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Showing posts from November, 2013

And the Award Goes To...

For our final day of blogging during National Health Blog Post Month, WEGO Health asked me to nominate a health activist for one of their Health Activist awards.  Since they allow organizations to be nominated, I went ahead and nominated the International WAGR Syndrome Association (IWSA).  The IWSA is an all-volunteer organization; meaning no one, not even me as the president receives any payment or advantages from the group; and still we work hard each day, month, and year, to ensure that we uphold our mission:


“The mission of the IWSA is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives”http://www.wagr.org/aboutiwsa.htmlI cannot express sufficiently how honored I am to be among this group.  I am moved to tears during each WAGR Weekend when we hear about what the IWSA has accomplished from one year to the next. To think tha…

Knit Together with Threads of Energy, Creativity, and Stubborness

Shucks, folks...this entry today is tough.  For one of the last entries during WEGO Health's National Health Blog Post Month I am told to write about three things I love about myself.  Since it's sometimes easier to talk about the things we DON'T like about ourselves, I can easily say, "I don't like my baby-fine hair, my extreme eczema on my hands and feet, nor my compulsiveness to shop."  That, however, would not be completing my assignment!  So, I will dig down deep and pull out what I find to be my three best qualities:  energy, creativity, and stubbornness.  


Considering that I typically am multi-tasking to the point that I will run the water into a pitcher to get water for coffee, while simultaneously throwing out the old coffee grounds, filling the new filter with new coffee grounds, and then pulling out of the refrigerator all the items Evie will need in her lunch; I KNOW that I have a lot of energy.  My to-do lists help me stay focused and enable me to…

My Cup Runneth Over

I marvel daily at the blessings in my life.  I've learned to count my blessings whenever my heart starts to feel doubt or fear.  Today, as is fitting, my assignment for WEGO Health's National Health Blog Post Month is to write about the three things that I am most grateful for in my life.  And ,ultimately, to name the greatest blessing of all.  Considering all that I have to be thankful for, this is not going to be easy, but I know where the heavy hitters are.   

First, I have to say that I am thankful for WAGR/11p Deletion Syndrome, and all our WAGR families around the globe.  Certainly, when we, the Heftys, are

in the midst of pain and heart-ache, the syndrome does not seem like a blessing; but God holds up his end of the bargain when he says that he will work all things for our good, according to his will.  Ten years ago, I could never have imagined saying, "I'm blessed to have a daughter with WAGR/11p Deletion Syndrome." Heck, I don't think I could have sai…

Noises, and Bright Lights, and Lines~ OH MY!!!!

Oh, the joys of holiday shopping!  I don't take Evie out with me on Black Friday because she doesn't even like shopping on a regular day, let alone the biggest shopping day of the year.  However, I have had my share of long lines with Evie, and have had to take her shopping when I have no other choice.  Today's assignment for WEGO Health's National Health Blog Post Month is to tell you about the things that I have done to make the experience a little less painful for all of us.

My friend, Jenny, who also has WAGR (the same syndrome Evie has) told me that the noise and bright lights in the stores unnerve her.  Based on that information, I tried putting music on my iPhone when we would go through Target or other stores.  She and I would sing along while we walked down the aisles.  It was a tremendous help.  Even better, we add headphones when we know that the volume would need to be too loud in order to help her; so as not to offend any of our fellow shoppers.   

Another t…

The Three Questions I Wish to have Answered

There are many things I'd like to know about how Evie processes things.  Often, when I need her to be honest about her feelings, she will start telling a totally fictional story-with characters who don't even exist. Today, my assignment for WEGO Health's National Health Blog Post is to write about the three questions that I would like to ask a patient with the syndrome by which our family is affected.  What I'm actually going to do, to put my own spin on things, is share the three questions I would like to ask Evie, but either I'm afraid to or I don't know if she would answer it truthfully.

First, I would like to ask Evie is she would rather see me cry over the things that break my heart, or if she'd rather I put on a brave face and not show her my fear.  I, obviously, balled when she was diagnosed with Wilms Tumor, when my grandma died, and when my dad died.  I know that seeing me cry heightens her anxiety, but I don't know if she'd rather I NOT cry…

The Power of a Good Plan

With Thanksgiving this week, and Christmas just around the corner, it's only appropriate that the assigned writing topic for WEGO Health's National Health Blog  Post Month is to write about things that we have to do as part of our planning for the holidays because of our daughter's health condition, WAGR/11p Deletion Syndrome.  

