Spirituality and Religion

The church provided emotional support for us, though my relationship with God has been affected.

The mom of a child with Sanfilippo talks about how her church's congregation has provided wonderful support for her family but how her own relationship with God is currently weakened.

For many people it’s a huge crisis of faith.

Pediatric and grief psychologist Nancy Frumer Styron and a father talk about the role of spirituality and faith in the parent experience. A severe diagnosis for a child stirs up parents' belief systems, including a lack of belief: why me? I feel abandoned. Where will my child's spirit go? I didn't pray hard enough. For others, their faith doesn't waver.

Chaplain: I ask parents that believe in God, “What do you think God wants for you?”

A hospital chaplain discusses how parents wrestle with their relationship (and deal-making) with God, and her belief in the power of parental prayer. "How do you pray when you think you and God aren't on the same page?"

It’s not fair and I’m at that point where I’m not sure I believe.

The mom of 2 sons with Mito speaks honestly about her struggles with belief in God. God must have thought I was a badass if he gave me all this. What God would want us to go through this? We're doing an incredible job and I'm so proud of us and we're finding our way, but It's Not Fair.

Oh my gosh, is she going to heaven?

Kate, mother of Brook who is 3 and has Tay-Sachs, wrestles with how to think about Brook's spirit after she dies. "I wanted so badly to believe. ... I need my other child, my son, to have hope. Brook is going to be out there in the universe."

I know we’ll spend eternity in heaven together.

The mom of a daughter who died at age 9 from cancer talks about how difficult it is when you pray for a miracle and then the miracle doesn't come. "But in the end, what saves me in my faith is that we can spend eternity together in heaven."

Chaplain: Spirituality is how we make meaning.

A hospital chaplain discusses the many ways people make meaning, the role that spirituality and religion can play in a family’s journey, and how it is the chaplain’s role to walk with parents.

God gives me the strength to keep carrying on.

The mom of a 16-year old daughter with the life-limiting illness Canavan disease, talks about how she thinks about God's role in her life.

It really does put your faith to the test … and you find out that it works.

The mother of a 22-month old with leukodystrophy talks about the impact of her daughter's illness and prognosis has had on her relationship with her faith and the notion of suffering and walking the walk.

It wasn't good but we felt that God was going to help us deal with everything.

Parents of a 15-year old diagnosed with aggressive leukemia talk about the immediate strength and constant peace they got from their deep deep faith in God, including during the difficult periods of decision-making with doctors. "We put God right in front. God was guiding us. We put ourselves in God's hands."

You may not appreciate it now, but when the whole thing happens, there is a plan.

The mother and sister of a 16-year old girl with the life-limiting illness Canavan talk about how their Jewish faith helps them make sense of their situation.

When you have God on your side, you see everything different.

Parents of a daughter with rare, aggressive leukemia talk about how their deep faith in God and prayer helped them through their daughter's illness journey and death.

I find my faith in community.

A father of a 22-month with leukodystrophy shares the impact her illness and prognosis has had on his relationship with Church: he has distanced himself from the teaching but draws support from the faith community.

“Can you pray for my family? And can you pray for the nurses?”

Parents of a daughter with leukemia describe how her deep faith helped her during her life, from diagnosis through over a year of hospitalization and then through her end-of-life. Prayer was a huge piece of her practice.

Don’t talk to me about Karma.

Mother of a daughter with Trisomy 18 talks about "Why me" and how she makes sense of her daughter's prognosis.

I believe in the power of positive thought.

Parents of a daughter with Trisomy 18 talk about the role of religion in their lives and what they do have faith in.

People say things happen for a reason but I haven’t found the reason yet.

The mom of a little boy who died at 23 months from SMA shares how her son's illness affected her faith and how she is struggling to find meaning in what happened.

Christian music just really helps me to stay balanced. God has a plan.

The mom of a 12-year old with SMA Type 1 talks about how her faith helps her get through. "God has a plan and someday it will make sense. It's a beautiful tapestry that gets woven together." "I can't always be positive, but I'm always growing."

The church provided emotional support for us, though my relationship with God has been affected.

For many people it’s a huge crisis of faith.

Chaplain: I ask parents that believe in God, “What do you think God wants for you?”

It’s not fair and I’m at that point where I’m not sure I believe.

Oh my gosh, is she going to heaven?

I know we’ll spend eternity in heaven together.

Chaplain: Spirituality is how we make meaning.

God gives me the strength to keep carrying on.

It really does put your faith to the test … and you find out that it works.

It wasn't good but we felt that God was going to help us deal with everything.

You may not appreciate it now, but when the whole thing happens, there is a plan.

When you have God on your side, you see everything different.

I find my faith in community.

“Can you pray for my family? And can you pray for the nurses?”

Don’t talk to me about Karma.

I believe in the power of positive thought.

People say things happen for a reason but I haven’t found the reason yet.

Christian music just really helps me to stay balanced. God has a plan.