Slow Life

My two days of testing went well this week. The right heart cath results were almost identical to the results a year ago. So I am stable! Labs were good although my kidneys continue to struggle but they appear to be stable overall. I was relieved and happy with these results. We will repeat the cardiac testing in one year. I also passed all of transplant testing to make sure I am healthy enough for the surgery and recovery. Thank you everyone for your support and positivity this week!

In this post, I told the story of telling my doctor I wanted to wait for transplant until Ava (then 10 months old) graduates high school. I am filled with gratitude that I could accomplish that goal if I pass one more round of cardiac testing next year. (Ava graduates in 2027. If I pass the 2026 tests, I will be tested again right around Ava’s graduation in May 2027.) I am SO LUCKY to have been present and not hospitalized for the entirety of Ava’s childhood.

Looking forward to the next year, my mantra will be “at peace with the slow life.” Work ethic and productivity are core values of the Midwest. It’s hard to find self worth when you can no longer work and fulfill these core values. I often have to remind myself that I can still be productive but in a different and slower way. And instead of resenting the slow life, I want to embrace the gift of time that I have. More time allows me to practice more patience and kindness in the world. I can be more intentional and more present. More supportive and more thankful. I really believe these things are needed in our world. These are the gifts I can contribute. And they have value.

I share these thoughts not to self-congratulate myself but to cause people to think about what it means to contribute in a world that values money, productivity and busyness above all else. Human beings hold value in many other ways even while disabled. They are not lazy and not content doing nothing. They have gifts and skills the world needs. Most people who cannot work would prefer to work and be productive. Few people would choose this. Remember Covid lock down when everyone had to slow down and stay home? People were miserable and relieved to get back to normal life. Many disabled people can never get back to their “normal” life.

I have more time. My heart is so happy to have this gift of more time. I hope to use my slow life as best I can. I may not post again for a while. Please assume no news is good news. Wishing you health and happiness, friends!❤️