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Thursday, August 2, 2012

My Mother's Outlook

My parents both had the same recessive gene for a neuro-muscular disease.  Werdnig Hoffman or Spinal Muscular Atrophy.  61 years ago when their first child was born with the disease it didn't have a name.  The doctor sat down with my mother and told her that her son, Ronnie, was going to die because they could see the atrophy happening.  The doctors suggested that my parents have more children.  47 years ago, when Howard was born, the disease had a name and a life expectancy- 6 months.  Also, my parents found out that they had a 1 in 3 chance of having a baby with Wernig Hoffman.  My mother said that if she had known that she wouldn't have had any more children.

Below are pictures of Howard.  He was born when I was 7 and died when I was 15.  As I was going through these pictures I was struck with how full Howard's life was.  He never said a word but that never stopped my mother from exposing him to so many things.  He never had a bed sore and I know why, my mother kept him moving, which was a major feat.  When Howard died he weighed 57 pounds.  We could all pick him up because mother knew his life might depend on us getting him out of the house someday.  

My mother never complained about having a baby with this disease.  Mother said that she was thankful that God had given this baby to us and not an unwed mama who couldn't handle his care.  I never realized all the sacrifice until I had my children and I got a small taste of it.

I am more impressed with all my mother did with each passing year.
books were important to us all

Howard was at all birthday parties
Charles with Howard outside
Mama and Howard outside at our house
Howard loved to laugh.  We all enjoyed making him laugh.
 outside on a hot summer day
Notice the fun jammies and that he had a boy haircut
Howard and the Christmas tree

1 comment:

Sarah Barry said...

What a precious story. Love these pictures. Your mama sounds like she was a very amazing person.


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