Thursday, May 29, 2014

Be a donor!

This morning while doing a quick scan through my newsfeed on FB, I saw that two friends had both shared a link to a blog. Neither wrote any description of the shared link. I usually don't look at links that don't have any indication of their contents, but I did this time. The link was to a post about a couple in Canada trying to raise awareness of organ donation. The man (Jim) has been awaiting a heart transplant since January 2013....2013, that's seventeen months! That's an eternity when waiting for a new heart.

Many of you who know me personally, know that the topic of organ donation, especially heart transplants, is one that is particularly close to my own heart. I've been thinking about this couple all day. I know their story, I've lived their story. I know how hard it is to terrifying it is to not know if your loved one will receive a new heart before time runs out.

In 2001, when my own dad had exhausted all other medical options to save his failing heart, he and my mom traveled 3 hours from their home to undergo transplant testing. To be placed on the waiting list, at least here in the US, your heart has to be in very poor condition, while the rest of you has to be in very good, almost excellent condition. It's a grueling few days of testing. Then comes the meeting with the transplant team to discuss your results. My dad was given two options. Option 1 was to stay in the hospital, the team would keep him alive, and his name would be placed at the top of the waiting list for his blood type and overall body size. Option 2 was to go home, have his name placed at the bottom of the list, and likely die waiting. My dad, the thinker that he was, needed time to process what was being proposed; he told them that he had to think about it. Ha!

To make a long story short, he decided to stay in the hospital and 4 months later he was lucky enough to receive a new heart. At that time, there were 25,000 people waiting for a new heart in this country. One thing we learned pretty quickly is that checking that box to be an organ donor on your drivers license doesn't really do all that much. At least, it didn't then. It really comes down to the family. It is so important to make your wishes known to your family if you wish to become a donor. Ultimately, they are the ones who are there and can make that decision should you die. So please, consider becoming an organ donor and make those wishes known to those closest to you. You can also register with your state's organ and tissue donor registry by visiting:

Tuesday, May 27, 2014

Blog tour.........Becoming Mrs. Rogers

I'm thrilled to help in promoting Cindi Rogers' new book, Becoming Mrs. Rogers, by participating in the blog tour for the book. It's now available for purchase on here.

Cindi, Chris, and their two boys were the very first FX family that Doug, Grady, and I met in-person after receiving Grady's fragile X diagnosis. That interaction provided us with hope, hope, and more hope. Seeing the high quality of life that Cindi and Chris built for their boys showed us that we could have a happy-ever-after kind of life too. Now you can share in their journey by reading Cindi's book.

This book was a labor of love for Cindi, as well as for her husband Chris. Becoming Mrs. Rogers is a memoir of sorts about her life (and Chris') in dealing with the birth and subsequent diagnosis of fragile X syndrome for their two boys. The timeline travels from birth to present day and covers lots of different issues like school, behavior, therapies and day-to-day life.  It will take you through some downs and eventually some ups, only to come out with moments of joy and hope.  It was an emotional journey for Cindi while writing it, for Chris while reading it, and for you, too.

Please consider reading it, and/or sharing it with others in your life that might benefit from such a story!

Becoming Mrs. Rogers is the true and heart-felt story of one couple’s journey into acceptance following a devastating genetic diagnosis for both of their sons. Their story, its highs and lows entwined with its wisdom and compassion, has been a beacon of hope for thousands of families struggling with fragile X and other autism spectrum disorders.

What is fragile X syndrome?

Fragile X is a common and inherited cause of learning difficulties, affecting a child's entire world, including social and behavioral problems as well as cognition and speech. Rogers not only tells her story, but also gives advice for new parents, sharing facts about…

* the physical and behavioral characteristics of Fragile X

* the effects of Fragile X on learning, functioning and daily activities

* medication and therapy

* how fragile X affects the family

Cindi Rogers and her husband, Chris, share the perspectives and tools they embraced in order to help their boys be as happy and independent as they can possibly be. It is a story of challenges, tears, joy and hope.

