Bereavement

Grief is a normal process but it can get complicated.

Grief counselor Nancy Frumer Styron discusses some of the variables that can complicate the grieving process: multiple losses within weeks of each other, past experiences of loss, mental illness.

"When she was alive, we invited people in. We are learning how to help people connect with us again."

Bereaved parents talk about how when their daughter was alive, their home was warm and they actively invited people in to share the good times, to share in her life; and now that she is gone, they are figuring out how to reach out to invite people in again. They talk about their evolution in understanding their friends' reactions since their daughter died. "The hard thing about bereavement is that you have to help others figure out how to be with you."

We are learning to be patient, rebuilding slowly.

Bereaved parents share their current struggle as they find their way and their daughter's legacy. "We have to make sure we're stable and helping ourselves. We need to know where we are before we can do anything."

"Now I have deep conversations about the burdens people carry."

A bereaved father shares how his daughter's death from Gaucher Type 2 has led him to hear other people's struggles and burdens and to open up about his own. "I feel I owe it to my daughter to tell people about her, to let people know she was here. And to then help people move past it."

I think the hardest part is after she's gone.

The Grandmother of a little girl who died from Gaucher Type 2 shares how challenging it has been to miss her as much as they have and how family wants to help but doesn't know how.

I put my heart at rest that they don't have any regrets

A grandmother finds peace after her granddaughter's death in the fact that her daughter and son-in-law have no regrets about the decisions they made for their daughter and the life they gave her.

I'm inspired by them. I'm very proud of them.

A grandmother of a little girl who died from Gaucher Type 2 talks about her pride in her daughter and son-in-law after their daughter's death. "They're capable. They get up in the morning."

"I find her in things. Sometimes it hits out of the blue."

A bereaved father shares some of the little moments when he sees and feels his daughter and the challenge of being hit by the grief unexpectedly.

"Now I can have the long view towards finding a treatment or cure."

The mom of an infant diagnosed with Gaucher Type 2 reflects on how she focused on quality of life during her daughter's short time. But now that she has died, the mom can look out towards the long road to a cure.  

Even though we’d thought about our life after Jessie died, it didn’t really help.

The mom of a daughter who died from Sanfilippo speaks candidly about how difficult it has been. What is her identity as a parent? It's mostly been painful. The anniversaries are lousy. Every new year is going to be tough.

The continuing relationship with her providers, even after her death, has been important in my healing.

A bereaved mom talks about how important the continuity of connection with the closest medical providers has meant to her healing.

Answering the question, "How many kids do you have?"

Bereaved parents of two children who have died talk from a rare disorder about how and when they say four vs two. -- You run into people and you sell out. It's easier. We figure out how to say 4 and explain. I'm sorry if I'm ruining your day. This is our whole story.

You don't owe anyone an explanation and you don't have to feel good every day.

Bereaved parents of two children who have died talk about how unbearably sad, 'emotionally crippling' it is for children to die but how especially important it is for parents to be able to talk about them.

How I've been processing my grief.

The mom of two children who die from a rare metabolic disease shares: "I write a lot. I practice yoga. I did grief counseling. These three components made a beautiful pathway for me to walk along. It didn't give me answers but gave me a structure to work through my grief."

So much good in the little bit we had. We did the best we could.

A couple whose two children die of a rare life-limiting disease within 8 weeks of each other share how they think about the life they gave their children. Mom: I don't think you have to be 80 to live a good life, not at all. Dad: We were focused on how much amazing milestones and -- how much fun can these guys have, regardless of any timeline or number.

Processing grief happens in lots of different ways.

Grief counselor Nancy Frumer Styron discusses some of the different ways that people process grief-- privately and publicly. She shares some of the ways people memorialize their loved one. She describes the grief support group model as a way to find support.

Give yourself permission to go on with your life.

Grief counselor Nancy Frumer Styron describes how some people are unable to really function after the death of their child, including with their other children. It's important to understand that that kind of withholding limits one's ability to experience the full range of what's possible: other people still need you and your child wouldn't want this. She explains that some people worry that "carrying on" is a betrayal of the child who has died, but this is not helpful ... or true.

An on-going, never-ending state of being.

Grief counselor Nancy Frumer Styron discusses some of the different ways that people manage their grief following their child's death, and shares strategies that can be helpful to both the parents and the rest of the family. She notes the tricky question: how many children do you have in your family?

Time passing is really hard.

A bereaved mom talks honestly about how the passage of time is upsetting and scary. "It's hard to accept that I've been living a life for almost a year without him." She shares how scary it is to be moving further away from her child's life, how hard it is to let go, and how she worries about the impact this has on her identity as his mother.

I still talk to my network all the time.

Bereaved mom talks about the importance of the network and support system she had during her son't life and how it continues to be important to her now, in the year following her son's death.

I love looking at his things.

