Caring Conversations

Sarah Trott joins Brenda for the final episode of the season to help reflect on the lessons our incredible guests have shared with us. Brenda takes us on one final journey of what infancy to adulthood is like for those caring for children with disabilities and complex needs. Caregiving for children can be some of the lengthiest caregiving journeys out there and these caregivers protect, advocate, teach, embrace and celebrate like no other! Heartfelt thanks go out to all of our guests for being so open and sharing their stories with us this season. A special thank you to all of our listeners as well. We greatly appreciate all your likes, ratings and shares!

In the previous Caring Conversations episode, guest Mike George talked about what happens when it's not an option for an adult child with complex medical needs to move out of the home. On this episode, Brenda is joined by Anita Scott whose adult daughter with very complex needs is now living in her own home with full support. Find out how this arrangement has worked for Anita and her daughter, Madison. Anita also shares the shocking details of how Madison developed her disability. Listen and be inspired by how Anita finds room for gratitude in her life. She also offers a refreshing perspective on how things can actually go "right" for a change! You can reach Anita through Facebook and Instagram at @anitaterpstrascott.

Children grow up to eventually become independent, move out and lead their own lives. What happens when your adult child doesn't have the ability to do those things? How do their parents navigate their care for the rest of their lives? What happens if they are still caring for their adult child into their 50s and 60s, or even their 70s and 80s? What happens if one, or worse, both of the parents become ill and require care themselves? The options are limited. Some have no choice but to move their children to assisted living, if they can last through the lengthy wait lists. Others, like Mike George and his wife Jan, asked themselves those questions, navigated an illness among one of them and became proactive about creating a plan and a team to support their son at home for the rest of his life. Now, they share that plan with other caregivers in similar circumstances through their program "Soaring Families". Listen to learn more!

Mike's Email: [email protected]

Website: soaringfamilies.com; LI: https://www.linkedin.com/in/mikeg-bmg/

Book: Third Time Lucky: How Ben Shows Us the Way

Have you ever wondered what it would be like to be a 'bug on a wall' during a conversation between two caregivers who have adult children with medical complexities? Join Brenda and Donna Thomson as they share stories and discuss the world of caring for adult children transitioning out of the pediatric world. We also discuss how often caregivers' fears and worries can be misunderstood or misinterpreted by health professionals and one thing that they can do to help us during traumatic experiences. The insights that both Donna and Brenda share about caring for and advocating for their adult children can be applied to any caregiving situation.

Donna's Blog: "The Caregiver's Living Room"

LinkedIn: https://www.linkedin.com/in/donna4walls/

Facebook: https://www.facebook.com/donnathomsonauthor

Twitter: https://twitter.com/Thomsod (@thomsod)

Books: The Four Walls of My Freedom and The Unexpected Journey of Caregiving (with Dr. Zachary White)

Nicholas' Blog: "The Hockey Ambassador"

Nicole and Stasia join me to discuss caring for children with rare diseases and autism. We also go into details of how we define success with our children and just how much perseverance it takes for children, and their parents alike, to help them to reach their own potential and thrive. Nicole and Stasia also share with us the importance of self care amidst it all, how reaching out is so important and how that can be a form of self-care in and of itself.

Kate Houck is the Executive Director of David's Refuge, a central New York state based organization that provides respite resources and support to families of children with complex needs and life-threatening illnesses. Kate is passionate about caring for the caregivers and shares with us just how David's Refuge came to be, how they support parents through respite services, events, virtual support, and networking opportunities. She emphasizes the need for respite and how it has such a profound impact and positive ripple effect on the caregivers who receive it by giving them the feeling of empowerment and allowing them to feel less alone in their journeys. Despite the challenges with Covid, David's Refuge is continually coming up with innovative ways of expanding beyond the state of New York to meet the growing needs of parents throughout all of the United States.

Tiffany Yu is passionate about supporting parents of tube-fed children, and she does so by providing awareness of adaptive equipment and accessories along with helpful tips and tricks — all borne out of the love for her child, Magnus. Magnus was small but his legacy is mighty; he built an empire of his own in the short time he was alive. Sadly, and unexpectedly, Magnus passed away only 17 days after our interview. We discuss Tiffany's passion project of Tubie2Go, normalizing tube feeding, among many other aspects of caring for children with complex needs, especially with respect to those who are undiagnosed. She shares with us how hard life can be caring for children like Magnus but just how incredibly lifechanging and heart warming it can be to anyone who is open to letting children like him into their lives.

Magnus' star can be found at:

• 7h 53m 13.16s
• 13° 1' 55.35"

Please consider supporting other families of tube-fed children in through Tubie2Go.

Check out this heartwarming video of Magnus dancing with his sister, Kylee.

Donations to Magnus' Memorial Fund can be made here.

You do not have to be caring for a child with disabilities or complex needs — or be a caregiver for that matter — to learn something from this episode that you can apply to your own life. Pediatric critical care nurse Colleen Breen is one of those people who approaches everything in her life, including the very ill children she’s cared for over the past 41 years, with openness, curiosity, creativity, and hope. She is eager to learn something from every person she meets: no matter how big or how small; whether beginning life or transitioning from it; from the sick and the suffering and those filled with life. She is a strong advocate for the patients she has treated over the years and their families, and there's no doubt she’s left an indelible mark on every single one of their lives.

Colleen joins Brenda for a conversation about finding joy and meaning in such challenging work. She also shares what it takes to enjoy the most meaningful “career” instead of settling for the comfortable mediocrity of just "doing your job." While she may have recently left pediatric intensive care after 41 years, she’s nowhere near finished. She is spreading her wisdom through teaching and is now inspiring future nurses to open their minds and their hearts to use a whole lot of imagination, common sense, and endless compassion to treat all patients with dignity and love. Colleen continues to support others by creating memories and support as an end of life doula for children who are living with dying and their families.

This week Brenda is joined by Liz LaHaye of Edmonton, Alberta Canada. Liz went into early labour while she was home alone with her two young children. Her husband was a six hour drive away and she had no choice but to leave her kids at home and be taken by ambulance to the hospital. Her son, Francis, was born shortly thereafter, a “micro-premie”. At one pound, 15 ounces, he was so small that she dressed him in doll clothes! They spent the first 96 days of his life in the NICU. Listen in and learn what life was like for Liz and her family and how they are all adapting to living with Francis’ disability. Liz shares the importance of support and her perspective on what parents who have children in the hospital need from family, friends, and the very health professionals saving the lives of our children.

For Brenda's debut as Caring Conversations podcast host, she is joined by Nikki Geib. Nikki is the mom to two beautiful daughters, Georgi and Millie. Millie was born with a heart defect and Down syndrome. In this episode, Nikki reflects on how her fear of a diagnosis turned into instant love and acceptance the moment Millie was born. She shares how important it is to have community and appreciate every day that is given to us and expresses her joy in helping others who are in similar circumstances. Nikki inspires others by sharing her Down syndrome story, what she's learned along the way, Millie's smile and the sparkle in her eyes, and the love that Georgi and Millie have for each other on her Instagram page, @makingmilliestones—where they have gained quite an impressive following!

Learn Nikki's pregnancy story.