April 2022

Photo by Leisa Thompson Photography

By Ami Walsh

As a young mom, Mary Ann Fithian discovered the power of words to help her survive the overwhelming experience of caring for a child with a rare disease that cannot be cured. Writing eases her isolation and sense of helplessness. The latter, she says, is what hurts her the most. Words, like oxygen, help her to breathe.

Today her voice is helping shape life-giving spaces for other caregivers. In her new role as Director of Community Engagement of North Star Reach — a medical specialty camp providing free overnight camps to chronically ill children and support programs for their families — she has organized a growing number of care conferences, speaker series, and parent support groups. 

Our conversation explores how she navigates the losses that make up her everyday life as a “medical mom” while also cultivating deep connections with hundreds of other parents, many of whom are just at the beginning of their child’s medical journey. Her answer, in one word? Faith.

Ami: When did you start writing about your experiences as a caregiver, and did you always share with others?

Mary Ann: Fairly early in Faith’s illness, I realized that I wasn’t able to communicate verbally with people about how she was doing or how bad things were. Whenever anybody reached out to me, I would send the calls to voicemail. The only way I could express myself was through writing.

I’m not a crier, and I never wanted to cry. I really needed to think about what I was saying so I was sure I was conveying the right message, especially because I thought the older she got, the more chance there would be that she would read the messages I was putting out there. She liked when I read my writing to her. She would ask to “hear her story” when she was little. Though it seems very vulnerable, the least vulnerable way for me to share was through writing because it was too hard for me to verbalize it to anyone.

A: Your writing is incredibly honest and moving. Your blog (mylittlefaith.org) attracts a big following, as do your Facebook posts. Can you talk about how your personal writing informed the community-building work you’re doing now?

MA: I realized somewhere along the way that there were so many more Faiths out there, and so many more Mary Anns. People need to feel that they are not alone. I had parents contacting me whose children had a very different diagnosis from Faith’s — nothing to do with gut issues — and they would say, “Your blog was so helpful. It gave me so much support.” I remember thinking, How can a one-way blog be supportive? They’re just reading my thoughts. 

I realized that we’re all sitting in the same place. We’re terrified all the time about our sick kids. We have this connection that is the community of children with chronic illnesses. We’re such a unique group and we speak an entirely different language from other parents. When they read my blog and connect with me that’s what they realize too. We’re all speaking the same language. 

A: Can you trace when you began to realize it was important to share your story with a larger community?

MA: We’re very connected with the Woodson Clinical Research Fund. I remember asking why he does this work. Why does he try to help all these kids? He said something along the lines of he knows that he can do more by using his influence and work within the community rather than working alone. When he said that to me, I thought, “Oh my gosh, that’s what I can do. I can use my influence to help parents like me make it through.” I remember thinking that once I’m strong enough, that is what I would do.

And it really wasn’t me being strong enough, it was Faith getting to a point where she was old enough to do more care on her own. That’s when I realized it was my turn to try to start helping families like ours to get the support they need to be able to breathe. That’s what it feels like — you almost feel like you can’t exhale when you’re in the thick of it. Everything lined up and I knew it was my time to start our next steps.

A: And this change for you came at the start of the pandemic?

MA: Yes, right before COVID-19 hit, Faith got to a point where she could do more of her own care. I decided I could go back to work. Rather than return to human resources, which is what I did earlier in my career, I knew I needed to do something to impact the lives of families with sick kids because they need more resources. Eventually, I ended up at North Star Reach. A month and a half later the pandemic hit. Ironically, these families would end up needing the support of these programs more in the pandemic than they ever have.

It’s this kind of stuff, when everything lines up in a specific way, that makes you feel like the purpose is greater.

A: Can you talk a little more about your influence? What it is and how you’d like to use it?

MA: Faith is going to be sixteen this month. I’m part of a group of medical moms at Mott who have been around a long time. Our kids have been sick their whole lives. We’ve learned how to cope and we’re very quick to support other parents and moms; we call them our sisters.

I remember being so lost in the beginning years. I would go somewhere just to get away from the hospital for an hour. I would walk into the mall or Target. I remember one time standing in the middle of Von Maur by the piano. I had been standing there for a half hour and someone walked up to me and asked if I was okay. I hadn’t even realized I was standing there. I didn’t even know where I was.

You’re so lost in the beginning of the diagnosis. I had to write the names of my friends down on a sticky note and put it on my phone because I couldn’t remember my very closest friends’ names. You’re so consumed by the new diagnosis and dealing with all the medical stuff that you don’t even know how to take care of your basic needs, because you’re so focused on your child’s needs.

I made it through that. And now I want to coach other families on where to find support and resources when you feel like you don’t know where you are. I also want to change the fact that there’s not a ton of resources for families like ours. I want to make sure that in the future, there’s government support for people who can’t work and don’t have insurance because they’re taking care of their kid. There are so many things that need to be taken care of! I want to make changes for all the families like ours that might need help.

A: Can you talk about how you decided to name your daughter Faith?

MA: I was in the sixth grade when I decided I was going to have a daughter and name her Faith. Isn’t that crazy? I was at a youth rally, some conference for teen leaders, and I met this girl. I asked her “What’s your name?” and she said “Faith.” I loved that name.

When I had her and named her Faith, we didn’t know she was going to be sick. We had no idea. It’s crazy now because her name fits everything about her. She gives people faith. She was the one that made me realize I could do all this. When I saw her first attend North Star Reach, I realized how brave she had become. After camp, with her newly-gained confidence and independence, she decided she was going to be a ballerina. She stopped letting her illness dictate everything about her. 

That’s when I realized I needed to do the same thing. I couldn’t let her illness dictate everything about me. I had to start making something more positive out of the situation. It was Faith. She lives up to her name.

BIO: 

Ami Walsh is honored to be a colleague of Mary Ann Fithian at North Star Reach, where she leads the digital strategy for virtual programs and manages communications. Among her many duties, Ami also directs an audio storytelling program for campers.


www.northstarreach.org
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