was difficult to watch as a Mom and the nurturer in the family. I don’t think anyone in the room was really breathing at all.  Joe relinquished a bit and sunk into the mat a little at a time. We all blew out our breath.

Chris began to rub with guarded pressure at first, and increased it bit by bit. After a short 60 seconds or so, Joe was unable to tolerate the situation, and sat up like a shot. Chris helped him with his shirt on and Joe made his way to his usual spot on the couch, readying himself for his weighted blanket. 

The whole 60 second experience was a success in several small ways. Joe now knew what the words, “Dad is going to help you” meant, and he tolerated something new and extremely difficult for his body.

Dad had some pretty huge accomplishments that night, too. He did something completely out of his comfort zone, and he gained an incredible amount of trust from his son that no one else on earth had.

We continued this exercise every night for God-only-knows how long. At least until a point where Joe would actually gain some physical benefits from a back rub. Chris talked to him in a calm voice throughout each massage, and felt many knots that often took time to relax. It even got to the point where Joe would close his eyes and melt into the mat until he was almost asleep—a monumental achievement compared to that first time.

Over the years, we have shifted methods and approaches, finding some had long-lasting effects that didn’t require ongoing use, like this one; and others that we still use every day. But, these boys continue to surprise us every single day.

Just last week, I was traveling and Chris was home with the guys by himself. He told me about something that nearly brought me to tears. The reason is because it shows how incredibly far-reaching some things can be, and how far our guys have come.

On this afternoon, Joe comes into our bedroom where Chris is changing clothes. In order to fully understand the depth of our world, you must know that Joe is capable of speaking about 100 words, and most days it’s much less. Anyway….Joe had seemed a bit restless on this day, according to Chris. He seemed to want to say something but it seemed he could not find a way to muster the words.

Joe bounds onto our bed and sits cross-legged. This in itself is not unusual, but Chris sensed he needed something.

Chris says, “Joe, do you want something?”

Joe says, “Yeah!!” with a certain amount of decisive exclamation.

In an unusual act, Joe reaches for Dad’s pillow, places it at the foot of the bed, and lies down on his stomach!

Chris not believing what he was seeing, was dumbfounded and speechless for just a split second until he said, “Joe, do you want a backrub????”

Joe exclaims, “Yes!”

A chuckling, open-mouthed, stunned Chris says, “OK!”

This HAD NEVER happened.  Not only that, but it is rare, and I mean rare, that our guys will even tell us what they need! 

Chris warmed up his hands, and even though he was tired from a full day or household chores, he relaxed and gave his son what he needed. He gave his son something that was incredibly difficult for him to give one day a long time ago, but which now is just a part of his life.

This is why, in Joe’s eyes, his Dad is King.

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

I'm Finding It Difficult to Cope

Last night, the boys and I retired to the basement for our evening routine. After we were fully settled with our cozy blankets, remote and snack, I realized that I had left my cell phone upstairs. For just a moment, I considered unfurling from the blanket just to retrieve it, but decided against it. It wasn’t the first time this had happened…and, somehow I survived. We enjoyed watching some football, then Charlie Brown before the guys were ready for bed.

I got them all tucked in, and returned to my hopefully-still-warm spot to shift to “This is Us” and some quiet moments to myself.  Dang it! I, again, left my phone upstairs.  I paused the program, unfurled, and retrieved it.  As I browsed the home screen I realized that nothing earth-shattering had happened.  No one needed me.  I survived. This was all ok. This has been my coping mechanism for several months now.  No overwhelm by the likes of technology.  Very little by way of Facebook or Twitter.

Technology is one thing as I age that I have difficulty coping with, so I’ve decided to take it in regulated doses.  Just for grins, I’ve dedicated myself to trying to talk to friends on the telephone (yes! LIVE!) once a week.  Yes, I still text, but, I need some connection to people’s voices.  With all of the "social" media, there can be a real lack of human contact!  In fact, I predict there will soon be a severe shortage of oxytocin, the chemical released in our bodies when we receive a hug.  I refuse to be a part of that world!  I NEED hugs!!

