I’ve written about how my Tabby Mae has been grieving for her cuddling mate Midnight who died 10months ago and recently she sat hugging the scratching post he loved. Also how his young ginger girlfriend Ruby who is a bully likes tough love and Mae will have none of that! Well tonight it happened on the lounge both girls lay sleeping and Mae put her leg over Ruby which is a great sign of bonding!
Today I heard on the car radio that it is Butterfly Day for kids suffering from E.B. It was the first time I had heard of this disease and so I looked at their website here and in the United States [be prepared for disturbing pictures]. I was appalled at what small children go through with Epidermolysis Bullosa as their skin blisters horrendously and causes them infections and tremendous pain.This is a rare genetic disorder and affects all nationalities.
The wounds vary in severity and although they resemble burns, they don’t heal as burns do. The child with E.B. cannot ride a bike, skate, or participate in sports because normal play causes chronic sores which are sometimes covering 75 percent of the body and can be life threatening. These children are confined to a diet of only liquids or soft food to cope with blistering and scarring which occur in the mouth and esophagus.
Their fingers and toes can fuse due to scarring, leaving deformities affecting their ability to function. Their lives can involve being constantly admitted to hospitals for wound treatment, blood transfusions, biopsies and surgeries. They often have sight problems because their eyes blister. Chronic anemia is another symptom and this reduces energy and retards growth. Life beyond 30 years is not expected.
I found that in Australia there are attempts to raise money and support services for children who suffer with E.B. and for their families. So I hope that I can raise awareness about this devastating illness through my website to help their fundraising and make their plight easier.
I am sure that you too will find it as heartbreaking as I did when you visit the E.B. websites.
When we are faced with the death of a loved one the pain is deep. The shock can be so immense that we cannot believe it’s true. Sometimes even sorrow is buried by the shock. As time passes we adjust to the reality of the death and grief takes over. Then we flip back and forwards through those stages of shock, awareness of the reality, and grief peppered with attempts to justify our inability to have prevented this outcome. Finally with relief reality takes hold and we accept that we must give up and say goodbye.
last week a dear friend told me of the
loss of her friend as she mourned Verna
then at the beginning of this week we lost
another respected member of the community
Dr. John Hirshman A.M., such a loving friend
and today I found out that our closest friend Sally
was killed by a car on her way to work
all week I was sorrowful but today I kept repeating
“it’s unbelievable” realising that I will not see Sally again
such a heartbreaking week full of death and grief
it made me become aware of my mortality and
that of everyone else near and dear to me
center of a rose, photo by Jan Roger Johannesen, Trondheim, Norway, http://www.janroger.no