The parents of a little boy who died from SMA Type 1 share how they think about his 'STUFF' -- what they've held on to, how often they can look at it, how they incorporate it into their home. "The clothes I haven't been able to unpack yet."

One chapter is finished and another is about to begin.

A recently bereaved mother and father talk about the bittersweet, novel experience of now being able to travel freely with their other children.

The biggest transition is people not coming into the house everyday.

A recently bereaved mom talks about the poignant adjustment to how different the house feels and sounds and how different the flow of her day feels.

My grief has changed over the years but it still gets me at random times.

Parents of a little boy who died 6 years ago from SMA describe how they live with and experience their grief. Whereas at first Mom couldn't look at any babies at all, now she is able to look at them again. "Now I think they're cute again. I can play with my nephew." "If I think too hard, I get upset. But if I just go with it ...." "We always talk about Michael."

For me, not holding on to the details is helpful.

The mother of a 9year old daughter who died from cancer talks about how she doesn't hold on to details and that helps. "The blur is what helps me get through."

The funeral began the healing.

The mom of a daughter who died at age 9 from cancer talks about how they wanted the funeral to be positive, not depressing, a celebration. She describes elements of the funeral service. "I let Lydia's voice ring out reading a book about how much she loved life." People put roses on the coffin and a party and the kids sang and danced to her favorite song. "It didn't seem like a dark place. It was a celebration. It was a good way to start off the grieving process."

It’s like planting seeds in the garden, her life keeps growing.

The mom of a daughter who died at age 9 from cancer talks about her grief shifted over time. “You find a way to use your circumstances to extend their life. Anytime I can use Lydia's words, art, story and put it out into the world, then it's a gain for Lydia. Her life keeps growing."

He should be 8. I should be at Little League games.

The parents of a little boy who died from SMA Type 1 share a facet of their grief and how they think about what might have been.

We didn’t get any counseling or do a support group after.

The parents of a little boy who died from SMA Type 1 talk about they coped with their grief, including at his wake and in the years that have followed. The mom shares how she has found other ways to find support: reading vs. a support group.  They participate in a candlelight vigil on December 6; she visits his gravestone.

My fear is that I’m not spending enough time visiting him.

A bereaved father shares that he doesn't feel he is spending enough time "with" his son who has died. "When you drive away from the cemetery, you feel guilty." He shares strategies that help, including putting photos of his son everywhere. The mom shares her fears, which are different, including the notion that her son's grave is buried with snow and her guilt that she might want another child.

Keeping good memories and remembering her in positive ways.

A couple whose daughter has died shares how they find and keep her presence in their lives and manage their grief. The father shares how she came to him in his dream.

Try a group. there is something cathartic about grieving with other people.

The mom of a daughter who died at age 9 from cancer talks about a support group can help: knowing you're not the only one going through the grief makes a big difference. "Somebody who has also lost a child knows what to say. It's a hard journey to walk alone."

At Easter we go to the hospital with baskets and ducks.

Parents of a little boy who died from SMA Type 1 share the rituals they have started to honor their son's life.

Try to hold on to the good things that happened.

The mother of a son who died from SanFilippo Syndrome shares a few tips: take a deep breath, don't second guess yourself, let yourself feel sad when you're sad, don't read the books for a while, wear something every day that reminds you of your child.

Grief is a normal process but it can get complicated.

"When she was alive, we invited people in. We are learning how to help people connect with us again."

We are learning to be patient, rebuilding slowly.

"Now I have deep conversations about the burdens people carry."

I think the hardest part is after she's gone.

I put my heart at rest that they don't have any regrets

I'm inspired by them. I'm very proud of them.

"I find her in things. Sometimes it hits out of the blue."

"Now I can have the long view towards finding a treatment or cure."

Even though we’d thought about our life after Jessie died, it didn’t really help.

The continuing relationship with her providers, even after her death, has been important in my healing.

Answering the question, "How many kids do you have?"

You don't owe anyone an explanation and you don't have to feel good every day.

How I've been processing my grief.

So much good in the little bit we had. We did the best we could.

Processing grief happens in lots of different ways.

Give yourself permission to go on with your life.

An on-going, never-ending state of being.

Time passing is really hard.

I still talk to my network all the time.

I love looking at his things.

One chapter is finished and another is about to begin.

The biggest transition is people not coming into the house everyday.

My grief has changed over the years but it still gets me at random times.

For me, not holding on to the details is helpful.

The funeral began the healing.

It’s like planting seeds in the garden, her life keeps growing.

He should be 8. I should be at Little League games.

We didn’t get any counseling or do a support group after.

My fear is that I’m not spending enough time visiting him.

Keeping good memories and remembering her in positive ways.

Try a group. there is something cathartic about grieving with other people.

At Easter we go to the hospital with baskets and ducks.

Try to hold on to the good things that happened.