I’m so thankful that I was born with, or learned some coping skills that help me every day.  They come in all different ways and means.

When I was a little girl, maybe 4 or 5 years old, there were rare times when I would get into trouble for one thing or another. Discipline would be issued; a swift spanking followed by alligator tears, then I would be condemned to my room where I was told to “think about what I had done”. I would lie on my bed, hands crossed underneath my head, and think about what every other person in the world must be doing…while I was suffering what I was sure was the worst and saddest time ever in my life to that point. I imagined that other kids were out-of-doors playing games or riding their bikes. I imagined that people were laughing and going about their happy lives while I was suffering a fate no one else on earth could possibly be facing…alone.  I had no intention of thinking about what I had done wrong. I preferred to think about how awful I had it while every other single person on the planet had happiness.  Silly, I know, but this kind of thought process, I believe, was my own way of coping. It helped me get through those few hours until I was released once again to play another day. Not bad coping skills for a 5-year-old!

As I’ve grown and new experiences have come my way, I’ve had to adapt and learn how to cope with both good and bad.  I suspect most human beings have similar situations. But, now I find myself in the midst of what I call the AGE GAP! This will require some extra refined coping skills. So many things to cope with.

The Age Gap seems like it crept up on me without any notice.  It’s like this physical place between the future and the past.  When one tugs at me the other relinquishes, and visa-versa.  I’m developing ever-new ways of coping with this one.

According to some news reports, it seems that human-kind is obsessed with erasing the facts of the past and creating a new narrative.  Mind you, there are lots of parts of my past that I wish I could erase, but on the other hand, I find it difficult to find time to even dedicate to those issues that I cannot change. So, I cope by ignoring. One decided thing I did to help was to “cut the cable cord” back in February.  Believe it or not, it was easier than I thought it would be! Even my two routine-oriented sons have not missed it one bit!  Here I was thinking we would keep it for them!  Boy, was I wrong! Life goes on without a constant sound of cable news in the background. I’m pretty sure someone will let me know if the day of my birth is erased. 

Despite all my efforts, another issue of future events constantly invades my day-to-day, forcing me to pull out every coping skill I have to muster……holidays.  The onslaught of Christmas regalia in September causes a whole new group of problems to arise in my household. 

I have two amazing sons that both happened to be born with a genetic developmental disability called Fragile X Syndrome.  They’re adults now, so we’ve been around the block more than a few times, but holidays fester up some of the old challenges.  Christmas can have its own set of challenges for our guys; what gifts to buy someone with limited interests and still make it fun; how to incorporate so many new and unfamiliar things and situations into the already-established routine; arming them with coping skills while everyone around them is stressed out and excited; how to help them cope with all of these things while still coping ourselves. 

Besides all of that, they both work at retail establishments so you can guess what happens with regard to holidays in those environments….yep!  Stuff, stuff and more stuff.  Once the summertime paraphernalia has been clearanced, they make way for holiday garb.  Don’t get me wrong…I’m not anti-holiday.  I’m just pro-timely holiday stuff.  This challenge brings forth a whole new approach to coping for my husband and I. Without good coping skills we would surely be admitted to a mental hospital.

As a matter of routine, both boys have learned that once Halloween is over it must mean that we skip directly into Christmas.  Thanksgiving is just a dinner in their mind--nothing to really look forward to.  I get it that kids love Christmas.  I get it that most of society spends a huge majority of their year preparing for one single day, or two single days…..I just can’t spend 1/3 of the year hearing about it!  Even though our sons are verbally limited to a mere estimated 100 words, “Christmas” is certainly one of them.  Constantly.  One of them.  Repeat. My husband, Chris and I have become totally unconventional when it comes to Christmas in an effort to keep ourselves at some level of sane.

