It was a sweltering afternoon in late August 2012 when I parked my SUV on a quiet street near a popular Greek eatery in Richmond Heights, MO. Driving that large vehicle through the narrow roads felt cumbersome, and my overall mood was just as heavy. After adjusting my hair in the visor mirror and noticing the puffiness around my eyes from weeks of tears, I decided it was time to put on my sunglasses, grab my bag, and head toward the restaurant.
I was about to meet a mother named Sarah, whose son, Ethan, had passed away six months prior due to infantile spasms, a condition that had only recently been diagnosed in my own daughter, Lily. It felt strange that we shared this connection through our husbands’ workplace. A year earlier, I had never encountered such a diagnosis, and now here I was, on my way to meet someone who had faced a similar heartbreak.
As I approached the restaurant, I noted the empty outdoor seating, likely abandoned due to the oppressive heat. I wondered what to say to Sarah when we met. I had never lost a child before and felt unprepared for this encounter. She had texted that she had already secured a table, and as I rounded the corner, I spotted her sitting alone, studying the menu. I hadn’t met her yet, but her presence felt familiar. There’s an unspoken bond among those of us who have experienced the profound loss of a child; even in mundane moments, you can sense the weight of shared sorrow.
“Sarah?” I asked, standing beside her booth.
“Genny, hi,” she replied warmly, standing to embrace me. In that moment, I felt a connection with someone who could truly understand my pain. She was the very first person I met under such heartbreaking circumstances.
“Thank you for meeting me,” she said.
“Honestly, I’m grateful to you for being here,” I responded, my voice soft as I expressed my condolences for Ethan. I hesitated before saying the word “died,” unsure if it would add to her grief.
“Thank you,” she replied. “It’s been incredibly hard. I’m so sorry to hear about Lily’s diagnosis as well; it’s a dreadful situation, and there’s so little the doctors can do. But you have time to find a solution.” Her optimism was comforting. “Many parents shy away from us—those of us who have lost children. They prefer to connect with those whose children are thriving.”
“Really?” I asked, surprised as I settled into my seat and took a sip of water. Why wouldn’t parents want to talk to her? Now, as a bereaved mom myself, I understand her perspective. Some parents understandably distance themselves from our experience; they seek hope and reassurance from those whose children are flourishing. I was yearning for connection and support. “I just need someone who gets what I’m going through and can share their insights. I’m so thankful you agreed to meet.”
As we ordered lunch, we spoke about Ethan and Lily, discussing treatments and options. By that point, Lily had already experienced a failed medication trial, but several alternatives remained. Sarah was remarkably knowledgeable, having conducted extensive research on available medications. I was in awe of her advocacy; she was the first parent I had encountered who actively sought to help her child.
“I feel overwhelmed,” I admitted, pulling out my notebook. “You seem so informed, and I worry I’m not asking the right questions or pursuing the best options for Lily. If the doctors are struggling, how will I ever find the answers?”
“I understand; it’s truly overwhelming,” she said, offering me empathy without pity. “If I could offer one piece of advice, it’s to remember this is a marathon, not a sprint.” She paused thoughtfully. “And if you can’t cure your child, make sure to care for yourself.” We both chuckled at her humor, but her message was clear. “Have you considered seeing a therapist? The trauma we endure as parents is significant, and professional support can be very helpful.”
“Yes,” I replied. “I’m seeing a therapist, thank goodness. And I’m on medication too,” I shared, relieved. “It’s made a huge difference.”
Years later, I still reflect on that lunch and the quote Sarah shared: “It’s a marathon, not a sprint.” I often think about how invaluable her support was, and I strive to offer the same to other mothers facing similar struggles. We all have our first “sorry-to-meet-you-this-way” person, and their impact is profound.
Recently, I reached out to fellow parents to gather advice they wished they had received early in their journeys. Here are some of their valuable insights:
- Reach out to fellow parents; their support is often unparalleled.
- Don’t hesitate to ask for help.
- Stay present; no one can predict what the future holds.
- Trust your instincts and don’t let anyone restrict your child’s potential.
- Celebrate every small milestone without comparing your child to others.
- More isn’t always better.
- Happiness can exist even amidst challenges.
- You are not alone in this journey.
- Joy will return; hold onto that hope.
- If you feel unheard, it’s okay to switch doctors.
- It’s perfectly fine to take breaks—enjoy a glass of wine or a weekend getaway!
- Remember, you are your child’s best advocate; nobody knows them better than you.
I was inspired by the resilience of the parents who shared their wisdom. Each piece of advice reflects the strength that arises from shared experiences.
I want to pass along another piece of advice Sarah gave me: “You’ll encounter families with children facing severe challenges and others who have made amazing strides. It’s tough, but try not to compare Lily to other kids with infantile spasms. Avoid getting overly hopeful or fearful from the stories you read or the families you meet.”
If you’re navigating the complexities of caring for a medically fragile child, I would be honored to connect with you, whether as your first “sorry-to-meet-you-this-way” person or as an additional support. It would mean a lot to honor Lily’s journey in this way.
For more insights, you can check out this related post on our blog.
Summary
In a heartfelt encounter between two grieving mothers, insights on coping with the loss of a child and the challenges of raising a child with medical complexities were shared. Through their conversation, they highlighted the importance of connection, empathy, and self-care while navigating their journeys.