Coping with the Diagnosis: Grief, Anxiety, Worry
People manage their feelings very differently.
<em>People manage their feelings very differently.</em> Pediatric psychologist Nancy Frumer Styron talks about how people manage the feelings very differently: some cling onto absolute hope; others go immediately to the worst and want lots of information.
We came to the realization that this is the path we’re walking and there is nothing to be done about that.
Parents of a little girl diagnosed with fatal Gaucher Type 2 talk about how impossible it seemed that there was nothing to be done to cure their daughter but, with time and digging for information, came to accept the fact that the science just wasn't there.
Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.
Parents of an infant with Gaucher Type 2 talk about their different wants regarding knowing the disease progression. Dad focused on the data and science and couldn't read the stories. Mom wanted the stories, the connection to others who had gone before. She would watch CPN videos and then select videos for him to watch too.
Your day-to-day life can be a happy place even though your child is going to die.
“When she was diagnosed, I didn’t know that you could become comfortable with the knowledge that your child wouldn’t be there forever and that you could still have a pretty happy cohesive family with the child that has a terminal disease and we didn’t realize that until we were living it but it’s true.”