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Ep.2 Mother and Daughter Learning To Live With An Untreatable Condition

Drive with Gwen was short one. She was in a hurry to get on a plane that was supposed to leave soon and I tried to get her to the airport as fast as I could.  Somehow we switched the subject to her daughter, Laswen. “…and she did. She had plans, she knew what she wanted, very-very smart…” Then, while trying to make a left turn, I heard my passenger saying: “For some odd reason she would hit that point of complete desperation late in the night.”

“May I talk to both of you?” I asked.

LAWSEN: “My name is Lawsen, I’m eighteen and I just graduated high school. So I started out high school and I had a goal of trying to fit in and just trying to be accepted. I was playing volleyball, getting straight A’s. It was about November and I got a back injury. I started getting super tired and I mentioned it to my mom and we thought oh, it maybe just from the mono I had the year before. So we went to the doctor and it was the first doctor of many because they just couldn’t figure out what was wrong.”

GWEN: “When your child becomes sick and then when the answers aren’t there you feel helpless. And as each week turned into a month, turned into months, turned into years, I spent more and more time trying to find a new doctor, a different doctor.”

LAWSEN: “I was terrified. We had no idea of severity of what was going on. If it was cancer or if it was something mild. So I really went from living a completely normal, fourteen-year-old life to completely different.”

GWEN: “A year pass that we realized we have to stop messing around. We had to go to the best doctors and Mayo [Clinic] is our answer. You know, that was hopeful. Somebody is going to figure this out.”

LAWSEN: “And within two days of being there they diagnosed me with Postural Orthostatic Tachycardia Syndrome. It’s a mouthful.”

GWEN: “She has no control over how her blood flows or how her stomach digests. She can’t say: ‘Stomach! Start digesting, blood start flowing.’ Those are automatic things your body is supposed to do.”

LAWSEN: “I kind of thought that that would be where things changed and when things would start to get better but it is not what shifted things or turned things around because there’s no easy fix or pill or anything they can really do to get you back to normal.”

GWEN: “She thought that would be a doctor who’d come and would be the savior; it would be me or her dad or someone else, not her. I do recall her many times saying: ‘I can’t do this anymore.”

LAWSEN: “Until one night I can remember. I was in so much pain, it was in the middle of the night. I couldn’t even cry, I couldn’t move. I was laying on the couch and my mom was across the room sitting in a chair; and I just remember I did not know what to do. So I just started praying and in the midst of this overwhelming amount of pain I felt peace.”

GWEN: “Then it became just part of our lives. I mean it was a part of our lives to basically roll with the punches.”

LAWSEN: “Before it was hopeless kind of pain and it was all consuming. Physical: my entire body felt like it was closing in. Same with mentally: it just felt like it is taking over my entire life, whether it had to do with friends, or school, my grades, my social activities. So I was lost. And then I’d say after I found God and found faith it didn’t seem so hopeless and pain seemed to hurt less. I couldn’t see the light at the end of the tunnel but I had hoped there was one.”

GWEN: “We didn’t know whether she was going to be able to graduate from high school. There was even a discussion at one point for her taking an extra year to go to school. But she was there. I really didn’t know if I’d be able to keep it together at graduation. To see her walk across that stage, you know, that was…”

LAWSEN: “Because we walked through so much we’re so much closer, we’re like best friends. I think it’s weird for people because she’s my mom. Even if she didn’t have the answers she was the person I confided in and we’d spend nights talking or hours spending at doctors where normally I’d be like at volleyball practice or something like that.”

GWEN: “I mean I wouldn’t wish this on anyone but we all have our unique path in life and we’re all affected by that. I’m much more compassionate for people in any circumstance.”

LAWSEN: “Once you feel that kind of pain so deep it goes on the flip side too. I mean you feel happiness so much more. There is a Bible verse and it’s like the pain that you’ve been feeling can’t compare to the joy that is coming and I think that is so true. So yes, it affects you, it also affects how much better things can be too.


listen to Open Conversation episodes also every Tuesday on KJZZ 91.5, NPR member station in Phoenix, Arizona, a bit after 9:30 am PST.

music by Chris Zabrinskie and Loopstache
recorded, produced by Regina Revazova

note: this content is intended for listening. This transcript might not be accurate. We advise to listen to the podcast to get full range of emotional highlights and other story elements.