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 or her book “Becoming Mrs. Rogers-Learning to Live the Fragile X Way”, please visit www.mrsrogersworld.com