Other Children / Siblings

Her sharp decline was hardest on her brother. He thought he had more time.

The mother of two children speaks candidly about how the younger brother experienced his sister's fast decline. He wanted to be able to say 'good-bye' when she was still alert and engaged. Heartbreaking, because 'how could that have happened? But when you're 10, that's what you want.'

More Children? It was important to talk to a third party about what we were thinking.

A mother of a child with Sanfilippo and her genetic counselor talk about what happens once parents know that they are both carriers and have an affected child, and how a genetic counselor can help them weigh all the issues and anxiety involved in the decision to have another child.

Sanfilippo /MPS: The dreaded question. How many children do you have?

“I don’t always answer the question the same way.” The mother of two children, one who died from Sanfilippo at age 13, speaks candidly about how she answers this question and how she and her husband can differ.

National Siblings Day: Celebrating the Courageous Brothers & Sisters

Courageous Parents Network empowers families, <strong>including siblings</strong>, caring for children with life-limiting illnesses. We help siblings tell their stories and celebrate their own courage and love. Here Jessica talks about being Rachel's big sister over nearly 2 decades. &nbsp;

Helping Siblings Cope, From the Parents

One of the top concerns for parents of children living with a serious illness is the well-being of their other children. Listen to these courageous parents talk about how they support these kiddos.

Helping Siblings Cope, from the Siblings

Siblings of children with serious illness are courageous, awesome, wise, kind, compassionate and inspiring!

Julia grew up quickly, in the NICU, in waiting rooms.

Parents of two children with a rare metabolic disorder talk about how their big sister become so comfortable in the hospital and with doctors, but what a toll is also took on her young childhood.

Death of a sibling from illness: We let Julia, the big sister, see the dead body.

Parents of two children who die from a rare metabolic disorder learn from the first child's death that their oldest daughter needed to see the dead body to help understand death.  The pastor helps them find a way to show the body." Julia was capable of saying good-bye to her brother's body." "You can't have great love without great loss."

It's important to talk from the beginning about the other children.

Pediatric psychologist and grief counselor Nancy Frumer Styron stresses the importance of acknowledging that there are other children/siblings and that there are many ways they will be impacted. A mom shares her perspective of how her younger daughter's illness might have impacted her older sons. A couple discusses the professional counsel they received about what to tell their two-year old daughter about her baby sister's illness.

Always give them a sense of what’s going on.

Pediatric psychologist Nancy Frumer Styron discusses the importance of giving the siblings a sense of what's going on and that they can be a part of the experience too. A therapist can help with this. A couple talks about how they shared everything with their older sons about their brother who was sick.

Telling Jake about his sister’s illness.

A mom shares how she told her 9-year old son about his younger sister's illness.

She’s very closed off about it.

Parents of a young boy with SMA Type 1 talk about how his big sister, considerably older, is struggling with his death. "He was her buddy."

They’ve been exposed to so many different types of people.

The mother and father of a 2-year old with a rare terminal illness discuss how they try to keep things normal for their family and other children, and how their children are accustomed now to be being with children with special needs.

Dividing, Getting Out, Staying In, Accepting Help.

A couple shares some of the strategies they used to spend time with their healthy children and to also have the family together as a whole.

You have to try to do what’s best for all your children.

The mom of a 12-year old with SMA Type 1 talks about she allocates and balances her time amongst her three children; and the impact that having a sibling with a trach has had on the other two children.

Kyla was in grief counseling right off the bat.

Parents talk about the impact their son’s illness had on their older daughter over the years and the valuable support she received during his life.

They think of her just as a cute little sister.

<em></em> Parents of 3 children under 8, the youngest of whom has a rare fatal illness, talk about how their older children think about their sister.

I had to teach the teachers about the situation at home.

A mother and father talk about educating their other children’s teachers about their son’s illness and prognosis and about the social environment at home.

Kyla always introduced her friends to William.

A mother shares how her older daughter shared her brother with her friends and how the friends from younger years were totally normal with William.

How it has been for little brother John (age 4)

Parents talk about their 4-year old’s understanding of his older brother’s illness and death.

He taught her compassion and empathy towards others.

A mother shares her older daughter’s anger towards children calling someone a ‘retard.’

I can’t comfort them as much as I want to.

A mom talks about how difficult it is to see her other children be sad and suffer and not be able to fix it.

The sibling bond was kind of broken by cancer.

The mother of a 9-year old daughter with cancer and her older brother talks about the impact that the demanding treatment protocol and illness dynamic had on the sibling relationship.

