Coping with the Diagnosis: Grief, Anxiety, Worry

We’re talking about the losses along the way

Pediatric psychologist Nancy Frumer Styron describes the grief that occurs upon diagnosis suggesting that there will be a loss: grieving the things that aren't going to happen (school, graduation, marriage). Symptoms include anxiety, anger, deep sadness.

Some people want to look, some people don't

Pediatric psychologist Nancy Frumer Styron talks about scaffolding and providing information for a family in a way that meets their needs and works for them.

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 felt we better step up and show her that she picked the right parents.

Parents of an infant diagnosed with Gaucher Type 2 reflect on how they focused on being happy with her during her short little life and finding a way to see a bigger picture.

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.”

I was scared of losing him. I was scared of him not have a quality of life.

The mother of a 12-year old boy with SMA Type 1 talks about mourning the loss of her dreams for her son, while also celebrating the happy milestones he has reached that she could not have hoped for -- he graduated 6th grade!

We’re talking about the losses along the way

Some people want to look, some people don't

People manage their feelings very differently.

We felt we better step up and show her that she picked the right parents.

We came to the realization that this is the path we’re walking and there is nothing to be done about that.

Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.

Your day-to-day life can be a happy place even though your child is going to die.

I was scared of losing him. I was scared of him not have a quality of life.