Courageous Parents Network

Join Courageous Parents Network, Dr. Karen Low, and a panel of parents to explore the multifaceted relationship between social media and families managing complex pediatric health conditions.

Learning objectives:
- Describe how parents of children with medical complexity and rare conditions engage with social media.

- Identify potential risks of sharing information on social media.

- Name potential benefits of seeking support through social media.

Register: https://bit.ly/49vSOFn

In Letters to Heaven, a recently bereaved mother, Annie Babcock, shares how she maintains connection and how she is processing her grief by writing letters to her daughter. Ashley’s words express the anger and palliate the pain. This blog is a tender peek into loss, yearning, and the enduring bond between a mother and child. Each letter maintains that connection that never truly ends.

Letters to Heaven A bereaved mother navigates grief after the death of her child, maintaining connection through writing letters to heaven - a spiritual message of love and...

Courageous Parents Network believes that the care of children living with serious medical conditions is a shared enterprise between parents and pediatric clinicians. Both want what’s best for the child and family and bring their respective values, priorities, and expertise to that work. CPN exists at this intersection, creating programs and resources designed to foster mutual understanding, confidence, and compassionate partnership.

CPN is delighted to host a Zoom screening of Shared Struggles, a documentary featuring three sets of parents and three physicians speaking candidly about their experience working with, educating, and learning from each other.

Registration is required. The screening is available to live attendees only. Learn more and register: https://bit.ly/4tyYHZH

There is the motherhood we expected, and then there is the one we actually get and live.

This Mother’s Day, three Courageous Parents Network team members, each currently parenting a child with medical complexity, share what it means to mother in a reality shaped by intensive caregiving and uncertainty. Their reflections hold the stretch, the weight, and the quiet, enduring devotion of this parental journey.

To all of the beautiful, powerful (seemingly) tireless mothers in the Network, we wish you a Happy Courageous Mother’s Day. Enjoy these honest reflections.

READ: https://bit.ly/48S5g24
Laura Will, Naomi Williams, Lindsey Topping-Schuetz

In children with severe neurological impairment (SNI), communication between the brain and the gut can be disrupted, affecting how their digestive system works.

These issues can cause:
- difficulty swallowing
- slow stomach emptying
- poor movement of food through the intestines
- trouble absorbing nutrients.

While medications and other therapies can sometimes help, TPN may be considered when a child cannot get enough nutrition by mouth or a feeding tube.

To learn more, visit: https://bit.ly/4tWwixD"

Parenteral Nutrition or Total Parenteral Nutrition (TPN) What Your Child May Experience Total Parenteral Nutrition (TPN) is a way to give nutrition when a child’s stomach and intestines cannot be used. In other...

Calling all parents/caregivers!

Are you interested in telling your story, promoting pediatric palliative care, and advancing the mission of Courageous Parents Network? Bring your experience and voice to CPN as a Parent Champion.

Applications due by May 22nd!

Learn more and apply: https://bit.ly/4niEB4A

Kelsey Stanczyk

Lauryn Mason used to use social media as a quiet escape. Scrolling, but not sharing.

That changed after motherhood took an unexpected turn. She felt isolated, even invisible, as she realized how few spaces reflected the kind of motherhood she was suddenly living.

What followed was a long stretch of silence, followed by small, vulnerable shares. The response was surprising, as was the unexpected sense of connection that came through them.

For anyone navigating medically complex parenting, this blog is a lovely reflection on what it means to move between privacy, fear, and the need to be understood.

Sharing What I Once Hid: Social Media as Connection in Complex Motherhood Sharing online: how social media helped one mom of a medically complex child find community, reduce stigma, and feel less alone in motherhood.

Social media has transformed how families navigate complex medical journeys, creating unprecedented opportunities for connection, information sharing, and support.

For parents of children with medical complexity and rare conditions, online platforms can offer vital lifelines to communities who understand their unique challenges. Yet these same spaces also present risks that deserve careful consideration.

This webinar, featuring Dr. Karen Low and a panel of parents, explores the multifaceted relationship between social media and families managing complex pediatric health conditions.

Learn more and register: https://bit.ly/4295JsV