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.
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.
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.
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.
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?
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.
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 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."
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.