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April 01, 2006

In memory and for the future ...

Christmas 1964
click for larger image

This picture was taken at Christmas Time, 1964, in the lobby of The Smoke House restaurant. The adults, left to right are my Uncle Bob Jr., Aunt Mary Anne, Grandma Mildred, Grandpa Bob Sr., Mom and Dad. The kids are (left) me, my sister Val (with eyes closed), cousin Kathie and, front and center cousin, Debbie. Kathie and I are 10 years old, Val and Debbie are 7. Christmas was a family holiday that my grandparents loved to celebrate the whole month, with dinners and visiting.

Well, they did that with birthdays, too.

A lot of memories flood back with that picture, but tonight I want to talk briefly of the sweet little girl in the middle. Debbie of the soft blonde hair and gentle smile.

A little less than three years after this picture was taken, she was dead.

Debbie had Cystic Fibrosis. I knew the name of the disease. I knew my cousin was sick enough to sleep each night with in an oxygen tent, to take handfulls of pills each day and to have to spend time breathing on this large machine in her bedroom. But the idea of death was something that just didn't occur to me. Her younger sister, Terry, had died of CF 5 years earlier at 18 mos of age.

The specter of CF was to haunt me through my 4 pregnancies, during a time when prenatal genetic testing for CF was unknown. CF had been nowhere in the known family medical history until Debbie and hasn't shown up since. I had tried to emotionally prepare myself for at least the possibility of it appearing.

For those parents who have no inkling of even a possibility, a diagnosis of CF can be heartwrenching. Scary beyond words.

Mieke brings us the story of her best friend, Elise's, infant daughter, Adelaide, who has been diagnosed with CF. On one hand, it was an actual answer to the anxiousness borne of not knowing what was wrong with their baby. On the other, the devestation of realizing the challenges of the future with coping with such a disease.

Fortunately, the past 40 years has seen such strides in the treatment of CF that life expectancy has increased from age 12 to age 35.

And here is where I'm going to ask your help again. Mieke is going to walk for Cystic Fibrosis and she's asking for sponsors.

I've already donated -- in memory of my cousins. Would you please do the same?


Posted by Darleen at April 1, 2006 09:12 PM


Thank you for posting this Darleen. It is amazing to think that in a matter of a few decades, the life expectancy has changed so much. I'm so sorry for your cousin and her family. She was a beautiful little girl. We feel blessed to live in a time when a cure is possible. Thank you again. Elise

Posted by: elise at April 2, 2006 09:47 AM

If everyone who reads this story would donate just $5 or $10 it would start to add up soon. The majority of the donations have been $25 - look how quickly it has turned into a significant amount.

Please help me help Addie.

Posted by: Mieke at April 3, 2006 10:31 AM