Working with the Medical Team

Wondering if your child is going to be t...

"To have the fortitude to push the medi...

A patient family encounter that grew me ...

The mother of a medically complex child�...

"Noah is a trainwreck on paper but he is...

A physician on the power differential be...

“I would like clinicians to know that ...

Being my son’s advocate: I can spend a...

A couple’s advice to fellow parents: �...

A Black couple reflects on unconscious b...

How we advocate for our son. “We are o...

We look for physicians who will be champ...

We just want a conversation about option...

A diagnosis in-utero of Trisomy 18: Bein...

"My race does play a role in my need to ...

The road to DNR: Only when the situation...

In the early scary days, with shock of d...

Feeling as a PARENT at home vs Speaking ...

A mother’s need to get as much informa...

Advocating for their child can be tricky...

When language is the barrier to getting ...

Distrust: We have given parents a lot of...

I really like working with parents. It i...

What can parents do to help clinicians h...

A physician on building alignment with t...

Tension can occur when a family’s love...

Some parents lack the courage to speak u...

A mother on what it takes to get listene...

Finding my voice to be my son’s voice.

To be your child’s advocate: “If you...

Finding my voice as my daughter’s moth...

“When we’re in the hospital, don’t...

Expressing emotion in front of the medic...

Finding my voice as my child’s advocat...

Advocating for my child: “If I don’t...

Building prognostic awareness re childre...

A neurologist acknowledges the frustrati...

A neurologist on validating for parents ...

A Rare Diagnosis: “I knew he wasn’t ...

NICU: All of this information is trickli...

The Parent-Palliative Clinician Partners...

A dad to fellow parents: “Be present, ...

“We were trying to prepare her for bec...

Osteosarcoma in an adolescent and ‘Tot...

Message to parents: Trust your intuition...

In the Room Recording: The primary care...

As parents we have the ability to hear i...

My Present-Self message to my Past-Self:...

In the Zoom Room Recording: What does a ...

Two brothers with cardiomyopathy-one die...

Cardiomyopathy: Learning the second preg...

A cardiac heart failure MD: Having goals...

Cardiomyopathy: A mom on building a trus...

Uncertainty: The doctor can’t have all...

A mom on decision-making: You do have to...

Bridging the Gap to the medical staff. I...

A mom to medical providers: “For you, ...

Shared Decision-Making: Parent and Provi...

The community-based nurse: A communicati...

palliative care nurse vs block nursing, ...

A nurse: I metaphorically lie down on th...

Parenting a Medically Complex Child: Bec...

Our Pediatrician provided stability.

Our pediatrician was the key that held e...

Our primary care pediatrician was our bi...

It seems to be a terrible waste if the p...

I want parents to know to be empowered.

I relied mostly on the early interventio...

When it’s not a good fit.

Now they say, “Whatever you say, Mom.�...

Our pediatrician has been nudging us: �...

It has taken the specialists 11 years to...

Doctors should know that getting past th...

What gets to me is all the medical appoi...

The Medical Team: You want a sense of be...

It becomes about a good fit.

You can change your mind re treatment an...

I Want Straightforward Answers

The Pediatrician and Shared Decision Mak...

Her pediatrician is out of this world!

As a parent, you know instinctively in y...

We said, “We want to be part of the So...

It was very difficult to disagree with t...

The medical machine is not very humanist...

We have a wonderful staff of nurses.