When the Time Comes

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.'

How much longer is this going to take? I felt guilty for feeling I couldn’t deal with weeks of her struggle.

The mother of a 13-year old with Sanfilippo speaks candidly about the last few weeks of her daughter’s life, how challenging it was to find the balance between pain management and alertness, accepting that she was dying, bringing on hospice, wondering how long this period would last, being there at the very end, and then the hour or so after. That is an experience a parent should NOT have to live through.

Two children with rare disease in one family; Two different deaths.

Parents in one family with two young children who die from a rare disease describe the two children’s separate deaths and how they differed: one died quickly with no pain medication, one slowly with a lot of medication required. "You think you know what you're going to do. You make plans but like birth, things don't always go according to the plan. You have to be flexible."

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."

Because we got to do it twice, we learned what we wanted from the first time. It was so draining to carry other people's sadness.

Parents of two children who died within weeks of a rare metabolic disorder compare how they handled the period after their first child died vs when their second died: a full house with lots of people vs a quiet house.

I did feel a sense of relief after the kids died. They were so sick.

A bereaved mother and father share how they don't feel any quilt about the relief. The children were suffering so so much. They were so so broken.

I remember his breathing but I don’t remember other stuff.

Parents of a little boy with SMA describe the last 11 days of his life and his death, including his struggle breathing and the decision to take him off the ventilator. All the preparation in the world doesn't prepare you for that moment. "We walked down the hall and said it's time."

Wanting desperately to know what it looks like.

Pediatric psychologist and grief counselor Nancy Frumer Styron talks about how parents want to KNOW and about helping parents be present for their child's death. And a mom talks at length about preparing for the end of her son's life, in the hospital. "I did feel quite prepared."

It’s different for every child.

Pediatric psychologist talks about the end of life can look like for children.

A child can be comfortable right to the end.

A bereaved couple talks about how children can be comfortable all the way through the end-of-life and that the death can be peaceful.

You are capable of seeing this through.

A bereaved parent talks encourages parents of children with a life-limiting illness to know they can see their child's end-of-life through the death. You are braver than you can possibly imagine.

What we can expect in the final days.

A pediatric palliative care social worker gently describes the typical physical symptoms of what end-of-life looks like, as the child's body slowly shuts down.

We encourage holding the child.

A hospital chaplain shares that one of parents' greatest fears is that their child will be in pain. The good news is that care teams are generally able to manage pain -- especially the palliative care team. The other fear is that the child is afraid. We encourage parents to hold their child. Having your child die in your arms is heartbreaking but it is a peaceful, beautiful way.

Whether you want your child to die at home or in the hospital is a very personal decision.

A hospital chaplain notes that there are pros and cons to both and each family will have their own needs and experience that guide their decision. The palliative care team and chaplain can help parents explore their fears and worries around this decision.

I did go through a brief period after where I wondered if I’d make the right decision.

The mom of a son with SanFilippo Syndrome shares that she briefly second-guessed her choice to turn off the machine when her son was intubated at the very end of his life. "But Ben died in the way that he lived. He let us know that he was tired. It was time." The father shares his realization at the end that Ben was "working so hard to stay with us."

I wasn’t afraid because I’m a planner

A mom talks about how she'd planned for her son's end-of-life, but he had his own plans. Her primary concern was the other siblings. She anticipated that the real problem was going to be AFTER.

His final moment was so peaceful and it was perfect for him.

A mother shares how peaceful her son’s final days were and how proud she is of the full life that he had. He did a lot in his 8-and-a-half years. And “when he took his last breath, all those years came together and it was a perfect moment for him.”

It was the first time I exhaled in seven years.

Seven years after her son’s diagnosis, in the hours following his death, a mother exhales.

The last 24 hours: We were not ready for it. “Wait a minute, we’re off script.”

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss the last 24 hours of Ben's life and how they were faced with the question of intubation. Mom: "How did I get in this bad movie? I don't know what to do and I'm scared." Dad: "It wasn't what we'd planned but it gave us time to call our family." Palliative care helped us feel less trapped and helped advocate for us when we were occupied being scared and sad. Mom describes turning off the machine and everyone being in the room.

The last hour of Talon’s life, and letting go.

A father and mother describe the last hour of their son's life, at home, with hospice. It was peaceful, emotionally painful, and powerful. The father describes carrying him to the hearse.

It was beautiful.

A father describes the last few days of his 15-year old daughter's life as she prepared to 'pass through to the other life and go with God.' He describes how full of peace he felt at the moment when she died. "I said, Thank you God."

I did go through a brief period after where I wondered if I’d make the right decision.

The mom of a son with SanFilippo Syndrome shares that she briefly second-guessed her choice to turn off the machine when her son was intubated at the very end of his life. "But Ben died in the way that he lived. He let us know that he was tired. It was time." The father shares his realization at the end that Ben was "working so hard to stay with us."

I’m not ready but Ben is.

The mom of a son with SanFilippo Syndrome and their pediatric palliative care doctor talk about how parents can hear and know what their child needs, including when they are ready to die.

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

How much longer is this going to take? I felt guilty for feeling I couldn’t deal with weeks of her struggle.

Two children with rare disease in one family; Two different deaths.

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

Because we got to do it twice, we learned what we wanted from the first time. It was so draining to carry other people's sadness.

I did feel a sense of relief after the kids died. They were so sick.

I remember his breathing but I don’t remember other stuff.

Wanting desperately to know what it looks like.

It’s different for every child.

A child can be comfortable right to the end.

You are capable of seeing this through.

What we can expect in the final days.

We encourage holding the child.

Whether you want your child to die at home or in the hospital is a very personal decision.

I did go through a brief period after where I wondered if I’d make the right decision.

I wasn’t afraid because I’m a planner

His final moment was so peaceful and it was perfect for him.

It was the first time I exhaled in seven years.

The last 24 hours: We were not ready for it. “Wait a minute, we’re off script.”

The last hour of Talon’s life, and letting go.

It was beautiful.

I did go through a brief period after where I wondered if I’d make the right decision.

I’m not ready but Ben is.