Last year, by the time we got to December 1^st, our oldest was beyond his ability to really cope with the anxiety associated with such an exciting upcoming event.  I did everything I knew how to do; I prepared visual calendars exposing only one week at a time in order to try and help him slow down time; we waited to put up the tree until after December 1^st, when normally I would put it up Thanksgiving weekend. Nothing seemed to help.  Both guys were losing sleep over it which meant Chris and I were losing sleep over it, too.  We could not slow down time enough. 

In some ways, it’s a blessing that our two sons are on the severe spectrum when it comes to Fragile X Syndome (www.fragilex.org) because this allows us to “manipulate” events.  So, that’s what I did.  I created a new calendar showing that Christmas would take place one week early.  We had to get it over with.  Then, we booked a week away in the mountains during Christmas week to enjoy some down time.  I know…..I know….the religious day and all…..but, for us, we had to help our sons.  They do not understand all of that, but they do understand the word “Christmas” and know that a lot of excitement correlates with that word. It was glorious and relaxing.

The regalia has already begun in stores as expected and so has the verbal perseveration over “treats” (tomorrow, thank God). Our coping has already begun, too.  I’ve booked the same week away and we look forward to it.  This year I plan to put it on the visual calendar once December rolls around. My favorite holiday is Thanksgiving, so I’ll cope by savoring a long weekend and time spent in the kitchen.  We even expect some family to come by, so this will add to the festivities.  I cannot change the course of events as they happen in society, but I will do my best to pull out all of the coping skills and hopefully, enjoy some small moments of joy as we go along. 

The coping also continues just about every day as Chris and I endure the Age Gap, especially when it comes to retirement. This is a tough subject to even write about…believe me.  There is nothing good that comes from aging when you have kids with disabilities. We are rounding the corner and are within 10 years of that event.  Some of our friends have already retired. Having two sons that will always need supervision, with or without us, is a gut-wrenching fact. Unlike many of our friends, we have special circumstances that will surely take our retirement on a different course than any of them. The anxiety that this produces is more than I can even think about in one sitting.

I’ve written in much detail about our plans for our sons in my book “Becoming Mrs. Rogers”, so I won’t rehash that. The fact still remains that we continue to age and the transition grows closer and closer.  It's a' comin'! Our priority list grows longer and longer. It’s times like these that I feel extremely blessed that I’ve learned how to cope with such a monumental task. I have a very organized mindset. Chris and I still have the physical-ability to work, and boy, do we work. We have the means by which to do something.  So, we will continue to put one foot in front of the other.  We will continue to think about the end goal and hope that we can achieve each step on the journey that lies before us. This one thing will be more and more of a priority for us as time goes by. 

Somehow in all of this chaos and coping, I hope we can enjoy each day and relish our time with friends and family.  I think we can. We are here right now….right this minute….we just need open our eyes to see the small moments of joy.

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

Imperfect Hope-Living with Fragile X Syndrome

July is National Fragile X Awareness Month…..and there are a lot of things that you will NOT learn about Fragile X Syndrome by looking at the web, Facebook or Twitter.  To learn the real facts about it, go to the website www.fragilex.org. That's what this month is all about...learning something you may not have known before.

Hope is not a word that my husband, Chris and I say with casual disregard.

I clearly remember the day we got the diagnosis of Fragile X Syndrome for our oldest son, then 2, and the subsequent same diagnosis for our youngest. All hopes that my husband and I had for a fairytale future went out the window.

In the early years, we both walked with a permanent bend in our spines as we practiced walking our son; our hands in his little hands held over his head, holding his little body erect, hoping he would take his first steps at the prescribed age of 12 months. The long awaited moment gradually came at the age of 17 months, long after his "typical" peers.

Symptomatic of fragile X are the speech delays. I prayed, wished and hoped with all my might for words to spill out of my determined son’s mouth. I longed for him to utter the words, “I love you Mommy”, or “Mama”, or something……anything.

There were daily, physically exhausting elements of fragile X that beckoned every ounce of determination and patience in us—7 long years of sleeplessness; 10 years of insurmountable potty training…we thought, all testing how much we loved our sons.