First of all, we know the holidays are dangerous because there is a high risk for over-eating (to say the least.).  Since people with WAGR/11p Deletion Syndrome are at risk for obesity, plus the added health risks of diabetes and kidney strain; we really have to watch Evie's diet to ensure she stays as healthy as possible.  We track calories through an app on Evie's iPad called My Fitness Pal.  I tell Evie that we play the game 1200 and try to keep her calories under 1200.  That's still maybe a little high, but I figure if we can do this during the holidays, then we are good shape for warding off on-wanted weight gain.  Obviously, we can…

Take the High Road~but Ensure the Bridge of Forgiveness is Open

According to www.urbandictionary.com , to "Take the High Road" means  "doing the right thing even if its not popular or easy."  For my nineteenth day of blogging with WEGO Health's National Health Blog Post Month, my task is to talk about a time when I had to take the High Road because of my daughter's health condition.  Is it a coincidence that this just happened this week?  Hmmm....the likely answer to that would be "no."

First, I will set the stage.  An acquaintance on Facebook had posted a picture of Helen Keller with a dog.  The words that were graphed over the top and bottom of the photo read, "Helen Keller and her beloved cat, Mittens."  Several people had already "liked" the photo and there were some who had commented and said that it was funny, and beyond funny.  My heart truly started racing; it is even now as I take myself back in my mind to this occurrence. 

"Don't be so sensitive."
"It's not m…

My PhD in WAGR/11p Deletion Syndrome

I didn't actually apply to the College of Letters and Science for the WAGR/11p Deletion program, but was recruited.  Apparently my stubbornness, curiosity in all subjects, and enthusiasm to use my communication skills made me a qualified candidate.  Now, I find that, after only a few years of parenting a child with WAGR/11p Deletion Syndrome, I have earned the honorable degree of PhD.  Maybe there's no diploma on the wall for this degree, and I didn't get a fancy "puffy" gold trimmed regal robe, but I do have a knowledge of WAGR that comes from experience and listening to others who have gone through it.  I also know that my education will continue; (apparently one needs to keep up to date on all the exciting developments as they arise.)

For WEGO Health's National Health Blog Post Month's 23rd day of blogging, I'm supposed to write about the times when I have "taught the teachers."  In other words, when have I been the one to help the doctor…

Behold, my Favorite Blogs

The credit can be given to Twitter...once I figured out how to use it.  :)  I could search #raredisease, or #faith, or just take a peak at the Snappin' Ministries=Disability Ministry list, and I found myself overwhelmed by wonderful blogs written by extraordinary people.  These people blog about rare diseases, and even common ones, and how faith gets them through each day.   Today, for WEGO Health's Favorite Fridays, I have been assigned the task of telling you about my top three favorite blogs.

First, I have found www.comfortinthemidstofchaos.com to be a wonderful read.  This blog is "a daily devotional especially intended to offer compassion to other challenged parents of kids with special needs."  Published by Snappin' Ministries, this blog incorporates scripture, personal narrative, and prayer into the posts.  I find it a comforting reminder (suitable to the name) that God is with us, and that I can find his support all around me. 

Following Snappin' Minis…

Mind-Games~How to Finish the Race

On this 21st day of November, my assignment for National Health Blog Post Month from WEGO Health is to write about the mental effects of the illness that we live with every day.  I could talk about Evie's anxiety, because that is pretty off the charts, and quite typical of WAGR/11p Deletion Syndrome.  I could talk about how so much medical intervention at such a young age can affect the self-esteem of a child as she grows older.  I think, however, it's more important for me to talk honestly about something I, as a mother,  experienced when Evie was being treated for cancer. 

About 2 months into Evie's chemotherapy I had a panic attack in a movie theater.  I had been experiencing migraines on a daily basis and had medication to take that would help minimize the pain.  Unfortunately, the medication I took had a high quantity of caffeine in it, and I had compounded that by drinking coffee, diet soda, and eating some chocolate covered coffee beans.  I had created the perfect s…

I Still Remember...

I have moments in my life that are like snapshots; pictures frozen in time...

I still remember day two of Evie's life.  Day one had been filled with joyful phone calls to family and friends, (no Facebook at that time), sleep-deprived hours of trying to learn to nurse, and watching Tommy Boy.  Day two was filled with visitors, and gifts and more joyful phone calls.  On the night of that second day, I recall one specific moment above all others.  I was laying on my right side in the hospital bed.  Evie was cradled next to me, swaddled in a pink receiving blanket, with a knit baby cap on her head.  Her eyes were closed, and the room was bathed in the soft gold light of the Christmas lights hanging above my bed.  (The midwives called them "Birthing Lights.")  Evie had a baby smell that I can only describe as pepper.  Maybe that's why I go looking for fragrances now that include pepper in them.  I loved the way she smelled.  I laid there, looking at her perfectly serene fa…