We didn’t want him to have regrets later in life that we didn’t include him in the conversation.

The mom of a 9-year old daughter with cancer talks about they included her older son, age 11, in the conversations about end-of-life.

Be gentle with yourself as you parent your other children

A mom talks about the importance of recognizing that you are doing the best you can.

This isn’t happening to them, it’s happening with them.

Parents of a son with Sanfilippo Syndrome talk about how they talked about Ben with his healthy siblings. We tried to help them understand how it was going to impact them. When we had to decide about spinal surgery, we did involve them in the conversation. They were older in their teens and we tried to involve them in issues that changed our family structure.

Being their mom is a joyful thing.

The mother of two teenage daughters, one of whom has the life-limiting Canavan disease, talks about the joys and lessons she has received from her children.

If the child is asking the question, it’s because they need to know.

A mom of two daughters, one of whom has the life-limiting illness Canavan disease, talks about she always told her typical, unaffected daughter the truth, including about the genetics of the illness -- and her daughter's response. Simple answers don’t work for her.

It would be absolutely bananas to expect them to figure this out.

Parents of 3 children under 8, the youngest of whom has a rare fatal illness, talk about how they talk about Adelaide’s condition with the older children. They’re too young to understand the long term prognosis. They live in the present.

She told me how important it is to know the sad stuff too.

The mom of two teenage daughters, one with Canavan, talks about how her older, healthy daughter doesn't want to be protected from the sad reality that children with Canavan die, and how they talk about the big picture, the good and the bad. One day at a time.

It’s important to know what the child is really asking.

Pediatric psychologist Nancy Frumer Styron talks about how important it is for parents to be prepared for kids' tough questions: a third party can help parents anticipate what the questions are going to be and prepare age-appropriate, honest answers. She also stresses the importance of clarifying what the child is REALLY asking and finding out what the child already thinks: what is the child's frame of understanding and real question?

It’s important to know what the child already thinks.

Pediatric psychologist Nancy Frumer Styron notes that children may think or know things that parents either don't realize or that are incorrect and it's important to figure that out and clarify. A therapist can help with this.

Coming full circle, I think it’s been a gift for him

Parents of two sons talk about how their older son Ryan’’s relationship with his younger brother Jake’s disorders and prognosis has evolved. The middle school years were especially hard. The parents have tried to make sure Ryan’s life wasn’t always about Jake.

Parents need to own how stretched they feel.

Pediatric psychologist Nancy Frumer Styron discusses that parents need to note how stretched they feel and shares strategies for addressing this: talking directly to the other children, dividing their time, attending the special events, teaching communication skills to other children, continually checking in.

I don’t want him thinking about his brother’s life expectancy.

A mom talks about how she talks about her son who is sick with her older son (age 21)

I worry in phases about how Jake’s death will affect Ryan.

Parents talk about their older, healthy son’s awareness of his younger brother’s prognosis and how they have worried about how his brother’s death will affect him.

Creating memories that siblings will remember for the rest of their lives.

A pediatric palliative care social worker talks about how she and her team work with siblings to assess how they're doing and what their support system is, and to help siblings make memories with the child who is sick, memories they will have for a lifetime.

She wanted to have a normal typical world.

The mom of two daughters, one of whom has a life-limiting illness (Canavan) talks about how her older daughter, when younger, didn't want to over-associate with medically complex children when in Kindergarthen, but then changed as she matured and became the proud big sister.

We never held anything back from them.

A mom talks about how her older children have been told everything the parents know about the youngest, affected daughter: they’ve been going through it with us.

We’re still trying to figure out the balance piece.

A mother and father talk about the tricky job of providing 24/7 care to their daughter who is sick while also spending good time with their other children. Present vs. Future focus. We never know if we’re doing it well.

We postponed Make-a-Wish until Jessica was old enough to remember it.

The mom of two daughters, the younger one who has the life-limiting illness Canavan, talks about how the grief they first experienced with the diagnosis, and then how they didn't want to take the special trip until their older daughter was old enough to remember it. "I prayed over the years that Rachel would live long enough so that we could go to DisneyWorld and Jessica would have the memories."

Jessica has asked, “Will I have to take care of Rachel?”

The mother of two teenage daughters, one of whom has the life-limiting illness Canavan disease, talks about how her older daughter talks about her future in the context of her younger sister's illness.

We talk about what things would be like if Rachel were typical.

The mom of two teen daughters, one of whom has the life-threatening illness Canavan disease, describes the interesting mix and how she thinks about the What Ifs. "I have a bumper sticker on my dresser -- I plan, God laughs."

