Meet Jessica: Warrior mother battling a rare disease

You make a life out of what you have, not what you’re missing. -By Kate Morton in The Forgotten Garden)

Warrior mother battling a rare disease

Jessica’s Story

I got sick in Fall 2005. In a matter of weeks I’d become so weak I could hardly get out of bed. I was diagnosed with Postural Orthostatic Tachycardia Syndrome, which basically means my heart can’t keep up with me. There is no cure. Suddenly every single dream I’d had for my life was gone. I’ve spent the last 14 years searching for ways to reclaim the dreams I lost. I registered as a student with disabilities and slowly finished college. I met an awesome guy who was crazy enough to marry me. We planned a huge block of time between our wedding ceremony and the reception so I could rest. Even still, I was so sick from the exertion that I spent our entire honeymoon recovering.

A mother with a rare disease

After graduation I started a company designing sewing patterns that are sold in stores worldwide. (We figured out a way for me to sew in bed so I can work longer hours.) After ten years of trying, we were able to have a baby. (I bought a motorized wheelchair instead of a stroller so I could take him for walks.)

What was the hardest thing you went through during this time?

Living a life I never wanted. Every little detail of my life changed when I got sick. Big things like never getting to hold a ‘real’ job or only having one kid. But also little details: the haircuts I choose can’t be so time intensive to wear me out, the car I drive has to have a certain kind of chair, the house I live in needs to be close enough to stores so that I can drive to them etc. I NEVER get to do something just because it’s what I want. Everything is decided by this illness.

What advice do you have for people going through a hard time?

A good therapist can help you find joy in life, even if that life is one you never wanted. I’ve seen a therapist off and on ever since I got sick and it is honestly the only reason I can live a productive, happy life.

What has helped you the most?

People who ask and people who listen. A lot of people feel awkward inviting me to do something or asking about my health. I get it, they are just trying not to be rude. But in the end, the people who say, “Hey, would you feel up to going to a movie?” or “Is it too hard for you to_____________”, are the ones who are really helpful. I can try and put people at ease as much as possible, but it is so nice to have someone who isn’t afraid to just jump right in and be my friend.

Share an update on your life now

Our little boy just turned one this year. He goes to daycare three days a week so that I can rest. Our house is also full of baby fences so I can lay on the couch without him wandering off too far when we are home together. We are always trying new POTS treatments, but are dedicated to finding joy in life even if my health never improves.

Follow Jessica’s journey here:

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