Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support - 202: Infantile Spasms, Healing from Trauma and Emotional Resilience

202: Infantile Spasms, Healing from Trauma and Emotional Resilience

01/17/24 • 47 min

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

In this episode about parenting a child with infantile spasms, Katie Taylor, a certified child life specialist, has a profound conversation with Hailey, a resilient mother navigating the complexities of raising a child with a disability. Join us as we delve into Hailey's journey, exploring the challenges and triumphs of parenting under extraordinary circumstances.

"It's not always about thriving in the traditional sense; sometimes it's about finding small victories in our daily struggles and embracing them." - Hailey Adkisson

About the Episode:

This episode offers an intimate glimpse into the life of Hailey, a mother from the Pacific Northwest, and her blended family. Hailey shares her experiences managing her professional life while being a dedicated caregiver to her youngest child, diagnosed with infantile spasms. The discussion also touches on the significance of mindfulness and the power of being present, especially during challenging times.

From the episode with Hailey and Katie, here are three key takeaways:

The Importance of Advocacy and Community: Hailey emphasizes how advocacy and connecting with a community have been vital for her. She discusses the therapeutic aspect of advocating for her child and how it has helped her connect with other families in similar situations.
Challenges and Adaptations in Parenting: The conversation highlights the difficulties of parenting a child with medical complexities. Hailey shares her experiences of managing work-life balance and the adjustments she and her family have had to make to accommodate their child's needs.
Mindfulness and Presence in Caregiving: Both Hailey and Katie touch upon the theme of mindfulness in caregiving. They discuss the challenges of staying present and mindful while dealing with recurring medical crises and the importance of finding ways to disconnect momentarily without losing focus on the child's needs.

"I've learned so much from my daughter. Even though the journey is tough, it has opened my eyes to a different kind of love and strength." - Hailey Adkisson

In our enlightening talk with Hailey, we discover the often-overlooked realities of caregiving and the resilience it fosters. Her parenting journey is a testament to the strength found in adversity and the importance of mindfulness in the face of life's challenges. We hope this episode inspires and provides valuable insights to caregivers and families facing similar journeys.

You can buy Hailey's book, What is Epilepsy?, on Amazon.

About Katie Taylor, CCLS and Child Life On Call:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

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"It's not always about thriving in the traditional sense; sometimes it's about finding small victories in our daily struggles and embracing them." - Hailey Adkisson

About the Episode:

From the episode with Hailey and Katie, here are three key takeaways:

The Importance of Advocacy and Community: Hailey emphasizes how advocacy and connecting with a community have been vital for her. She discusses the therapeutic aspect of advocating for her child and how it has helped her connect with other families in similar situations.
Challenges and Adaptations in Parenting: The conversation highlights the difficulties of parenting a child with medical complexities. Hailey shares her experiences of managing work-life balance and the adjustments she and her family have had to make to accommodate their child's needs.
Mindfulness and Presence in Caregiving: Both Hailey and Katie touch upon the theme of mindfulness in caregiving. They discuss the challenges of staying present and mindful while dealing with recurring medical crises and the importance of finding ways to disconnect momentarily without losing focus on the child's needs.

"I've learned so much from my daughter. Even though the journey is tough, it has opened my eyes to a different kind of love and strength." - Hailey Adkisson

You can buy Hailey's book, What is Epilepsy?, on Amazon.

About Katie Taylor, CCLS and Child Life On Call:

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

Instagram | LinkedIn | Amazon

Previous Episode

201: Personal Growth Theory, NEC in the NICU and Shielding Siblings - Kathryn’s Story

I'm his mom, and I carried him for almost nine months, and no one loved him more than me. I'm his expert, and I'm going to own that. - Kathryn Whitaker

Have you ever found yourself amazed at the strength people find in the toughest of times?

Well, on today’s podcast, we’re talking about one of the common themes we’ve seen over the past 200 episodes of Child Life On Call and something I consistently see parents share on social media.

We’re talking about the incredible phenomenon of PTG, or post-traumatic growth. We're taking a special look at one of the deeply personal journeys a parent has embarked on during and after their child's medical battles. Together, we'll explore how these intense experiences can unexpectedly sow seeds of strength, knit tighter family connections, and awaken a profound appreciation for every precious moment of life. And guess what? We have a special guest, parent, and passionate advocate, Kathryn Whitaker, who's here to share her inspiring story. So grab your favorite cup of comfort, settle in, and join us as we uncover the resilience and beautiful transformation hidden within the heart of every parent's medical challenge.

Kathryn Whitaker, a proud 6th generation Texan and a mother of six, brings a wealth of personal experience and resilience to the Child Life On Call podcast. With a background in agriculture and marketing, Kathryn's journey as a seasoned NICU parent has inspired her to advocate for families facing similar challenges. Her work with Hand to Hold, a national nonprofit supporting NICU families, showcases her passion for providing strength and support to others dealing with the NICU experience. Through her difficult experiences, Kathryn has found personal growth and hope, offering valuable insights to parents navigating similar paths. Her unique perspective and unwavering resilience make her a compelling voice for anyone seeking strength and inspiration during challenging times.

You are not going to be the same person, thankfully, but hopefully a stronger, better version of the person who walked in the door, as opposed to the person who walks out. - Kathryn Whitaker

The resources mentioned in this episode are:

HandtoHold.org
Check out the NICU Heroes podcast for NICU professionals looking to earn continuing education credits while learning from amazing guests.
Purchase Kathryn Whitaker's book Live Big. Love Bigger. on Amazon or wherever books are sold for an inspiring and transformational read about living an intentional life.
Kathryn on Instagram.

About Katie Taylor, CCLS and Child Life On Call:

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

Instagram | LinkedIn | Amazon

Next Episode

203: 12 Years to Diagnosis, Understanding Four Key Emotional Reactions, and Channeling Her Story into Positive Action - Jessica's Story

“If you have a question, ask it. You are the parent, you need to know” - Jessica Siddi-Sewart

How can medical parents use their experiences to promote action and advocacy?

As a child life specialist, I know that there is not one "normal" or "best" reaction for a parent when their child receives a medical diagnosis.

Today's guest, Jessica Siddi-Sewart and she helps us reflect on the different stages parents go through when facing a medical diagnosis for their child. She is also a mother of three, a paralegal, and a business owner.

I had the pleasure of meeting Jessica during our time at the American Academy of Pediatrics Conference this past October and was instantly drawn to her products and knew I wanted her to join me on the Child Life On Call podcast. Her company Puffaluffs Inc. was inspired by a personal experience with one of her sons. After giving birth at 28 weeks, a NICU stay, and a long and emotional journey to receiving a diagnosis, Jessica still found a way to make meaning and give back.

For Jessica's son, it took 12 years and hundreds of doctor appointments to receive a concrete diagnosis: DiGeorge Syndrome. She shares her journey and learned the importance of finding support and resources from families walking through similar challenges.

“It teaches you to pivot. It teaches you, you know, to learn different things and be okay. It is what it is and you will be okay”

The resources mentioned in this episode are: