Finding Support

The therapist helped us process and translate our actions and feelings.

Parents of a child with a life-limiting illness talk about how working with a therapist helped each of them stay on the same page, communicate, understand their different coping styles, and put effort into their marriage in the face of such a difficult challenge. Mom shares one particular tip.

Watching videos helps put words to things.

A father talks about how watching CPN videos of other parents sharing their feelings helped him put words to his own.

Our primary care pediatrician was our biggest support.

The mom of a child with Sanfilippo talks about how, even with all the specialists, the pediatrician was their most important and supportive care provider. He coordinated the specialists and was the main person she called. He saw her as a normal child, not a child with a rare disease.

Talking to a Third Party, “Am I crazy?”

The mom of a child with Sanfilippo talks about how a third party counselor helped validate her feelings and perspective. The counselor notes, "Parents are never crazy. Everyone is doing the best they can."

Parents like us, we're all on this island of misfit toys

A dad of two children with a rare metabolic disorder talk about how parents trust and seek comfort, advice and support most from parents of other sick children who are in the same situation.

I trust parents more than professionals when it's the home life

A mom talks about how the medical figures are authority figures but there is an equal give and take between parents. Parents are the best source of support. "If you're comfortable, you make the other people comfortable."

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.

Think about what you need.

Grief counselor Nancy Frumer Styron talks about the variety of ways that parents find and seek support from family and friends (and are also disappointed by family and friends) -- people can surprise you. A mom shares where she sought and found support and how beneficial it was.

The communication piece is very important.

Grief counselor Nancy Frumer Styron discusses how it is common for parents to feel like friends and family have let them down, and that it is therefore important to communicate what the needs are. We can't expect them to be mindreaders. A mother shares her approach--"tell friends and family what you expect."

We both lost friends over this.

The parents of a little boy who died from SMA Type 1 describe how a few of their close friends unexpectedly just didn’t get it at all and let them down.

At the end of the day, it’s my kid and others can’t take that on.

A mom caring for her child with cancer talks about how others can't take on her burdens or responsibilities, and that it's also a good idea to give people suggestions for how they can be helpful.

Pros and Cons of Social Media

Grief counselor Nancy Frumer Styron talks about how parents use social media to find and seek support. Parents talk about how they use(d) social media to help them care for their child with a life-limiting illness, reach out to friends, and build community.

Find at least one person you can reach out to.

The mom of a daughter who died at age 9 from cancer shares that she had one particular person (in her church) who was her Go-To. Have the one person you can call to complain to, to lift you up, to remind you you're doing a good job.

Ben brought us this huge support network.

Parents of a son with SanFilippo Syndrome talk about how their son brought so much goodness into their life, including spiritual and emotional support.

This has given me a lot of hope for humanity.

The father of a 22-month old with leukodystrophy talks about how much support and faith he gets from the people -- including the amazing providers -- who help them.

Finding support in God, family, providers and just talking about it.

A mother of a 22-month old with leukodystrophy and 6 other children talks about her various sources of support: church, prayer, her husband, her Mom, telling their story.

Don’t hesitate to say, Somebody help us keep it all together.

A father talks about how critical it is for his family that the marriage is strong amidst the stressors, and that to do this, he and his wife have sought help from a professional counselor. "We talk about so many issues. And it helps, including in the care of our little child."

When you start talking, they start sharing.

The father of a 3-year old with a rare, life-limiting illness shares how he talks about his daughter with work colleagues.

I can’t handle the negativity of some people.

<em>The mother of a 3-year old with a rare, life-limiting illness talks about how she screens negative people out of her life.</em>

Chaplain: I encourage parents to connect with other parents.

A hospital chaplain discusses the value of parents connecting with other parents: beautiful little connections and relationships can be made that ease the loneliness and sense of isolation. These connections can help parents make meaning: Extraordinary people come into our lives because of these children.

We put our heart out there and they shared it back with us.

Parents of a son with SanFilippo Syndrome talk about how open they were about Ben and his prognosis, how comfortable they were talking about it, and because of that they had a lot of support because people felt comfortable with Ben and the disease and with the family. It was a great life-embracing, almost spiritual thing. He was open, we were open, he had a way of moving into people's hearts and spaces and we just followed his lead and it gave us strength."

Reach out to other families, they’re on the front line every day.

The mom of a 12-year old with SMA Type 1 talks about the value of reaching out to other families who often know more than the doctors: by phone, in person, or by email, whatever is most comfortable for you.

The therapist helped us process and translate our actions and feelings.

Watching videos helps put words to things.

Our primary care pediatrician was our biggest support.

Talking to a Third Party, “Am I crazy?”

Parents like us, we're all on this island of misfit toys

I trust parents more than professionals when it's the home life

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

Think about what you need.

The communication piece is very important.

We both lost friends over this.

At the end of the day, it’s my kid and others can’t take that on.

Pros and Cons of Social Media

Find at least one person you can reach out to.

Ben brought us this huge support network.

This has given me a lot of hope for humanity.

Finding support in God, family, providers and just talking about it.

Don’t hesitate to say, Somebody help us keep it all together.

When you start talking, they start sharing.

I can’t handle the negativity of some people.

Chaplain: I encourage parents to connect with other parents.

We put our heart out there and they shared it back with us.

Reach out to other families, they’re on the front line every day.