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About two years before I welcomed my daughter, Lily, I transitioned from a career in public relations in Washington D.C. back to my hometown of St. Louis with my partner, Jake. While he was attending law school at night, I decided to pursue a Master’s Degree in counseling, motivated by my desire to assist children and families dealing with divorce. Having experienced my own parents’ divorce at the age of twelve, I was deeply aware of the emotional turmoil that could follow.
During my first graduate course, Personal and Professional Development in Counseling, we were encouraged to participate in therapy with a more advanced practicum student. “Every effective therapist has their own therapist,” my instructor explained. “You must address your issues to be fully present for those seeking your help.”
Through those initial sessions, I recognized that I had unresolved matters that needed attention before I could support others. So, I sought out my own fully licensed therapist. While I had some previous experience with therapy, it had been a while since my last visit. Arriving at my first appointment, I naively thought, “I’ll be here for six months—maybe a year at most—then I’ll be on my way.” Fast forward ten years, and I still see her regularly.
In hindsight, it was almost fate that I had a therapist ready to support me during my pregnancy with Lily as we faced one complicated diagnosis after another. Just when we thought things couldn’t get worse, they did. And as we adapted to our new normal, we were hit with more difficult news. The healing work I had done shifted to coping with the uncertainties surrounding Lily and the stress of caregiving. From that point on, our therapy sessions revolved around Lily and my grief.
Just days after Lily was born, I reached out to my therapist, leaving a message asking her to call. Although we hadn’t planned another session for a while, I desperately needed to talk. Lily had failed her newborn hearing test at the hospital—the first indication that something might be wrong—and my anxiety was overwhelming. I hesitated to tell family and friends because I wasn’t sure how their reactions would affect me; I wasn’t ready for that added pressure.
As Lily slept in a baby seat upstairs, I slipped away to the basement, settling into a worn recliner with my phone beside me, staring at a blank wall and lost in my thoughts. When my therapist called, I answered immediately.
“Hello?”
“Hi, Emily. How are you?” she asked, her tone cheerful but cautious—she must have sensed my urgency.
“I’m okay,” I began, then paused. We often say we’re okay when we’re not. “Actually, I’m not okay. I’m really struggling.” Tears filled my eyes. “Lily might not be able to hear.” I broke down sobbing. Voicing my fears made them feel all too real, and it was overwhelming. My therapist listened patiently, allowing the silence to invite more tears and emotions. “I’m so scared,” I managed to say through my cries. “I can’t handle this.”
Once I calmed down, I shared that we wouldn’t have more information for a month. “I can’t wait that long… I really can’t. The uncertainty is driving me crazy.”
I wanted my therapist to assure me that everything would turn out fine, that this was common, and that we’d look back on it all with laughter. However, she couldn’t promise that. Instead, she offered me something far more valuable. I jotted down some coping statements during our conversation:
- I don’t like waiting; this is hard for me.
- I can manage this, even if I don’t enjoy it.
- I’d prefer clarity, but I’ll cope with uncertainty.
- If Lily can’t hear, I’ll have time to figure it out.
- I can think about this, but I don’t have to right now.
Reflecting on these statements nearly nine years later, they seem simple but were transformative at the time. They became my mantras, helping me cope with worries by reminding myself, “I don’t have to think about this right now.”
My therapist also emphasized focusing on problems I could resolve. Channeling my energy into those issues felt empowering. I sought out a lactation consultant to ease breastfeeding and contemplated whether to wake Lily for nighttime feedings, ultimately deciding against it since she was born at a healthy weight.
I share this experience because I am grateful for the support of my therapist during those challenging early days with Lily. Sleepless nights and overwhelming anxiety can make you feel trapped when you’re alone with a newborn. My therapist listened in a way I hadn’t experienced before. She shared her own loss, allowing me to feel understood in my grief. She let me cry without trying to fix anything, which was incredibly powerful.
Through this process, I learned that Jake and I grieve differently, which doesn’t mean we don’t care for each other. I needed to seek additional support outside of our relationship; I couldn’t mask my feelings anymore. For the first time, when faced with hardship, I didn’t shy away or deny it—I confronted it head-on, thanks to the guidance of my therapist.
Statistics show that about 75% of caregivers for rare diseases experience a high level of care burden, often sacrificing their own well-being. When I first encountered this statistic, my immediate reaction was, “Of course.” I wondered about the remaining 25% and what their secret was.
In creating the Lily Jessee Foundation after Lily passed, Jake and I aimed to provide the resources we wished we had. Knowing how vital mental health support was for parents, I worked with another organization to establish a position specifically for parents of children on the neurology floor at St. Louis Children’s Hospital. In 2019, a dedicated therapist joined the team, offering invaluable support to families during their most difficult times.
While I initially thought the financial assistance aspect of the foundation would be the most impactful, the community support from our therapist has proven to be equally vital. Research shows that one in three caregivers in the Neurology unit experience anxiety or depression at a clinical level. Thanks to our foundation, over 258 parents have received mental health therapy sessions, helping them navigate their challenges. One mother described the support as life-changing, a testament to the positive impact we aspire to honor in Lily’s memory.
Now, in my therapy sessions, I am finally addressing some of the issues I initially sought help for ten years ago. Having developed healthier coping mechanisms while caring for Lily, I find that those past concerns feel more manageable now. I’m also working through PTSD, as the experience of parenting Lily and ultimately losing her has changed me. I recognize that it’s natural to feel anxious as a parent, especially after facing such uncertainty. It’s an ongoing journey, and I strive to navigate each day as best as I can.
For more insights on home insemination and pregnancy, check out this excellent resource on IVF and fertility preservation. And if you’re looking for helpful products, visit Make a Mom for useful tools and information. You can also find relatable stories on our Home Insemination Kit blog.
Summary:
In the journey of motherhood, finding support during challenging times is crucial. The author shares her experience navigating the complexities of parenting a medically complex child while utilizing therapy as a vital resource. With the help of her therapist, she learned to confront her fears, develop coping mechanisms, and ultimately honor her child’s legacy by creating a support foundation for other families facing similar challenges.
Keyphrase: emotional support in motherhood
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