About two years before welcoming my daughter, Lily, I transitioned from a career in public relations in Washington D.C. back to St. Louis, where my partner, Jake, and I grew up. Jake was attending law school in the evenings, and I decided to pursue a Master’s Degree in counseling, aiming to assist children and families navigating divorce. My own experiences with my parents’ separation at twelve had left a lasting impact, making me passionate about supporting others in similar situations.
During my first graduate course, Personal and Professional Development in Counseling, my instructor emphasized the importance of personal therapy: “Every good therapist sees a therapist,” she said. “You need to clear your own issues to effectively help those seeking your guidance.” This prompted me to engage with a licensed therapist, even though I wasn’t new to therapy; it had been a while since my last session. I initially thought I would only need a few months of support, but here I am ten years later—still a regular.
Reflecting on this time, it’s almost surreal how fortunate I was to have a therapist as I navigated my pregnancy with Lily, especially as we faced a series of challenging diagnoses. Each time we thought things couldn’t get worse, they did. As we adjusted to our new reality, more difficult news followed. The healing work I had done previously quickly shifted to managing the stressors that came with caring for Lily and the emotional toll it took on me. From then on, my therapy sessions centered around Lily and the grief I was experiencing.
Just days after Lily was born, I reached out to my therapist, asking for a call. We hadn’t scheduled a session yet, but I was overwhelmed. Lily had failed her newborn hearing screening, and I was filled with anxiety. I hesitated to share this with family and friends; their reactions felt daunting, and I didn’t know if they’d provide comfort or add to my distress.
In the quiet of our basement, with a bouncy seat nearby where Lily slept, I anxiously awaited my therapist’s call. As I stared at a blank wall, my thoughts spiraled. When my phone rang, I recognized her number and answered immediately.
“Hi, Genny. How are you?” she asked cheerfully yet cautiously, sensing my urgency.
“I’m okay,” I started, but then paused. We often say we’re fine when we’re not. “Actually, I’m not. I’m having a really hard time.” Tears streamed down as I confessed, “Lily might not be able to hear.”
In that moment, saying it aloud made it all too real. My therapist listened in silence, allowing me to feel my emotions. “I’m terrified,” I sobbed. “I can’t manage this.”
Once I calmed down, I explained how the hearing test had failed, and I’d have to wait a month for more information. “I don’t think I can handle the waiting. The uncertainty is driving me mad.” It felt as if we were at a pivotal crossroads in our lives, yet we had no choice of the path ahead.
Ultimately, I sought reassurance from my therapist that everything would be okay. I longed for her to tell me this was a common experience and soon I would laugh about it. While she couldn’t promise that, she offered something even more profound. In my journal, I noted these empowering statements from our conversation:
- I don’t like waiting; this is hard for me.
- I can cope with the unknown, but I’d prefer clarity.
- I’ll handle this, even though it’s tough.
Looking back nearly nine years later, those statements might seem basic, but they were revolutionary for me at the time. They became my mantras during those stressful weeks. Whenever anxiety crept in, I reminded myself, “I don’t need to think about this right now.”
My therapist also encouraged me to focus on problems I could solve. So, I sought out a lactation consultant to improve breastfeeding, and I weighed the pros and cons of waking Lily for nighttime feedings. Given the challenges ahead, I’m grateful we let her sleep.
I share this story because I feel incredibly lucky to have had therapeutic support during those early days with Lily. Battling fears and worries, compounded by postpartum hormones and sleepless nights, can be overwhelming. My therapist listened without trying to fix things or offering unsolicited advice. Her ability to simply hold space for my grief made a profound difference.
I discovered that Jake and I grieve differently, which doesn’t mean we care any less about each other. Sometimes I wanted to talk through Lily’s health concerns, while he preferred to compartmentalize. It highlighted the importance of finding additional support beyond each other. For the first time, when challenges arose, I faced them head-on instead of burying my feelings.
Approximately 75% of caregivers for rare diseases report a high care burden, often sacrificing their employment, social life, and health. This statistic resonated with me deeply. After Lily’s passing, Jake and I established the Lily Jessee Memorial Foundation to provide resources we wished we had during our journey. Recognizing the need for mental health support, we successfully advocated for a position at St. Louis Children’s Hospital to help parents navigating similar paths.
Initially, I thought financial assistance would be the most impactful aspect of our foundation. However, the mental health support provided by Katherine has been transformative. Through her work, she uncovered that one in three caregivers in the neurology unit experience significant anxiety and depression. Thanks to our foundation, Katherine has facilitated therapy sessions for numerous parents, profoundly impacting their lives.
Now, in my therapy sessions, I’m revisiting issues from ten years ago that I had set aside. Thanks to the coping skills I developed while caring for Lily, these challenges now feel more manageable. However, I also work on addressing my PTSD, as losing Lily has reshaped my perspective. I find myself anxious about my healthy children, aware of how quickly circumstances can change.
It’s a continuous journey, and I’m committed to doing my best each day to navigate these feelings.
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Summary
This heartfelt account illustrates the profound impact therapy had on the author during her challenging journey into motherhood. As she faced numerous health concerns regarding her newborn, her therapist provided essential support, helping her navigate the complexities of grief, anxiety, and the uncharted territory of caring for a medically complex child. The lessons learned during this time equipped her with the coping skills necessary for both her personal growth and the eventual establishment of a foundation aimed at supporting other families in similar situations.