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S1E2. A sick child

Reinvented | Season 1 | Allison Pullins | A sick child

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Overview

In June 2018, Allison Pullins found out that her 3-year-old son, James, has Marfan syndrome, a genetic condition that affects his connective tissue and has serious implications for his heart, eyes, and skeletal system.

In this conversation, I speak with Allison about about what it’s like finding out that your child has a rare genetic disorder, the challenges of living with a chronic disease, and how Allison has found meaning from this experience.

Highlights

18:15 – “His aorta was almost 3 centimeters big. He was three years old. My aorta, as an adult female, 5′ 3″, was probably about 3 and a half. So it was big. And I knew enough to know the implications of this.”

19:00 – “I was devastated. I was just devastated. It was like my brain almost shut off… I kept having to tell myself ‘Allison, you’re here. This is happening.'”

23:00 – “We got the genetic confirmation back two weeks later, but honestly, the diagnosis didn’t matter to me at that point. It was in his body. His aorta was huge. It was there. I didn’t necessarily need a name for it.”

24:40 – “When we got the diagnosis, I had to face the fact that it would only get worse. It would only get worse. This is the painful thing about chronic disease.”

25:30 – “I had to accept the fact that I am a mom of a sick kid who is not gonna get better. It was a radical, radical acceptance. It was radical. The journey was very difficult. The first year after James’ diagnosis was a very dark time for me and my husband.”

26:30 – “When you’re faced with this kind of grief, with this kind of loss, the only way through it, is through it. You gotta walk through the fire.”

27:00 – “Whenever I look my kid in the face, I know he is sick, and I know this could kill him.”

27:15 – “I had never felt that side of unconditional love where you don’t just love the person because you love them. You accept that they are non-permanent, just like you are. Just like everything is. That added this richness, and frankly beauty, to how I loved my kids and how I love people in my life.”

29:30 – “This realization and this experience is my superpower. I have so much more courage and bravery than I ever realized I had.”

32:00 – “Every single day is an opportunity to teach my kids to be more resilient, to have compassion, because they’re gonna need it.”

38:15 – “We’ve got these gigantic brains that can think of the past and the future, and it’s really to our detriment a lot of the time.”

38:30 – “Realizing all I have is this present moment with my child helped my parenting because I could bring that focus and concentration to look at my children and respond to them.”

43:15 – “In this process after James’ diagnosis, I discovered some ugly things about myself.”

44:15 – “After James’ diagnosis, I felt so isolated. It wasn’t just because I was going through this thing. I know people were interacting with me and thinking ‘I don’t know how she’s dealing with this. Do I talk about it? Do I bring it up? I pity her.’ I felt the pity from people. And that’s what I realized I had been doing [with others, too].”

46:15 – “I have this opportunity and the shifted perspective to really dig into people’s tragedies and be there for them. Like truly. In a way that I just could not be before.”

47:30 – “If you haven’t lost something important to you, don’t worry, it’s coming. This is the human condition.”

50:15 – “I came into this with a very strong yoga practice that I had built since my early 20s. I had a foundation of mindfulness in the body and inside my own head that served as a great starting point for me.”

50:50 – “One of the interesting repercussions of James’ diagnosis was I really questioned my purposed in life… suddenly I knew, my purpose in life was to be the head of this family.”

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