Coping with the Diagnosis: Grief, Anxiety, Worry

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.”

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.

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!

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

We’re talking about the losses along the way

Some people want to look, some people don't

People manage their feelings very differently.

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