Podcast Summary: MS Living Well – Parenting with MS: Finding Strength, Joy, and Resilience

Date: August 19, 2025
Host: Dr. Jamie Holloman (Missouri Baptist Medical Center)
Guests: Dr. Amy Sullivan (Cleveland Clinic) & Julie Stamm (Author of Some Days)

Episode Overview

This episode focuses on the unique experiences and challenges faced by parents living with multiple sclerosis (MS). Through expert insights and personal stories, the episode explores the emotional, practical, and communicative aspects of parenting with MS. Listeners hear from Dr. Amy Sullivan, a clinical psychologist specializing in MS, and Julie Stamm, author and MS advocate, who share strategies for navigating guilt, fostering resilience, communicating with children, and finding joy amidst uncertainty.

Key Discussion Points & Insights

1. Integrating Mental Health in MS Care

• Dr. Amy Sullivan highlights the importance of holistic care at the Cleveland Clinic’s Mellon Center, where mental health is a normalized and integrated part of MS management ([03:14]).
  • Melon offers a variety of support groups: young professionals, caregivers, men’s, human-animal bonding, sleep/fatigue, and a general MS group.
  • Community and relatable support are crucial: “Seeing someone in a similar situation, struggling with the same things… can be really incredibly therapeutic.” – Dr. Holloman ([05:01]).
• Mental health stigma has lessened but addressing emotional needs remains a core component.

2. Common Parenting Challenges with MS

• Guilt is a pervasive emotion for many parents with MS, stemming from the feeling that they can’t meet expectations or be the parent they envisioned ([05:23]).
• Strategies to “readjust your sails” and reframe expectations can lead to deeper purpose and perspective.
  • “You learn more lessons when there’s some choppy waters… Just because you’re not sailing in the same direction doesn’t mean that your life can’t be meaningful and powerful and filled with purpose.” – Dr. Sullivan ([06:44]).

3. Managing Symptoms as a Parent

• No "one-size-fits-all" solution; personalized fatigue management is critical ([07:24]).
  • Energy banking: Plan activities for times of highest energy, and ensure rest for both parent and child.
  • Weekly and daily planning is recommended to “know your body and your energy level” ([08:08]).

4. Talking to Children about MS

• Open, age-appropriate communication is emphasized.
  • Resources like Mommy’s Story and Daddy’s Story are recommended for young kids ([08:52]).
  • Children of parents with MS often develop resilience and empathy.
  • “If we’re raising resilient and empathetic people and kind people in the world, we’re doing something really right.” – Dr. Sullivan ([09:54]).

5. Navigating Expectations & Social Pressures

• Social media can heighten anxiety about “perfect parenting.”
  • “Stay off those sites if they’re causing anxiety... This is your life, and you get one chance to be a parent.” – Dr. Sullivan ([11:20]).

6. Resilience, Gratitude, and Joy

• Practicing gratitude, even for the small moments, can significantly improve well-being.
  • “What a beautiful example we’re setting for our families.” – Dr. Sullivan ([12:27]).
• Apologizing and owning mistakes is part of healthy parenting and models good emotional behavior for children ([11:36]).

7. Family Planning and MS

• Decisions about having children should be made in consultation with medical professionals.
  • Heartwarming story: Two patients found love (and parenthood) after meeting in the infusion room ([13:17]-[14:48]).
  • “My patient would have never met her husband had she not had MS. So I think there’s a little gratitude for MS there.” – Dr. Sullivan ([14:51]).

8. Coping with Relapses

• The “three by three by three rule”: First three weeks post-relapse are hardest; by three months, symptoms and fear move more to the background ([15:32]).
  • “Allow yourself to grieve. Allow yourself those moments of sadness or anxiety… until you get to the point where it’s not all consuming anymore.” – Dr. Sullivan ([16:34]).

9. Final Advice for Parents with MS

• “We get one chance to parent, and so don’t let MS steal that from you.”
• Focus on managing— not letting MS define you ([17:00]).

Julie Stamm’s Perspective & Personal Story

Writing Some Days and Parenting Openness

• Julie chose radical honesty with her son from birth, believing children are resilient and including them makes MS less scary ([18:49]).
• On inspiration: She wrote nightly letters to her son about good and bad days. Through these discussions, she saw her son’s perspective was often optimistic ([20:11]).
  • “Kids have these wild imaginations… Sometimes it’s literally just cuddling on the couch that’s the most exciting part for them.”

