Summer Time

SUMMER TIME:  I love the heat of the summer, tanning by the pool or ocean, smell of freshly mowed grass, flip flops, beautiful green foliage everywhere, outside festivals, and the length of the daylight hours. 

My least favorite and hardest thing to cope with during the summer is what to wear.  Due to my many surgeries I have a road map all over my torso, not to mention the under the skin bump, better known as my esophagus.  This makes it EXTREMELY difficult to find a swimsuit, tops and shirts that camouflage my scars, yet keep me cool.  Each time I go to shop for these items I all but break down into tears because of this daunting task.  Sometimes I handle it better than others.  This brings me to two different events.

Just recently I was shopping for high neck tops/shirts for the summer. As I was looking through the racks it dawned on me that all the other Ladies in the same store did not know how blessed they were to choose whatever fashion appealed to them.  I took about eight pieces to the dressing room and came out with two.  One that zipped up the front and the other that buttoned to the top.  How ridiculous I will look this summer with these two shirts up to my neck, but it is better than the alternative I would experience.  I made my purchases and later in the day called my Mother to tell her about my conquest of two shirts.

The other shopping excursion occurred earlier than the one just described.  I was again shopping for tops/shirts and I had an epiphany, that even though I could not choose what I would really like to wear I had money to buy what I could wear and thought that was a blessing.

The swimsuit issue was resolved by my more than EXTRAORDINARY Mother.  She found a wonderful Lady who professionally designs gowns, swimsuits, etc for pageants.  This beautiful woman graciously made me many swimsuits to die for.  I now have one of a kind suits and proudly wear them at the pool and beach.

Both of these shopping events probably happen to most women for some reason or another.  We must remember when we are thinking that someone has more choices than we do that is not necessarily so.   Be happy in the skin we are in for someone else's challenges may be greater.

What is a Miracle?

What is a miracle?    Webster's definition of miracle is: "an extraordinary event manifesting divine intervention in human affairs".

A Doctor once told my parents, "The only thing that will save your baby is a miracle".

So, if that was the truth, then I must be a miracle. One would think that a miracle has special privileges or magical attributes.   With my miracle status why has my life been full of struggles, bad choices, and not bluebirds of happiness?    The only one who knows the answer to that question is the one who preformed the miracle of saving my life, God.  I guess once the miracle of life was given to me, it was up to me to find those bluebirds of happiness.  As I have gotten older life has become somewhat easier however, I am still struggling to define why am I a miracle?

Jeopardy Question

What is mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty?



Answer: Courage

2012 Newsletter

Struggling with the "Beast"

I am struggling with a violent acid reflux attack tonight.  Awakened from sleep by this horrific beast, I know the only thing to do is to hang on for dear life and wait for the calm.   Once the attack has subsided I am afraid to go back to bed.  You see, gravity is my friend during these hurricanes.  My small body weakens afterwards and I have no choice but to forge on for some form of sleep as I must pick up life's daily routine the next morning.  As they say, no rest for the weary. 

My journey as an EA/TEF survivor has been difficult, experimental, sad, and unknown.  As I have taken a new turn in this strange journey there seems to be the proverbial light at the end of the tunnel to my understanding.  I am becoming more aware that EA/TEF cannot be cured just managed.  As I attended the 2nd Annual EA Conference in Montreal, Quebec, Canada, this past week, I learned a great deal more about this rare birth defect. The most important thing I realized after the conference, is that the world is taking notice in making great strides in bringing awareness to the forefront.  My new journey is not to be cured personally, but to bring awareness of EA/TEF and hope that one day this birth defect will be no more.  THIS IS MY WISH!    



Looking forward to attending the 2nd Annual Ea Conference in two weeks.   I can't wait to meet individuals like myself and hear my Mother share her experiences of raising a child with EA/TEF with parents who are currently maneuvering through what she has tackled.  I hope to meet with Dr Russell Jennings, a renowned EA/TEF surgeon, to express Christy's Courage Foundation goals and gather ideas he may have on research to prevent or correct EA/TEF before birth.  Looking forward to bringing back information to share with everyone.  Praying for safe travels and wisdom.

Peace & Blessings
Christy  

http://eamontreal2012.com/