The beginning of the dreaded potty training

As the neighborhood kids rode their bikes up and down our street, our youngest, Joe, watched with curiosity from the window. I saw the hope and excitement in his eyes while my heart tore into a million pieces, knowing his fragile motor skills would not cooperate with such lofty goals. Later that year, we bought him a bike with training wheels, assisting him until our backs arched in a semi-permanent state from “side-steering”. The very day he finally learned to pedal that bike years later, a tear welled up in my eye as I saw one of those kids drive past. Joe never really learned to ride that bike independently.

One of the first moments of Joe on his new bike--standing still.

Little league sports were everywhere as the years passed and our two sons grew. We were on a course of therapeutic swinging and deep pressure in and attempt to calm and gain some semblance of focus. Bouncing a ball was out of the question.  Following rules and directions were not words in our vocabulary. Hope had disappeared it seemed.

The very idea that our sons were going to someday be adults….without us……kept us awake at night, and worried during the day.

Our boys continued to grow and develop and learn and love.

Their parents continued to grow and learn and acquire acceptance.

And then they did become adults. All of the distant worries and faded hopes disappeared. Our sons were still grown. In fact, they grew into happy, productive citizens of their community, just the way our modified plan exclaimed. There is no cure for Fragile X Syndrome—it’s a lifelong diagnosis—nothing has changed in that regard. But, our view of hope has changed.

Looking back, I realize that hope was with us all along. 

When the words spilled out of the Doctor’s mouth, she was right there with us providing support.  She offered us resources, and help and hope.

When Jake finally said his first word at the age of 6, we knew why and how because a very special Speech Therapist and Occupational Therapist (OT) had taught us.  As Angels do, they took Jake under their wing and helped him, step-by-step, bit-by-bit, giving us more hope.

With each improved motor skill like pedaling a bike, or bouncing a ball, or simply learning to regulate their bodies, hope was always all around us. Kids from, what seemed like out-of-nowhere, appeared to guide our sons to love basketball and baseball….and offer friendship. Tiny baby steps of improvement were there—we just had to adjust our eyes to see them.

Jake with his friend, Daniel, who guided him in basketball for years.

Other “Angels” like Teachers, Para’s and friends provided sprinkles of hope, day after day, year after year.

We are far from finished with daily challenges, but we have knowledge and resources. We have hope each day—imperfect hope—a hope that allows us to continue moving forward, knowing that it can and will get better.  Since that dark day 28 years ago, life is so much better than we ever imagined it could be.

We have built a wonderful, caring world around our sons with friends and neighbors; family and professionals; all working with and loving them.  No, they will never love our sons the way we do--but, that’s how our imperfect hope works.

Now, here we are in the land of grown up, dependent children—the unknown future--wondering if our sons’ futures will evolve to be what we envision. We’ve already learned that any attempt at a perfect hope was a dream derived from convention. For me to have wished that Jake would come right out and suddenly say, “I love you Mommy” was not realistic. What DID happen was perfect for him……a miracle for me.

I submit that if I had a nickel for every moment I wasted on worry and despair, I would be wealthy. Most things I worried about turned out in the end. So, now should I revert to that old routine after all of these years of learning?  Worry about things that I can do something about? Worry about things that those consummate Angels will help us with?

Chris and I cannot predict the future—no one can. Looking back at all of these moments when we questioned hope, and later, clearly saw the positive outcomes, has helped us see a continuous flow of hope. It gives us precious perspective that we need to carry us through the tough days still yet to come.

For those families that are just beginning their journey, I want you to know that THERE IS ALWAYS ROOM FOR HOPE.  It’s there…..you just have to open yourself up to see it clearly.

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

The Major Issue with Fragile X Syndrome No One Seems to Talk About

July is National Fragile X Awareness Month…..and there is one major thing you will NOT learn about Fragile X Syndrome by looking at posted facts on Facebook or Twitter.  For all of the scientific facts or to learn more about fragile X syndrome, please take a moment to go to www.fragilex.org.

