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About two years before I welcomed my daughter, Lily, I transitioned from a public relations career in Washington D.C. back to my hometown of St. Louis with my partner, Jake. While he attended law school at night, I decided to pursue a Master’s Degree in counseling, aiming to support children and families navigating divorce. My own parents’ separation at the age of twelve had left a significant impact on me, and I hoped to help others through similar experiences.
During my first graduate course, Personal and Professional Development in Counseling, I was encouraged to seek therapy myself. “Every effective therapist has their own therapist,” my instructor advised. “You must address your own issues to fully assist those who seek your support.” This was a pivotal moment, prompting me to find a licensed therapist who could help me explore my past. Although I had some experience with therapy, it had been years since I had actively engaged in it. I thought my journey would be brief—perhaps six months to a year—but here I am, a decade later, still meeting with her regularly.
Looking back, it feels fortuitous that I had a therapist to lean on during my pregnancy with Lily, especially as we faced a series of daunting diagnoses. Just when we thought we’d adjusted to one challenge, another arose. My focus shifted from healing past wounds to coping with the uncertainties surrounding Lily’s health. From that moment forward, my therapy sessions became centered on Lily and the grief I was experiencing.
When Lily was only a few days old, I reached out to my therapist, feeling an urgent need to talk. We hadn’t planned a session for a while, but I was overwhelmed with anxiety after Lily failed her newborn hearing screening at the hospital. I didn’t want to share this concern with family or friends, as it felt too real and I feared their reactions.
In the quiet of my basement, I waited for my therapist’s call, seated in a recliner. My thoughts raced, and when she called, I quickly picked up. “Hello?” I answered.
“Hi, how are you, Genny?” she asked, her voice a mix of cheerfulness and caution, sensing my distress.
“I’m okay,” I started, but then paused. “Actually, I’m not okay. I’m really struggling.” Tears filled my eyes as I confessed, “Lily might not be able to hear.” The moment I spoke those words, the weight of my fears became tangible, and I broke down in sobs. My therapist listened in comforting silence, allowing me to express my fears fully. “I’m terrified,” I admitted. “I don’t think I can manage this.”
After I calmed down, I explained my anxiety about the waiting period before learning more about Lily’s hearing. “I can’t bear to wait a month. The uncertainty is driving me crazy.” Unlike the famous poem by Robert Frost, we didn’t have the luxury of choosing our path.
I wished for reassurance from my therapist that everything would turn out fine, that other families had faced similar challenges and emerged unscathed. While she couldn’t promise me that, she provided something far more valuable. During our call, I noted down some empowering statements that would guide me through the uncertainty:
- I don’t like waiting; this is hard for me.
- I can manage this, but it’s uncomfortable.
- I can handle the unknown, but I’d prefer clarity.
- I’ll deal with this, regardless of how tough it is.
- It’s possible Lily can hear, and if not, I have time to figure things out.
Reflecting on these affirmations nearly nine years later, they seem basic, yet they were transformative for me at the time. They marked the beginning of a new chapter in my mental health journey and became my mantras over the following weeks. Whenever worries crept in, I reminded myself, “I don’t have to think about this right now.”
My therapist encouraged me to concentrate on problems I could solve, which empowered me. I sought advice from a lactation consultant to improve breastfeeding and made decisions based on Lily’s health, like whether to wake her for feedings.
I share this experience because I feel incredibly fortunate to have had therapy during those early days with Lily. The combination of postpartum hormones and the weight of worry can be overwhelming. My therapist offered me a space to express my feelings without attempting to fix them or offer unsolicited advice. She allowed my tears to flow freely, which was deeply healing.
Through this journey, I learned that Jake and I grieve differently, which doesn’t mean we don’t care. I needed to talk about Lily’s health while he may have wanted to step back. It was essential for me to find additional support beyond him. For the first time, I faced my challenges head-on, feeling my emotions rather than burying them, with my therapist by my side making it less daunting.
Statistics indicate that around 75% of caregivers for rare diseases report a high care burden, often sacrificing their employment, social lives, and health. This realization struck me hard. When we created the Lily Jessee Memorial Foundation after her passing, we aimed to be the resource we wished we had. We also sought to ensure accessibility to vital services for parents on similar journeys. I can’t fathom how I would have coped without my therapist’s support.
Upon learning about an organization funding mental health services for parents, I advocated for a similar position at St. Louis Children’s Hospital for parents on the neurology floor. In 2019, we welcomed Katherine Aravamudan to the team, providing much-needed support to parents in both inpatient and outpatient settings.
Initially, I thought the financial assistance aspect of our foundation would have the most significant impact, but the emotional support from Katherine has truly transformed the community. Research shows that one in three caregivers in the Neurology unit experience clinical anxiety or depression, and thanks to our foundation, Katherine has provided therapy sessions to 258 parents and caregivers. One mother shared how life-changing Katherine’s support was for her.
Now, in my therapy sessions, I’m finally addressing some issues I first brought up ten years ago. They feel more manageable now, as I have developed healthy coping mechanisms while caring for Lily. I also work on coping with PTSD, as parenting a child like Lily and then losing her changes you. The rational understanding that something unlikely might happen doesn’t calm my fears, especially after our experiences. I find myself struggling with anxiety as a parent, even with my healthy children, and I’m actively working on this.
In summary, the journey of motherhood can be overwhelmingly tough, and having a therapist during those early days proved invaluable. The support, understanding, and tools I gained helped me navigate the uncertainties and challenges of raising a child with health complexities.
For more on similar topics, you can explore resources about home insemination, check out this guide for home insemination, or visit the NHS for excellent information on intrauterine insemination.