What would Rachel say to Jessica if she could speak?

A mom talks about the bond her two daughters have with each other and what her medically complex, cognitively impaired daughter might say to her big sister if she could.

Our goal is to get them as OK with this as possible, before.

A mother shares her concerns for how her daughter’s illness is affecting her other children and specifically how they will respond when their sister dies. “I worry that I’m not going to be strong enough to be strong for them.”

They never complained about being with her at the hospital late at night.

A father describes an aspect of 'their new normal life' -- bringing his two other healthy children to be at the hospital many nights with their sick sister. “Because we were all on the same page, they were able to put 100% to the situation.”

Sometimes we let others stay with Kristie so we could be alone with our other children.

Parents of a 16-year old being treated for aggressive leukemia talk about how they didn't want to ignore their two other children while their daughter was in the hospital (for over a year). They let others stay with Kristie sometimes so that they could be home with their other children. That time also allowed them to speak openly with their other children about Kristie's illness 'without making her sad.'

We tell them this is going to be a tough road. They get the situation.

Parents of a 22-month old with leukodystrophy and 6 other children talk about how understanding their children are and how they pitch in and help make it all possible, and how specific they are with their children about what they need from them.

Jessica, on being Rachel's big sister. Rachel has Canavan Disease.

The full interview (18:00) with Jessica, age 17, about what it means to her to be Rachel's big sister and how she thinks about her sister's life-limiting condition.

It’s important not to lie to them.

Pediatric psychologist Nancy Frumer Styron talks about how children will have questions about their sibling who is sick and that it's important not to lie to them. A mom talks about how they are open with the big sister, age 13.

If you’re paying attention, you’ll see how the others are doing.

The mother of a 22-month old with leukodystrophy and 6 other children talks about how she observes each child interacting differently with their sister and through her observations is able to see how they're doing.

Alex's siblings, Zach and Zoe

Alex's older brother and younger sister share a few of their thoughts about having a medically complex brother and the attention he requires.

Her sharp decline was hardest on her brother. He thought he had more time.

More Children? It was important to talk to a third party about what we were thinking.

Sanfilippo /MPS: The dreaded question. How many children do you have?

National Siblings Day: Celebrating the Courageous Brothers & Sisters

Helping Siblings Cope, From the Parents

Helping Siblings Cope, from the Siblings

Julia grew up quickly, in the NICU, in waiting rooms.

Death of a sibling from illness: We let Julia, the big sister, see the dead body.

It's important to talk from the beginning about the other children.

Always give them a sense of what’s going on.

Telling Jake about his sister’s illness.

She’s very closed off about it.

They’ve been exposed to so many different types of people.

Dividing, Getting Out, Staying In, Accepting Help.

You have to try to do what’s best for all your children.

Kyla was in grief counseling right off the bat.

They think of her just as a cute little sister.

I had to teach the teachers about the situation at home.

Kyla always introduced her friends to William.

How it has been for little brother John (age 4)

He taught her compassion and empathy towards others.

I can’t comfort them as much as I want to.

The sibling bond was kind of broken by cancer.

We didn’t want him to have regrets later in life that we didn’t include him in the conversation.

Be gentle with yourself as you parent your other children

This isn’t happening to them, it’s happening with them.

Being their mom is a joyful thing.

If the child is asking the question, it’s because they need to know.

It would be absolutely bananas to expect them to figure this out.

She told me how important it is to know the sad stuff too.

It’s important to know what the child is really asking.

It’s important to know what the child already thinks.

Coming full circle, I think it’s been a gift for him

Parents need to own how stretched they feel.

I don’t want him thinking about his brother’s life expectancy.

I worry in phases about how Jake’s death will affect Ryan.

Creating memories that siblings will remember for the rest of their lives.

She wanted to have a normal typical world.

We never held anything back from them.

We’re still trying to figure out the balance piece.

We postponed Make-a-Wish until Jessica was old enough to remember it.

Jessica has asked, “Will I have to take care of Rachel?”

We talk about what things would be like if Rachel were typical.

What would Rachel say to Jessica if she could speak?

Our goal is to get them as OK with this as possible, before.

They never complained about being with her at the hospital late at night.

Sometimes we let others stay with Kristie so we could be alone with our other children.

We tell them this is going to be a tough road. They get the situation.

Jessica, on being Rachel's big sister. Rachel has Canavan Disease.

It’s important not to lie to them.

If you’re paying attention, you’ll see how the others are doing.

Alex's siblings, Zach and Zoe