Finding Courage in Meeting With Another Parent of a Child With Infantile Spasms

It was a typical, steamy hot late-August day in 2012. I parked my black Chevy Tahoe on a side street not far from Olympia Kebob House, a well-known Greek restaurant in Richmond Heights, MO. I hated driving that big car on the narrow streets, but everything about life irritated me right now. I pulled the visor mirror down, moved my hair around and touched my under eyes with my ring and middle fingers. They were puffy from all the crying I’d been doing for a month straight. There was no use. I put the mirror back up, put on my sunglasses, grabbed my bag in the passenger seat and walked down the street toward the restaurant.

I was on my way to meet a mom, Elizabeth, whose son, Dan, passed away about six months earlier. He also had infantile spasms. My daughter June had been diagnosed with infantile spasms about a month earlier. Elizabeth’s husband worked at the same law firm as my husband, Matt. What are the odds that we would know someone who also had a child with infantile spasms? A year ago, I had never heard of such a thing, and now I was meeting someone Matt knew who had a child diagnosed with them too. It felt bizarre.

I walked by the outside seating, nearly empty because of the sweltering heat. As I walked toward the door, I thought about what to say to Elizabeth. I had never known anyone who had lost a child. She texted me that she already had a table so I passed by the hostess stand, and around the corner there I saw a woman sitting by herself in a booth looking at the menu. I hadn’t met Elizabeth yet, but I knew it was her. The rest of the world may not notice, but once you’ve experienced what we’ve been through, it’s hard to miss the subtle agony that’s in our entire being, especially when you are looking for it. It’s like a part of us is somewhere else even in the midst of viewing a lunch menu.

“Elizabeth?” I said, standing beside the table.

“Genny, hi,” she said in a nurturing way. She stood up, and we hugged. Before this moment, right here, I hadn’t yet met another person who could possibly understand what I was feeling. She was my very first sorry-to-meet-you-this-way person. We broke away and sat down across from each other in the booth. “Thanks for meeting me,” she said.

“Are you kidding me? Thank you for meeting me,” I chimed in. “I am so sorry about Daniel,” I said. Then very softly adding, “that he…died.”

I wasn’t sure if saying the word died would offend her or make her sad. It’s not like she didn’t know that he was dead every second of every day. I just didn’t know how to say it or how to phrase it.

“Thank you,” she said. “It’s been really tough. I am so sorry that June has infantile spasms too. It’s a horrible diagnosis, and doctors know very little about how to stop them. But you still have time to get them under control.”

I appreciated her hopefulness.

“It’s just not many parents in your situation who want to talk to the parents of the child who has died. They want to talk to the parents whose child is doing well.”

“Really?” I said, shocked as I put my napkin in my lap and then took a sip of water.

Why wouldn’t they want to talk to her? Now, years later as a bereaved mom too, I totally understand what she meant. Some parents, understandably, avoid us and our stories. They just can’t go there. Newly diagnosed parents usually look for hope and seek out a family that can give them the future they are looking for. I don’t think I truly understood what June’s future looked like because it hadn’t crossed my mind that Dan’s fate could be June’s fate. And honestly, I was desperate for connection.

“I am just looking for someone who understands how I’m feeling and can offer me some advice. I am so thankful you were willing to meet me.”

The waitress came, and we ordered our lunches. We talked about Dan, and I told her about June. We talked about treatments. By that time, June had already failed one medication, but there were still other options. Elizabeth was so bright and so on it. She had done so much research on frontline medications, and I was so impressed with her. She was the first parent advocate I had ever met, and I was in awe. As I pulled out my notebook and started writing notes, I began firing questions at her.

I paused and said, “I just feel so overwhelmed. You seem so smart, and I don’t think I am as smart as you. What if I don’t even know to think of the right questions to ask or seek out? If doctors can’t even help me, how can I find the right treatment or doctor or procedure for June? I don’t know what I don’t know!”

“I know. It is so overwhelming,” Elizabeth said.

It was the first time I didn’t sense pity from someone – besides my therapist– who listened to me as I shared my fears. It was pure empathy and understanding.

“If I can give you one piece of advice as you start down this road: just remember it’s a marathon, not a sprint.” She paused like she was thinking for a moment. “And if you can’t cure the child, medicate the mother.”

We both laughed.

“But in all seriousness, are you seeing someone? What we go through as parents is traumatizing, and if you can see a therapist, it’s beneficial and important.”

“Oh, yes,” I said. “I am seeing a therapist, thank goodness… “And I am taking medication too,” I said, smiling. “I feel like a different person since starting it.”

***

I recently came across the quote Elizabeth gifted me with nine years ago, “It’s a marathon, not a sprint,” on Instagram. It got me thinking about Elizabeth and the encounter I described above. What would I have done without her? Elizabeth was a huge support, and I try to be to other mothers what she was to me. We all have a first sorry-to-meet-you-this-way person, and she usually has a profound impact on us.

Earlier this month, I asked some fellow parents what was the best piece of advice they received early on in their journey, and I thought it would be helpful to share their responses here because they are all so important.

1. Lean on other parents; they will be your best source of advice and support.

2. Asking for help is a must.

3. Live in the now. Nobody knows what two, five, 10 years will bring, so try not to live there.

4. Listen to your gut. Don’t let anyone limit your child.

5. Appreciate all of the inchstones and don’t compare your child to other typically developing kids.

6. More is not always better.

7. Don’t always assume things will improve. Find joy and happiness wherever you are.

8. You don’t have to go through this alone.

9. One day you will feel joy again. Believe in that.

10. If at any point you don’t feel heard, don’t feel guilty switching doctors. I had to.

11. You can go out for a glass of wine, even go for a weekend away!

12. Only we, as parents, can be the best advocates. We know our children best!

I loved all the responses people sent to me when I asked parents to send me advice they received and some they would give to new parents in our situation. Talk about a resilient group of people. In some ways, we have more reasons than most to give up, but I hear support, validation and encouragement in each one of these comments. It reminds me why I love parents of children with complex needs so much.

I want to leave you with another piece of advice Elizabeth gave me that day we met for lunch in 2012.

She said, “You will see families with children who are struggling greatly, as well as children who have made tremendous progress. I know it’s hard, but don’t compare June to other children with infantile spasms… Try not to get too hopeful or too fearful from the stories you read online and the families you meet.”

If you’re a parent of a medically complex child at any point on your journey, I would be honored to connect with you, whether as your first sorry-to-meet-you-this-way person or as an additional support. I’d be grateful for the chance to honor June’s journey by doing so.

This post was written in loving memory of Dan O’Connell and in gratitude to all first sorry-to meet-you-this-way relationships.