In my one-and-one-half hour drive to work this morning, I was able to fully contemplate every aspect of the subject matter for this blog.  I mulled over the many chapters of my life and how it relates to the one thing that no one seems to talk about when it comes to fragile X syndrome—marriage.

In 1985, when Chris and I made our way down the perfectly groomed path of his parent’s back yard to recite our nuptials, I somehow doubt that any one of the more than 100 friends and family gathered were wagering on whether or not we would have a son or daughter affected by a genetic anomaly called Fragile X Syndrome.  How could they?  No one had even heard of it back then!

As Newlyweds, all we thought or talked about were goals, dreams and predictable difficulties yet to come. We shared thoughts on future disciplinary methods for children yet to come, what would bring each of us joy, financial goals, work/job goals, what we envisioned our future to look like and a thousand other things.

Five years later, as we both looked down into the angelic eyes of our first-born son, we still had no clue what we were in for. We shed tears of joy over his arrival and reflected deeply into the bright future that our progeny presented. We dotted over his every move and milestone, until those milestones were delayed and delayed, causing his worried parents to sink into an unfamiliar life of question and uncertainty.

Twenty-six months later, our second son was laid in my arms, and again, I wept tears of joy, but also tears of concern. I passed the little, warm, innocent creature to Chris, and watched as small wisps of fear appeared in the worry lines of his face. Virtually days later, our entire existence would change.

We heard those hallowed words “both of your beautiful boys have a genetic developmental disability called Fragile X Syndrome”…..and there was NOTHING we could do about it.  There was no cure.  Our married life had shifted into a whole new dimension with this news.  We were forced to question every fundamental moral and life value that we had previously laid out. 

One new assignment was laid in our laps right away.  We had to learn how to cope while learning how to grieve.  It was immediately obvious that I would grieve at a different pace and in a different way than the one person that I thought I knew better than anyone.  I grappled for information and asked questions while Chris stayed silent, taking in the realities. We had to figure out how to keep it together for the boys, but still support each other, even though we were in totally different places emotionally. The reality that very precise, minute, little dreams were dying one-by-one before our eyes, made the task even more daunting.  How could we possibly overcome so much devastation and do it together….and stay together?

For the first four years or so, we merely existed, not comprehending the extent of the implications some microscopic gene would play in our life. I found myself crying over small things, but didn’t always understand what I was crying about. Chris stayed strong and upright, but inside he was angry. Over the years, we each did progress through the entire grieving process at our own pace, doing our best to support one another. How we did it, I am not completely clear on, but I think a strong love surely helped.

I cannot put my finger on any specific reason that we’ve made it 32 years. I can point to some coping skills that we’ve eased into naturally, as well as some things that I, personally, would attribute to our wedded longevity.  We, of course, are not perfect, just like all couples. We have good days and bad…but more good as the years go by.  We have squabbles, compromises and miscommunications just like everyone else.  But learning each other’s rhythms has certainly added to a positive day-to-day life.

It can’t hurt that we met each other in Mrs. Johnson’s 7^th grade French class (for full details on that story, click here The Lost Chapter).  Having 8 years to get to know one another before we were married didn’t hurt. By the time we got married, we really knew each other pretty well! Now, we own and run a company together! Yes, we see each other every day and work together, too!

On the jobsite  (on our Anniversary no less!) as we
run our commercial plumbing company together.

I have to say that one thing rings pretty clear when it comes to our happiness as a family despite fragile X….finding small moments of joy can carry us through those tough spots.  Once we learned how to see these small moments of joy, we all woke up and were able to see the blessings instead of the sorrow, the devastation, the sadness.  Small moments of joy can be found in the strangest places.

Sometimes, during a rough patch, I’ll head into my peaceful place….my kitchen. I find that doing some mindless chopping or stirring or measuring brings me back to an even keel. I’ll open the refrigerator and pull out some Italian sausage, some hamburger, some green pepper, onion and celery, and lay them on the kitchen counter.  I’ll turn toward the pantry and gather a few cans of pureed tomatoes, some tomato paste and a handful of different herbs. After a few minutes pass, Chris appears right beside me wielding his favorite chopping knife and a cutting board to serve as my sous chef.  No words are spoken. We each enact our own steps as if to follow a well-choreographed dance that we’ve done many times before.

