What Matters Most to Your Family
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Mom: I know that he has completed everything in life. I look at the glass as half full.
“I can’t save my son but I can make his life better.”
We just want a conversation about options: “Are we going to get somebody that cares or somebody that just wants to talk about diagnosis and prognosis.”
How we advocate for our son. “We are over the system telling us the best plan of care. We are going to do this together or we are not going to do it with you.”
Advocating for my child: “If I don’t feel that provider is safe or respectful of my daughter, I go ahead and have them removed.”
A pediatric neurologist on talking with patient families @ what they are willing to tolerate: “Are we having enough good days?”
Helping families prioritize for good days vs the task list: The rocks-in-jar analogy. Big ones first.
Future vs Today: Helping families attend to what really matters so they don’t miss being present with the child.
Avoiding a traumatic medical death: Learning our baby could not tolerate intubation and deciding he would not have it again.
Regret re decision-making about interventions: “If we as parents center our child’s experience [not our fear of guilt], with every choice, I don’t see how we can go wrong.”
Dropping the illusion of control: Shifting from progress to love and play
Evolving as parents: from feeling shocked and vulnerable to trusting intuitions about what our child wants
Finding the way forward: “Giving her the life she was telling us she wanted in a condensed period of time.”
We lived in a bubble, which was a beautiful thing. We could appreciate the little things.
From the PICU to the Home ICU
We were actively protecting her from things that wouldn’t be right for her.
What does a “good day” look like? Emma goes to VOTE!
Every time we achieved an idea we wanted to pursue, it gave us more strength to do the next one. The memory of what you were able to achieve is what we actually remember.
A mom on finding space for other people’s joy.
Our son. Our effort; His edge of suffering; the Outcome
Decision-Making: the gift of time to figure out what your child needs and what you can handle. (CPAP vs Trach)
Parenting a Medically Complex Child: Shifting my expectations for his life
From a Nurse: How I first get to know a family and their goals
Tay-Sachs: We learned to avoid the hospital if possible
A nurse: “I have struggled with some decisions families have made.”
A mom on every night with the CPAP (not Trach): parents learn what they can tolerate.
A Mom reflects on when quality of life bumped into quantity: We asked, “What are we doing?”
Child Life and setting expectations: It is not about ‘fixing’ the kids. It is about quality of life.
Finding Hope
Intractable problems and a new Baseline: When the hospital can’t change the outcome
No one wants to feel like they’re ‘giving up' on their child.
Palliative Care Focuses on All the Living
Parenting a medically complex child: Letting go of the PUSH and the expectations.
I did not want to isolate him. He loves school.
When he wants to do something, you just want to move heaven and earth.
MD: Parents--Don’t underestimate the importance of your own goals and values
We Are Going to Take One Day at a Time
I want providers to know that there needs to be some flexibility.
Always hoping we can make it a little bit better.
Palliative Care made it possible for us to go home and live.
Stopping curative medication.
Educating parents about the Pros and Cons of the decisions can help with their regrets
Enough is enough.
For each intervention, we asked, “Is this going to benefit his quality of life or our family’s quality of life?”
He's doing great. He's fantastic, even if his normal is terrible.
Decisions start from Day One.
Offering parents information and giving them the space to reflect: Are we getting the right balance?
Can we help you:
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From our Blog:
- The Endurance We Didn't Choose
- 7 Things Your Patient Families Would Like You to Know
- Adventure Awaits: Safe Travel Tips from a Seasoned Mom
- The Season of Giving and Receiving
- An Evolving Definition of What It Means to Be a "Good" Parent
- Find Your Truths to Hold Onto
- What Guides You? And is Your Medical Team Following?
- Making Informed Decisions about Our Daughter's End of Life
- Collaborative Goal-Setting
- A Parent's Narrative of Their Child is the Baseline
- Name It to Tame It
- Finding Accessibility and Inclusion Abroad
- Palliative Care Gives Parents Another Way to Protect Their Child and Be Heroic
- Mothers are Warriors. But Some Battles Can’t Be Won.
- “How Are You Doing?"
- A Letter to the Medical Residents at My Son's Hospital
- To Human Kindness