**A portion of the proceeds of this book are donated to the Rogers Neighborhood FX Family Fund which in turn offers scholarships to the NFXF International bi-yearly FX Conferences.**

Cindi is the mother of two sons, ages 23 and 25, who are affected with fragile X syndrome and autism. Since receiving this diagnosis, Cindi has become a leader and symbol of hope within the fragile X community.  Her positive attitude, creativity and defining can-do attitude has inspired families and professionals worldwide. Cindi and her family have traveled to conferences around the world to present her innovative strategies, helping families not only to live with fragile X, but to also thrive. It has become her personal mission to share techniques to help families generate ideas that they can implement in their own world, while helping their children with fragile X syndrome to live happier, more independent lives. Today, Cindi serves on the board of directors for Developmental FX in Denver, a non-profit that helps families just like hers learn to thrive in the face of fragile X syndrome. She lives and works with her husband and two sons in Littleton, Colorado, and together they love traveling the U.S. in their RV named Rocket.

Want to connect with Cindi? Here's how.........

On Facebook:

On Twitter:

Via the Rogers Neighborhood FX Family Fund:

Via Cindi's blog:
 --- On the blog, find great website resources as well as other bloggers to follow!

About The Rogers Neighborhood FX Family Fund:
"In 2013 the Rogers Neighborhood FX Family Fund sold t-shirts to raise money specifically for a scholarship to help families attend the bi-annual National Fragile X Foundation Conference.  These custom-designed t-shirts sold like hotcakes and we managed to raise $5500 to pay for hotel expenses for 11 individuals to go to that conference in July, 2014.  It has been our family's mission to help other families be able to obtain the incredible wealth of information we've had the privilege accessing throughout our years of involvement with fragile X syndrome." - Cindi Rogers

Wednesday, April 9, 2014

Third time's a charm?

Originally, Doug and I started this blog to document my pregnancy with Grady. There were a couple of posts, now safely hidden, but the thing just never took off. Then, the diagnosis came. The single thing that no parent wants to experience. Ours? Fragile X syndrome. Within two weeks, I tried again (that post also safely hidden), but there was just too much to say and not enough organization and focus on my part. I wasn't committed....I'm still not sure I'm committed, but I'm willing to try...again. I truly believe that it will be therapeutic for me, and if just ONE person in this world finds it helpful, then it's worth putting myself out there. 

The big motivation for me this time? Many of my friends and family are on Facebook, so it's a good way to update people all at once about those things really important to me. The problem? I recorded what I believe to be one of the best little snippets ever on my iPhone last week. I'm somewhat desperate to share. Think 'shout from the rooftops with joy' kind of sharing. I can't upload said audio clip to Facebook. No .m4a or.mp3 files allowed. I get it, I understand why these types of files aren't allowed to be uploaded. But, this recording is of Grady, not the latest and greatest from the music industry. He's difficult to record, audio or video. Not necessarily because he's acting shy, but because he wants to see what you are doing, so he immediately stops what he's doing to check out the situation. So. frustrating. 

A little background.....when a family receives a diagnosis like fragile X syndrome, it's akin to being thrust into a giant black box. The future is unknown. Truly unknown, or at least that's how it feels. It's often a pretty good assumption that typically developing children will move out of the house one day, and lead a fairly independent life. There are no guarantees like that with a disorder like fragile X. It's a spectrum disorder, meaning some individuals are mildly affected, while others are more profoundly affected. Since FXS is caused by a mutation on the X-chromosome, males are often at least moderately affected and will possess intellectual disability. Only time will tell how affected one is by the disorder. Really, this post isn't meant to be a lesson in fragile X syndrome (you'll receive that from me at a later date, I promise). If you are curious NOW, then please visit here

Fragile X taught me quickly that ALL milestones, no matter how big or how small, deserve celebration. Big celebration! While this may seem small for many, for those of us who have children with a disability, it's a pretty big deal. I present to you.....Grady spelling his name while pretending to write the letters with a bubble wand while taking a bath. Since blogger makes it somewhat difficult to share just an audio file without having somewhere to stream said audio file from (a very frustrating and long story), you are stuck listening to the audio while viewing 4 photos taken of Grady this week.