Tuesday, July 17, 2018

You Can't Do It Alone

I just returned from a quick trip to Cincinnati where I was privileged to attend the banquet at the bi-annual International Fragile X Conference. It was a treat getting to see so many of my old friends, and even meet some new friends. I am often taken aback when I meet someone new and they start by saying, “You are such an inspiration!” A feeling of embarrassment washes over me.

Webster’s Definition of inspiration
 a divine influence or action on a person believed to qualify him or her to receive and communicate sacred revelation
b the action or power of moving the intellect or emotions
c the act of influencing or suggesting opinions
a :
the act of drawing in; specifically the drawing of air into the lungs

I don’t mean to seem ungrateful, but I often just want to crawl in a hole when I hear that! Not at all because I’m not glad to have been, perhaps, a role model, but because I don’t feel the compliment is warranted. After all, I am just a Mom like most of the people who tell me this! I make mistakes on a daily basis. I make bad decisions that I regret. I screw stuff up that I can’t take back. I’m just doing the best that I can. AND, I also had a lot of help getting to where I am today. Everything we are today is because someone taught us what to do.

Many of the people that helped me survive a diagnosis of Fragile X Syndrome, the most common form of genetic autism, for both of my precious sons, are the ones who are an inspiration.  They are the ones that need to be thanked for giving me the communication that allowed me to have 'sacred revelations'!

One of the most poignant revelations that my husband and I reflect on almost daily is one that I wrote about in great detail in my book, Becoming Mrs. Rogers (turn to page 129 in your books). If you haven’t read it, check it out on Amazon (Becoming Mrs. Rogers).

The fact is that every single hurdle we’ve faced has been approached with fear, but overcome with determination and tools.  Those tools are the product of someone who passed them on to us. We were and are just the delivery system--the messenger!

From the moment we were diagnosed with Fragile X Syndrome in 1991, there was an amazing Dr. right beside us, Dr. Randi Hagerman, helping us cope with medications or advice on where to look next. As time went by, we were blessed with a new Doc, Dr. Nicole Tartaglia at Children’s Hospital here in Denver where we live, again, supporting our every need.

From the time our boys started school, we had some amazing bus drivers, paraprofessionals, teachers, therapists and administrators dedicated to helping our sons move forward in their learning and their lives. Sure there were those with less than perfect methods, but the ones that stood stead-fast by our side made up for the short comings of others. Nothing in the world is perfect.

As we progressed through the years with difficult questions about coping and calming and toileting, Dr. Karen Riley was there, along with Dr. Marcia Braden, offering their expertise based on years of experience with others facing the same challenges we had.

From the moment we were told that our sons needed intense OT and Speech therapy, amazing therapists like Tracy Stackhouse and Sarah Scharfenaker (aka “Mouse”) of Developmental FX (http://developmentalfx.org/) were there. They taught my husband and I methods and approaches that we will use still today after many years…and we continue to learn. I believed in their philosophy so much that I’ve served on the Developmental FX Board of Directors for 15 years!

Knowing that there were people in our world to help us, made us feel less alone and capable of helping our sons get through the toughest day. It has taken a lot of people with a lot of expertise to help us make it to where we are today.  The journey is not over, so we will continue to need help! But, those helpers will not be there forever. We are now realizing this. It’s a tough reality to face.

I admit it…I have taken some of these helpers for granted. This fact became quite clear to me when Mouse recently announced her retirement from day-to-day treatment for families. She’s planning to retire in December, 2018, and this will be a sad day in the Rogers Neighborhood. Mouse is still planning to give of her time to a world that she has so generously dedicated her life to, but it will be an abbreviated schedule, reserved solely for special projects. One of these special projects will be working alongside Tracy on some long overdue projects, including a book on the day-to-day strategies used in working with children and families affected by Fragile X Syndrome (FXS). I, personally, cannot wait to read this!

Damn them all for wanting a life of their own! Right? What will we do when every one of them decides to retire? I can’t bear the thought. There are brilliant newcomers being trained as we speak so don’t fret.

All of this has made me think about how much and what a huge influence they have had on our life! THEY are the inspiration. They are the ones that influence action, and communicate sacred revelations that influence our day-to-day life.

They are the ones who dedicate their lives to the betterment of ours.

They are the ones that move my intellect closer to being able to cope with any challenges that come my way.

They are the ones that push my emotions toward hope.

They are the ones that influence or suggest opinions that reflect the very best in the field of Fragile X.

They are the ones that allow ME to draw air into my lungs day after day after day despite some of the challenges that cause me to drop to my knees and beg for answers.

During this month of July, also named Fragile X Awareness Month, I plead with you to think about those people or organizations that have truly helped you through whatever journey you are facing.

If you can’t give money, give your time.
If you can’t give your time, create something to donate to their auction or their cause.
Show them that they mean something to you.
Show them how much they have given to your life.
Show them how much they have helped you to make it to today.
For that help may not always be there, don’t let it slip away.
You cannot do it alone.

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