The aroma begins to fill the house. The table is set and wine is poured. We calmly sit together as a family. Plates are heaped with noodles (sometimes homemade if we are all feeling particularly in need of comfort), then ladled with sauce. Sprinkles of fresh parmesan are dropped on the surface like little snowflakes. The boys eat their meal in the characteristically fragile X way, with the fervor of a famished animal, wiping their faces and leaving the table. Chris and I are left to enjoy the fruits of our labor and a glass of Chianti. This always seems to incite calm conversation followed by settled nerves.  It’s a small thing, but for us it’s what gives us joy and resolution. We can come together over a delicious meal and approach whatever is hovering overhead in a more approachable mood, together. We seem to have some of the most productive conversations over a meal we’ve prepared together.

One of many instances where we share a special meal together--my birthday.

I realize how incredibly lucky I am to have a life partner that supports me no matter what the challenge, and I him.  I have a best friend that I can lean on or cry on whenever I need to.  No marriage is easy, I realize.  There are tough times in every life. There are days that I curse him and he curses me.  Let’s be real here. We are human. We have all of the normal married life stresses, along with one additional, huge element.

Having a devastating diagnosis of Fragile X Syndrome for both of our sons has added a huge layer of stress, responsibility, a shift in our dreams and hopes, financial hardship, an uncertain future, and yes, daily frustration. We are in this life together for the long haul.  Nothing is even close to the way we dreamed it would be in those early years……it’s better.

During this month, I will share our vision for the future as we face difficult decisions.

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers

What the Facts Will Never Show About Fragile X Syndrome

July is National Fragile X Awareness Month…..and there are a lot of things that you will NOT learn about Fragile X Syndrome by looking at Facebook or Twitter.  Let’s start with the things you will learn by going to the website fragilex.org or by reading posts from people on Facebook or Twitter.

-Fragile X Syndrome is the most common inherited cause of intellectual disability and autism and can range from mild to profound impairment.

-The gene responsible for Fragile X is called FMR1 and is found on the X chromosome. Everyone has the FMR1 gene on their X chromosome

-The FMR1 gene was identified in 1991.  The FMR1 gene makes a protein (FMRP) that is important in brain development. Individuals with Fragile X Syndrome (FXS) have a deficiency of this protein.

-Mutations or changes in the FMR1 gene lead to developing one of the Fragile X conditions.

There are a myriad of other things to know factually and scientifically about this genetic developmental disability, so I hope that some percentage of you will take advantage of the onslaught of information available during this month to really learn about Fragile X syndrome.

I consider myself to be highly qualified to speak on the subject due to the fact that I have two adult sons that were born with Fragile X syndrome.  Somehow, 26 years of living with it makes me a certified expert….or something of that nature. 

Sometimes, I find much of the information on the subject to be equivalent to blah, blah, blah, blah…..blahhhhhhhhh.  All of the scientific jargon is well and good, but it doesn’t get to the real picture of what our life truly looks like.  For that, I need to dig deeper and take a chance by opening up myself so that you can glean, perhaps, even a small taste of what it’s like day-to-day.

There are good days and bad days, much like every other human being on the planet.  But the bad days can be really bad.  Behaviors have been a big part of our life, although they have dissipated as our sons have aged.  Sleep problems are also common in children with the full mutation of fragile X, which in turn, causes the parents to be sleep-deprived and cranky.  Stresses about the children’s needs and the financial means to meet them are ongoing.

As a couple, our worries are unlike any other couples that we know—they are far-reaching, and will never end until we die.  Our children will be our responsibility until that time; day……………and night. We will likely never be “empty nesters” in the true sense of the word. Having a night out together as a couple can be a real challenge, let alone a weekend away.  Imagine…..finding a “sitter” for two adult men, ages 26 and 28 years.  Not an easy task.

