Tuesday, July 25, 2017

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 26 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.




Personal note: I have enjoyed sharing our family’s story during this month of awareness. I continuously feel driven to write and write and write. THANK YOU for reading about our journey. It means the world to us that you care enough to read and learn.

To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld

6 comments:

  1. Beautiful post, may we always have HOPE. Your story is an inspiration to those of us with the little ones ❤️

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    1. I like your hope :) Thank you for your kindness.

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  2. A beautiful story in which hope but without possibilities everything is impossible

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  3. Thank you for this! I literally have "Hope" every single day. But the hope you mention sometimes is tested...this helps. So thanks again...Donna (aka Hope's mom).

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  4. Hope is a word I use and have posted all around my house........and in my mind. Love you guys!

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