On Hearing the News

On Hearing the News

The news that your long-awaited grandchild has a disability and an uncertain future is something that no one wants to hear. Emotional responses can be varied, conflicting and very unsettling:  

“When we heard that our first grandchild was diagnosed at birth with CdLS, we were devastated. Our first reaction was disbelief! How could it be? There must be some mistake. No one ever took better care of herself during her pregnancy. What could have gone wrong? Our world was turned upside down!”

“I cried for days.”

“It was the most difficult thing we have faced.”

“I was angry with the way the geneticist delivered the news – without a hint of compassion or empathy.”

“I must admit that the expected joy of a beautiful grandchild, a perfect grandchild, was not there.”

“It never occurred to me to prepare my children for something like this.” 

“The information we were given was an absolute worst case scenario and based on very sketchy information. I left in a haze, devastated, not only because of what was happening to my granddaughter, but also because of what was happening to my daughter and son-in-law. I can’t recall ever feeling so completely helpless. They were in terrible pain, overwhelmed by the reality of what was happening and I could only sit and cry with them.” 

“While never saying anything to anyone, I was torn; I didn’t know whether I wanted her to survive or die. It was a terrible thing to think about.”     

“Within hours of his birth we were told that he ‘might face many challenges in his life.’ It was like being on an emotional roller coaster – happy one minute, fearful of the unknown the next. To me, he was a beautiful but premature baby. 

“The initial impact? I knew I would never again take for granted a newborn being born with ten fingers and ten toes.”

“She was almost three before she was fully diagnosed. We were so glad to get a name for her syndrome.”

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