Podcast Title: A Place of Yes | A Grief Podcast
Episode: The Untold Truth About Life as a Special Needs Mom
Release Date: December 12, 2024
Host: Bright Sighted
Guest: Hilary Savoy

Introduction

In this poignant episode of A Place of Yes, host Bright Sighted engages in a heartfelt conversation with Hilary Savoy, the devoted mother of Esme, a 13-year-old with special needs. The discussion delves deep into the complexities of parenting a child with significant medical challenges, exploring themes of communication, identity, grief, and resilience.

Update on Esme’s Life

Hilary Savoy begins by sharing an update on Esme’s current life and development:

“Ez is 13. She is such a 13 year old. She is annoyed by me. She periodically wants to be really, really close and then not at all. She gets really emotional about things. We talk about cute boys a lot.” [00:28]

Hilary describes Esme as a vibrant and spirited teenager who is navigating the typical challenges of adolescence in her unique way. Despite her medical fragility and physical limitations, Esme exhibits increasing independence and self-expression, particularly through her interactions with others.

Esme’s Communication Through Eye Gaze Technology

A significant portion of the conversation focuses on Esme’s use of an eye gaze device, a crucial tool that allows her to communicate despite being nonverbal and non-ambulatory.

Host:

“Can you talk a little bit about that eye gaze device?” [04:31]

Hilary Savoy:

“The eye gaze device is basically like an iPad-sized tablet with a second device that tracks her eye movements and translates them into commands on the screen. It’s like a mouse controlled by her eyes.” [04:48]

Hilary praises the device’s impact on Esme’s ability to communicate, noting its widespread use in various settings—home, school, and with family members. However, she also highlights the challenges, such as the device’s dependency on precise positioning and the physical effort required from Esme to use it effectively.

“It is really, really cool. And it's a wonderful device. I can't say enough good about these devices and how every single child who has difficulty expressing themselves should have the opportunity to try.” [05:07]

Emotional and Psychological Impact on Hilary

Hilary opens up about the emotional toll of being Esme’s primary caregiver and the complexities of maintaining her identity beyond motherhood.

“When Esme isn't understood or isn't treated as though she understands, my hackles grow up like I am ready to fight because I know if she has communicated something, it needs to be respected.” [13:26]

She reflects on the difficulty of processing her grief and the constant fear of losing her child, especially highlighted by Esme’s recent experience with a severe seizure.

Navigating Grief and Personal Identity

The conversation shifts to Hilary’s journey in rediscovering herself outside the role of being Esme’s mother. She discusses the struggle of maintaining her sense of self while being deeply intertwined with her child’s needs.

Host:
“How do you then be Hillary? You know what I mean? How are you not just like, and I'm guilty of this, like, oh, it's Esme's mom?” [15:00]

Hilary Savoy:

“It's something that I'm grappling with a lot because it is part of that separation that happens. As a parent, you have to ask yourself, like, what am I? Who am I? What do I do?” [15:28]

She shares personal anecdotes about feeling lost after her divorce and the challenges of delegating caregiving responsibilities, which led to moments of intense self-doubt and identity crisis.

Dealing with Medical Emergencies and Fear

Hilary recounts Esme’s first generalized tonic-clonic seizure, a terrifying experience that underscores the constant vigilance required in managing her daughter’s health.

“EZ had her worst seizure that she's ever had in August. It was her first generalized tonic clonic seizure... I was looking at... I was looking at her during the seizure, but she didn't make a sound. That's the reality of the stuff that we're scared of as parents.” [19:03]

The discussion touches on the fear of Sudden Unexpected Death in Epilepsy (SUDEP) and the emotional strain it places on caregivers, emphasizing the perpetual anxiety that accompanies parenting a medically fragile child.

Balancing Grief with Moving Forward

Both host and guest explore the delicate balance between honoring one’s grief and finding ways to move forward. Hilary speaks candidly about her coping mechanisms and the importance of allowing oneself to feel and process deep-seated emotions.

“When I imagine my life without Esme, the only thing that comes into my mind every single time is I imagine myself walking out into the ocean and never coming back.” [25:57]

She underscores the necessity of having supportive relationships where she can express her darkest feelings without judgment, highlighting the universal nature of intense grief in similar families.

Reconnecting with Self and Building Relationships

The episode also touches on the theme of self-reconnection and building relationships outside the immediate caregiving role. Hilary shares insights into how she has begun to engage in dating and forming new connections as a step towards rediscovering herself.

“Maybe you're falling in love with you. ... Detachment from yourself that you build up in the process of taking care of a child... reconnecting with yourself.” [32:33]

This segment emphasizes the transformative journey many parents of special needs children undertake to reclaim their identities and find personal fulfillment beyond their parental responsibilities.

Conclusion

The episode concludes with a powerful reminder of the profound love and resilience that defines Hilary and Esme’s relationship. Hilary reflects on the enduring impact of caring for a child with special needs and the continuous journey of navigating grief, identity, and hope.

“A lot of art, a lot of acts of service come out of pain... It might take 10 years of working on a foundation to be ready to feel okay.” [27:20]

Through her candid revelations, Hilary offers listeners a deeply personal glimpse into the untold truths of life as a special needs mom, advocating for understanding, empathy, and the relentless pursuit of self-discovery amidst adversity.

Notable Quotes with Timestamps

• Hilary Savoy:
  “Esme is basically the coolest person that has ever existed... She is non ambulatory... she's tube fed.” [03:21]

• Hilary Savoy:
  “I wish I could climb into her body and her brain every once in a while and know at the same time.” [08:00]

• Hilary Savoy:
  “You are not the only person. And that grief can be bigger than anything you can imagine because it's the same size as your love.” [30:26]

Final Thoughts

This episode of A Place of Yes masterfully captures the intricate realities of parenting a child with special needs. Hilary Savoy’s narrative is a testament to the strength of the human spirit and the enduring power of love and hope. Listeners are left with a deeper understanding of the silent battles and profound joys that accompany life as a special needs parent.