Dealing with Guilt and Modeling Empathy

• Julie’s communication and visibility in her son’s life foster empathy and inclusivity among his classmates ([21:31]).
• "Every parent has guilt… but in spite of MS, our children come out stronger, more resilient. My son is the one that will make sure everyone has food before he does. They are so empathetic and kind.” – Julie Stamm ([22:03]).
• Encourages others not to let MS be the reason to forgo parenthood ([22:15]).

Diagnosis Journey and Chronic Grief

• Seven years to diagnosis; initial symptoms were bladder/bowel issues ([22:32]).
• Julie allows herself "one day to grieve" new losses, but emphasizes adaptation and finding community.
• “With COVID, we all got a little taste of what it’s like to have MS… Ours won’t go away, but we’ll continue to fight and go through it and just adjust and adapt.” ([23:13]).

Facing Uncertainty with Hope

• Julie acknowledges ongoing struggles but maintains optimism for future treatments and a possible cure ([24:05]).
• Advises newly diagnosed to surround themselves with positive influences: “If you Google anything, it’s going to come up with negative stuff. So try and, like, surround yourself with the people that will inspire you to stay hopeful, because there is hope.” ([25:12]).

Conversations with Children: Avoiding Burden

• Transparency helps prevent misconceptions and reduces children’s fear.
  • “If you make it light, it will be light for them. If you make it heavy, it’s going to be a burden.” – Julie Stamm ([26:20]).
• Creativity helps on tough days; children mostly want presence, not perfection ([27:13]).

Community, Empowerment, and Main Messages

• Many children have their own “difference.” Emphasizing pride in difference, not shame ([27:55]).
• “All you have to do is give your children love and support and you’re going to be just fine.” ([28:50]).

Memorable Quotes & Moments (with Timestamps)

• “You learn more lessons when there’s some choppy waters… your life can still be meaningful and powerful.” – Dr. Sullivan ([06:44])
• “Best thing we can do is teach our kids the same lessons we’re learning.” – Dr. Sullivan ([07:46])
• “If we’re raising resilient and empathetic people and kind people in the world, we’re doing something really right.” – Dr. Sullivan ([09:54])
• “Stay off those sites if they’re causing anxiety… You get to decide what your family looks like.” – Dr. Sullivan ([11:20])
• “I wrote him very open letters on the days that I felt like I failed him as a mom.” – Julie Stamm ([20:11])
• “Every parent has guilt… but in spite of MS, our children come out stronger, more resilient.” – Julie Stamm ([22:03])
• “If you make it light, it will be light for them. If you make it heavy, it’s going to be a burden.” – Julie Stamm ([26:20])
• “All you have to do is give your children love and support and you’re going to be just fine.” – Julie Stamm ([28:50])

Timestamps for Key Segments

• Introduction & episode theme: [00:05]
• Dr. Amy Sullivan’s role at the Mellon Center: [01:59]–[03:14]
• Mental health resources and support groups: [03:14]–[05:01]
• Parenting challenges: guilt & coping: [05:23]–[07:07]
• Managing fatigue and planning: [07:24]
• Talking to kids about MS: [08:39]–[10:14]
• Advice on social pressures and modeling gratitude: [11:05]–[12:57]
• Family planning with MS: [13:06]–[14:51]
• Dealing with relapses: [15:32]–[16:46]
• Final advice for parents: [17:00]–[17:59]
• Julie Stamm on writing Some Days and open parenting: [18:45]–[20:11]
• Guilt and empathy in parenting with MS: [21:17]–[22:26]
• Diagnosis journey and adapting to change: [22:32]–[23:41]
• Facing uncertainty and fostering hope: [24:05]–[25:26]
• Advice on sharing diagnosis with children: [25:47]–[26:38]
• Adapting parenting style to symptoms: [27:13]–[27:48]
• Empowering children through difference: [27:55]–[28:27]
• Julie’s key advice for parents: [28:37]–[29:01]

Conclusion

This episode emphasizes that parenting with MS is both possible and rewarding, though challenging. With proper support, open communication, and self-compassion, parents can raise empathetic and resilient children while nurturing their own joy and strength. Both Dr. Sullivan and Julie Stamm highlight the power of perspective, the necessity of community, and the life-changing impact of honest conversation — for families facing MS, hope and connection are always possible.