Baby Blues

I am almost 28 ½ years old.  I do not have any children, and recently, I have realized how much I want a child.  Lately, I cry when watching TV shows with babies, and I now feel that ache in my heart.  That ache that lets me know- okay, you are now emotionally ready to take care of another human being.  Being physically able is another story.  

Several weeks ago I met with a genetic counselor.  We talked about my family history and about the options for having a baby.  I was already well-versed in the options and the risks for me having my own child.  Not knowing much about FSH MD, I sent her my gene test and she called a genetic counselor at Athena Diagnostics, where the test was performed.  She did learn some interesting things which she passed along to me in a phone conversation after our initial appointment.

One thing I had been told (or read- I can’t remember) was that if I got pregnant, they could test the fetus to see if the baby was likely to have FSH.  This is actually not the case in 2013.  Testing is currently only available from blood samples and therefore could not be done during prenatal testing.  I think I was told/read that while they could test a fetus for presence of the gene they would not be able to tell the severity… the presence could mean symptoms as hard to deal with as mine, or they could show no symptoms at all.  I assume these facts are related.

Therefore, my options would be to have a baby of my own and “chance it.”  The physical stress this would put on my body is obviously a big part of this scary decision.  I could have a surrogate carry my egg and “chance it” or carry a baby with their egg and my future partner’s sperm.  Or, I could adopt.  She was very adamant that while the technology isn’t available in 2013 to test a fetus for FSH MD, it could be in a few years.

Almost as if the Universe was feeling the pain in my heart to realize and accept that I would {probably} never carry a child of my own, the Today Show did this amazing special on adoption for a whole week.  I have always thought giving a child a home who needed one would be a great way to go.  During the special, they were talking with kids of all ages who just wanted a family to love them. 

I am now 99.9% convinced that adoption would be the best and most natural option for me to have children.  I better begin my research.

Veterans Day

Let's all take a moment to honor and pay tribute to our veterans on Monday.
 
"On the first anniversary of her election to Congress, Rep. Tammy Duckworth, an Illinois Democrat and Iraq war veteran, urged the passage of a treaty that would protect the rights of individuals with disabilities on a global scale."  Read the rest of this article here.

FSH MD

FSH MD occurs in 7 out of 100,000 people and is the most common form of muscular dystrophy.

People with FSHD comprise about 25% of all muscular dystrophy sufferers.  

There is no cure.

Friends of FSH Research is a wonderful organization dedicated to finding a cure for FSH muscular dystrophy! If you're looking for a way to support the cause, consider donating to them. 

No matter how large or small the obstacle may be- this is an important reminder that you can get through it.

Website Up and Running!

Check out The Graceful Art of Falling website!

I like to think of it as the hub of all Graceful activities :). 

Disability Awareness Day

I have had the privilege over the past month and a half to work with a student group on UNM campus.  The A.C.C.E.S.S. group (Accessible Campus Communities Equals Student Success) planned the Disability Awareness Day Event going on tomorrow, October 28th, on the University of NM Campus.  

I am a little embarrassed to say that I did not know this group existed while I was attending graduate school at UNM. I don't know that I would have been a part of the group at that time, but I'm so glad that I was able to participate in this event planning.  The members of the group are incredibly strong and capable individuals who promote access for EVERYONE: those with physical, mental, and learning disabilities, LGBT, and other underrepresented groups are a part of this advocacy.  

We will have several workshops at the event put on by organizations in Albuquerque and Santa Fe.  Tim Harris, of Tim's Place, will be the keynote speaker.  The theme of the event is: "Accessibility is for EVERYONE: Understanding 'Ableism,' Redefining Disability." 

This will also be the first event to promote The Graceful Art of Falling! Bookmarks will be handed out, and I will be participating in a student panel discussion about barriers and access for students with disabilities on campus.  Come join us!

Book Review

Below is a recent review of The Graceful Art of Falling:

"This book will bring you comfort, tears, and hope. Without having to know the author, you can hear her voice as she recounts her experiences with MD, good and bad. There are parts of this book that make you root for L. White while you are silently cheering for her as you feverishly read through the chapter. There are parts that make you hold your breath and say a prayer for her. There are parts that make you feel like you are right there next to her and wish you could reach out and offer her a steady hand. Then there are parts that make you envious at the amount of strength and bravery this woman goes through everyday. You wish you had half of what L. White has. This book makes you hope for a future where MD has as much publicity and awareness as some of the more popular foundations. It makes you hope that there will one day be a cure for this disease. L. White is truly a brave woman and should be admired among all who read this book for giving us a look inside her head and what everyday life is like with this disease."


Have you had a chance to read the book?

Consider writing a review on Amazon and/or the AuthorHouse page.

I would love to hear your thoughts!