Our E B Children Are Surely A Gift
I went along for years, happy as a lark, donating to several different charitable organizations when able.
Then I moved to Missouri and met the most beautiful, loving, pure-hearted little girl, my great-niece who was born with E.
B.
At first, I thought she was a burn victim as I viewed her tiny thin arms, hands and legs wrapped in white gauze bandages.
It was not until later when I was able to speak with her mother that I grew aware of E.
B.
and I was in complete shock! My body shook with great sadness, my eyes filled with tears as I heard the quality of life my sweet little angel experienced every single day of her life.
It was not so much that she didn't play or romp about as most children, but the ever-present fear that she would produce yet another blister in doing so.
To be touched a bit too rough, to be lifted in the wrong way, to swallow food that would rub against the inside of her throat...
all standard threats for a child with E.
B.
All actions I had taken for granted my entire life.
I was to learn, later, of the need to tear these blisters, a ritual that took hours and caused physical pain to the child and emotional pain to the caregiver who was usually a parent.
You cannot just pop them.
Ah, that of course would be too easy.
No, you had to take a sterilized needle and actually tear each and every blister apart.
Call me a coward if you must but I am not strong enough to watch the ritual of pain and I marvel at the courage, strength, and pure act of love any parent who performs this daily 'bathe' possesses.
Guess I fell in love with my nieces at this exact moment, mother and daughter bound by a devotion greater than you or I could ever imagine.
How proud I was, and still am, of these two females, one a child growing into a teen, the other an intelligent, beautiful young mother.
I wanted to wrap my arms around them, protect them from harm, yet I sat still unable to control the hard, cold facts of this disease, nor speak of hope when I found none.
I hit me hard, as if a jackhammer had struck me across the face...
no cure...
little research...
a death sentence.
Then I moved to Missouri and met the most beautiful, loving, pure-hearted little girl, my great-niece who was born with E.
B.
At first, I thought she was a burn victim as I viewed her tiny thin arms, hands and legs wrapped in white gauze bandages.
It was not until later when I was able to speak with her mother that I grew aware of E.
B.
and I was in complete shock! My body shook with great sadness, my eyes filled with tears as I heard the quality of life my sweet little angel experienced every single day of her life.
It was not so much that she didn't play or romp about as most children, but the ever-present fear that she would produce yet another blister in doing so.
To be touched a bit too rough, to be lifted in the wrong way, to swallow food that would rub against the inside of her throat...
all standard threats for a child with E.
B.
All actions I had taken for granted my entire life.
I was to learn, later, of the need to tear these blisters, a ritual that took hours and caused physical pain to the child and emotional pain to the caregiver who was usually a parent.
You cannot just pop them.
Ah, that of course would be too easy.
No, you had to take a sterilized needle and actually tear each and every blister apart.
Call me a coward if you must but I am not strong enough to watch the ritual of pain and I marvel at the courage, strength, and pure act of love any parent who performs this daily 'bathe' possesses.
Guess I fell in love with my nieces at this exact moment, mother and daughter bound by a devotion greater than you or I could ever imagine.
How proud I was, and still am, of these two females, one a child growing into a teen, the other an intelligent, beautiful young mother.
I wanted to wrap my arms around them, protect them from harm, yet I sat still unable to control the hard, cold facts of this disease, nor speak of hope when I found none.
I hit me hard, as if a jackhammer had struck me across the face...
no cure...
little research...
a death sentence.