Getting our sons jobs, helping them in everyday tasks, keeping them safe, coordinating appointments, mastering technology so that we can try to stay ahead of whatever device is necessary in their routine, and on and on and on and onnnnn…………..it can be overwhelming and exhausting.

But……we’ve found ways to cope with all of it.  It’s become our way of life and we’ve managed to create a pretty nice life at that.

In the midst of all of this lack-of-what-we-don’t-have, let me also tell you what my husband, Chris and I do have that facts will never display.

We’ve become members of a society that no one wants to join, but once there members are glad to be a part of. As a result of some stupid gene that mutated without our consent, we now have friends all over the world that I know we could reach out to on any given day, make a request, and it would likely be met with the words, “How?” and “When do you need it?” We share a special bond.

There have been many opportunities for our family to meet other families in smaller venues; more intimate opportunities like the one we just left.  Our family just spent 5 glorious days with two other families, in the beautiful splendor of Montana camping and enjoying every moment together. When we were together as families, these friends never asked why our sons do this thing or that. There was never any question about what kind of disability our son has, or why they are on a certain medication, or why they might open the RV entry door appearing solely in their underwear.  Nothing was strange.  No explanations were needed. No looks of disdain or embarrassment were exchanged between parents. It was so comfortable, like my favorite pair of aged, well-broken-in shoes.

Our children never felt weird around each other, never needed to have constant interaction, or even say a word to each other to know that they were there….just being themselves.

A simple 99 cent beach ball provided hours and hours of fun in the campground swimming pool for seven kids ranging in age from 10 to 28.  No questions were asked. The directions were simply understood and everyone was in the same zone. The feelings of joy abounded as each child did his or her part to play the game of hitting the ball back and forth. Each adult beamed with a smile from the skills that their own child and those of others, exhibited.  Perhaps there were newly found skills, or perhaps they were familiar.  It didn’t matter. A warm relief rose up in me knowing that my sons were having so much fun. It didn’t matter what genes they were born with. There was no attention paid to the things they couldn’t do. The focus was simply on fun.

7 kids and 3 Dad's with our 99-cent beach ball

During several sessions of swimming and beach ball hitting, another beautiful thing happened. Other kids without fragile X syndrome saw how much fun we were having as the ball volleyed back and forth between kids and parents, and they wanted to join in, too. There were small kids and even teenagers that paid no attention to any genetic developmental disability—they just saw fun and wanted to be a part of it. They were just being kids.

We shared three meals a day together, accommodating everyone’s taste preferences, without incident. Bedtimes were flexible based upon each person’s personal routine (routines are critical in our life!). No sacrifices were made. Parents helped each other’s kids with mindless effort. Stories were shared around the campfire as heads nodded in familiar adoration.

The daily feeling of anticipated-explanation and necessary definition-giving conversation that the public requires were absent during this 5-day trip.  There was no need for these dreaded words. It was all unspoken, familiar experiences. THIS was the antidote that we all relished.

This morning, we gave hugs, elbow-fives, high fives, and hugged again to close this visit of friends that came together through a challenging, devastating genetic developmental disability. We packed up the last camping chair, and prepared “Rocket” (our RV) for the journey home.  Then, we waved incessantly until we could no longer see the physical presence of these dear, special friends.

Now, as Chris skillfully guides “Rocket” southward toward home, we both feel content and fulfilled. This visit was just enough of a recharge to get us through whatever may come our way, until we can do it all over again.  It reassures us once again that we are never alone. The importance of this one thing is larger than I could ever portray.

Our older son receives a long-awaited, but promised, "hoodie hug" from our friend

  

Next month, we will celebrate 32 years of wedded bliss and we will continue our effort to face each day with resilience, love and compassion. We will do our best to provide our adult sons with a high quality of life through focus and determination. In many ways, I think it’s what pulls us all together even closer. We are not perfect, but we do our best most days. It’s not easy when a marriage has the added stress of a fragile X gene thrown in. As July ticks quickly by, I’ll share a few of the experiences we’ve endured in our marriage…………… so keep reading.

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers