Courageous Parents Network

Fathers of children with medical complexity are often overlooked and underheard. Join CPN and a panel of four fathers who will speak candidly about life, love, and parenthood on this journey. This session will:

1. Identify at least two ways that fathers of children with medical complexity are uniquely impacted by their child’s condition and by interactions within the healthcare system.

2. Examine how provider assumptions about fathers’ caregiving roles, perspectives, or capacities influence the paternal experience within medical settings.

3. Utilize insights shared by panelist fathers to inform more equitable, family-centered approaches in their own practice or advocacy work.

Learn more and register: https://bit.ly/4AhMptn

What does it mean to make a “good” medical decision when there is no clearly right answer?

For parents of medically complex children, decisions about treatment often involve competing priorities: longevity, quality of life, family impact, uncertainty,

We welcome our newest Blogger in Residence, Morgan Motsinger, as she reflects on the decision not to pursue a tracheostomy for her daughter with Sanfilippo syndrome—and what she learned about decision-making, palliative care, and living with the choices we make on behalf of our children.

When medicine can offer more time, how do we decide whether that time will meaningfully add to a child’s life? Morgan raises a difficult question worth considering: What regrets are we willing to live with?

I Didn’t do Everything I Could For parents of medically complex children, there is rarely a “right” choice. A mother reflects on regret, medical decisions, and quality of life.

Many families incorporate therapies such as:
- Massage
- Music therapy
- Stretching
- Essential oils
- Reiki
- Pool therapy
- Vibration
- Acupuncture

Along with comfort measures to help their child feel more comfortable, such as:
- Rocking
- Warm baths
- Repositioning
- Weighted blankets
- Venting a G-tube

Which strategies have helped your child the most?

Sharing the Ring Theory of Support with your loved ones can help set expectations, reduce misunderstandings, and remind everyone of an important truth: parents know their child best and are making the decisions they believe are in their child's and family's best interest.

Find the CPN one-pager on the Ring Theory of Support here: https://bit.ly/4cxiT8M

Share your back-to-school photos with us in the comments! Wishing everyone a happy new school year.

What happens when a mother’s deepest instinct to protect her child from suffering can no longer protect him?

After her son’s childhood trauma is followed years later by a cancer diagnosis, one mother is forced to confront the limits of her faith and her ability to make things better. “I am powerless to take away my child’s suffering. I can only bear witness to it without looking away.” Peace became elusive, but she learned to remain present. She redefined success not as fixing what cannot be fixed, but as finding the courage to keep showing up in the countless small ways a mother can.

To Stand Beside Suffering A mother confronts her son’s cancer and suffering, questioning faith and parenting while reimagining courage and peace in the face of powerlessness.

When her 24-year-old son was diagnosed with stage 4 colon cancer, Gabriella’s world shifted. But the hardest part wasn’t only the diagnosis—it was the constant transitions that followed: hospital to home, home to chemotherapy, treatment to waiting, and caring for a sick child who was also becoming more independent.

“Caring for an adult child sometimes means letting go of the kind of control you once had while finding new ways to remain present.”

In her blog, this courageous mother reflects on the uncertainty, grief, and the simple, unexpected moments of purpose that come with caring for an adult child with serious illness.

Learning to Live in the Transitions: Caring for an Adult Child with Stage 4 Cancer Caring for an adult child with stage 4 cancer means navigating constant transitions. One mother reflects on letting go, adapting, and learning to stay present.