About two years prior to welcoming my daughter, Lily, I made a significant career shift. I left my job in public relations in Washington D.C. and returned to my hometown of St. Louis with my partner, Jake, who was attending law school at night. I decided to pursue a Master’s Degree in counseling, driven by a desire to support children and families navigating divorce. My own experience with my parents’ divorce at twelve had left a lasting impact, and I knew I wanted to help others cope with similar challenges.
In my first graduate course, Personal and Professional Development in Counseling, we were encouraged to engage in therapy ourselves with a more advanced practicum student. My instructor emphasized, “Every good therapist sees a therapist.” This guidance prompted me to seek help to address my own issues before assisting others. Although I had some prior experience with therapy, I hadn’t attended sessions for quite a while. I remember thinking I’d resolve my issues in six months to a year. Fast-forward ten years, and I still meet with my therapist regularly.
Reflecting on that period, I feel fortunate to have had my therapist’s support during my pregnancy with Lily, especially as we faced a series of alarming diagnoses. Each time we thought the situation couldn’t get worse, it somehow did. As we adjusted to our new reality, more unsettling news followed. My focus shifted from healing past wounds to managing the overwhelming stress that accompanied caring for Lily. From that moment on, the themes of my therapy sessions revolved around my daughter and the grief I was experiencing.
Just days after Lily’s birth, I reached out to my therapist, feeling an urgent need to talk. Although we hadn’t scheduled another session for a while, I was anxious after Lily failed the newborn hearing screening—a sign that something might be wrong. I hesitated to share this news with family and friends, fearing their reactions would only amplify my anxiety.
While Lily slept in another room, I found a quiet spot in the basement, sat in a recliner, and waited for my therapist’s call. The previous owners had installed a projector, and I found myself staring at its blank screen, lost in my thoughts. When my phone rang and I saw her number, I answered immediately.
“Hello?” I said, trying to sound composed.
“Hi, it’s Sarah. How are you?” she asked, her tone a blend of cheerfulness and caution, likely sensing my desperation.
“I’m okay,” I started, but then paused. We often say we’re okay even when we’re not. “Actually, I’m not. I’m scared. Lily might not be able to hear.” As I uttered those words, tears flowed freely. Expressing my fears made them feel all the more real, and I felt overwhelmed.
In that moment, Sarah listened quietly, creating a safe space for my emotions. I told her how difficult the waiting was—the uncertainty consuming me. I craved reassurance that everything would turn out fine, but instead, she offered something deeper. I took notes during our conversation, jotting down these coping statements:
- I don’t like waiting; this is hard for me.
- I can manage not knowing, but I would really like clarity.
- I will handle this, even though it’s challenging.
These phrases became mantras for me, helping me navigate the tumultuous weeks ahead. Whenever anxious thoughts crept in, I reminded myself, “I don’t have to think about this right now.”
Sarah encouraged me to focus on solvable problems, which felt empowering. I sought a lactation consultant to ease breastfeeding challenges and weighed the pros and cons of waking Lily for nighttime feedings, ultimately deciding to let her sleep since she was a healthy weight at birth.
I share this story to highlight the importance of having a therapist during those early, anxiety-ridden days with Lily. The combination of postpartum hormones and sleepless nights can be daunting, especially when alone with your worries. Sarah provided a listening ear like I had never experienced before. She shared her own past loss, helping me feel understood in my grief. In those moments, she allowed me to cry without trying to rush to fix things, which felt incredibly validating.
I learned that Jake and I process grief differently. While I might want to discuss Lily’s health incessantly, he might prefer to compartmentalize his feelings. This understanding helped me seek additional support from others. For the first time, I faced my challenges head-on rather than burying them, and Sarah was by my side every step of the way, which made the journey less intimidating.
A staggering 75% of caregivers for rare diseases report feeling a high burden from care responsibilities, often sacrificing their own well-being. This reality hit home when I read that statistic. After Lily’s passing, Jake and I founded the Lily Johnson Foundation to provide resources we wished we had during our journey. I reached out to a local organization that funds mental health services for parents, and we successfully launched a similar initiative for families in need.
Now, as I continue therapy, I’m revisiting issues I initially sought help for years ago, but they feel more manageable equipped with the coping skills I developed while caring for Lily. I also work on navigating the anxiety that comes with parenting, especially after experiencing trauma. It’s a journey, and I’m doing my best to navigate it daily.
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In summary, having the right support during challenging times is invaluable. My own experience with therapy has taught me the importance of facing fears, seeking help, and finding ways to cope. It’s a journey that continues to evolve, and I’m grateful for the lessons learned along the way.