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It was a typical, sweltering late-August day in 2012. I parked my black Chevy Tahoe on a narrow street near the Olympia Kebob House, a popular Greek restaurant in Richmond Heights, MO. Maneuvering that large vehicle through the tight streets was a hassle, but truthfully, everything felt irritating during this time. I lowered the visor mirror to check my reflection, adjusting my hair and gently touching my puffy under-eyes, a result of endless tears over the past month. Finally, I put the mirror back, donned my sunglasses, grabbed my bag from the passenger seat, and headed toward the restaurant.
I was on my way to meet a mom named Sarah, who had lost her son, Alex, about six months earlier due to a similar condition—infantile spasms. My daughter, Mia, had just been diagnosed with IS a month prior. It was uncanny that we had a mutual connection through my husband, Jake, who worked at the same law firm as Sarah’s spouse. Just a year ago, I had never even heard of infantile spasms, and now I was about to sit down with someone who had experienced the same heartache.
As I walked past the restaurant’s outdoor seating, which was almost deserted due to the heat, I wondered what to say to Sarah. I had never met anyone who had lost a child before. She texted me to say she had secured a table, and as I approached the hostess stand, I spotted a woman sitting alone in a booth, absorbed in the menu. Although I hadn’t met Sarah yet, I instinctively knew it was her. To those who haven’t shared this kind of loss, the silent pain we carry often goes unnoticed, but for those who have, it’s unmistakable.
“Sarah?” I asked, standing beside the table.
“Jenna, hi,” she replied warmly, standing to embrace me. Until that moment, I had not encountered another individual who could truly relate to my feelings. She was my very first “sorry-to-meet-you-this-way” person. After we sat down, she said, “Thank you for meeting me.”
“No, thank you for meeting me,” I replied. “I’m so sorry about Alex.” Then, hesitantly, I added, “that he… passed away.” I worried that mentioning his death might upset her, even though it was a reality she lived with every day.
“Thank you,” she said. “It’s been incredibly tough. I’m so sorry that Mia has infantile spasms as well. It’s a dreadful diagnosis, and the medical community knows so little about how to treat it. But you still have time to manage it.” I appreciated her optimism. “It’s just that many parents in your situation shy away from connecting with those who have lost a child. They prefer to engage with families whose children are thriving.”
“Really?” I asked, surprised as I placed my napkin on my lap and took a sip of water. Why wouldn’t they want to talk to her? Years later, as a grieving mom myself, I completely understand her perspective. Some parents understandably distance themselves from loss; they are searching for hope and looking for families who can offer a brighter future. At that moment, I was desperate for connection. “I just need someone who understands how I feel and can offer some guidance. I’m so grateful you’re here.”
As we ordered our lunches, we shared stories about our children, discussing treatments and the challenges we faced. Mia had already experienced one failed medication, but there were still options to explore. Sarah impressed me with her extensive research into treatments and her proactive approach; she was the first parent advocate I had encountered. As I pulled out my notebook, I began asking her questions, feeling overwhelmed. “You seem so knowledgeable, and I worry that I’m not as informed as you are. What if I don’t even know the right questions to ask? If doctors can’t help, how can I find the best treatment for Mia? I just don’t know what I’m missing!”
“I get it. It’s overwhelming,” Sarah responded. For the first time, I felt genuine empathy rather than pity from someone. “If I could offer you one piece of advice as you navigate this journey: remember, it’s a marathon, not a sprint.” She paused thoughtfully before adding, “And if you can’t cure the child, medicate the mother.” We both chuckled. “But seriously, are you seeing a therapist? What we endure as parents is traumatic, and it’s essential to seek support.”
“Oh yes,” I replied. “I’ve been seeing a therapist, thankfully… and I’m on medication too,” I added with a smile. “I feel like a different person since starting it.”
Recently, I stumbled upon the phrase Sarah shared with me nine years ago, “It’s a marathon, not a sprint,” on social media. It prompted me to reflect on our lunch and how crucial her support was during that time. I strive to be that kind of support for other mothers now. We all have our first “sorry-to-meet-you-this-way” person, and their impact is often profound. Earlier this month, I asked other parents what the best advice they received early in their journey was and I thought it would be helpful to share their responses here:
- Lean on other parents; they will be your best source of advice and support.
- Asking for help is a must.
- Live in the moment—no one knows what the future holds, so try not to stress about it.
- Trust your instincts. Don’t let others limit your child.
- Celebrate every small milestone without comparing your child to others.
The resilience of these parents shines through their advice. Despite the challenges we face, I hear support, validation, and encouragement in each shared experience. It reminds me why I feel such a strong connection to parents of children with complex needs.
Before I wrap up, I want to share another piece of advice Sarah offered me during our lunch: “You’ll encounter families with children who are struggling, as well as those who have made remarkable progress. It’s tough, but try not to compare Mia to other children with infantile spasms. Avoid getting too caught up in hope or fear based on the stories you hear online.”
If you’re a parent of a medically complex child at any stage of your journey, I would love 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 Mia’s journey in this way.
For more insights on pregnancy and home insemination, check out this helpful resource and explore this other blog post for further information.
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Summary:
In this poignant reflection, Jenna recounts her first encounter with another grieving mother, Sarah, who lost her son to infantile spasms. Their meeting became a pivotal moment of connection, empathy, and mutual support as they navigated the challenges of parenting children with complex medical needs. Jenna shares valuable insights from their conversation and advice from other parents, emphasizing the importance of community and understanding in the face of unimaginable loss.