“Mom, do you think this is what my life is going to look like from now on?”

I can’t hope for some type of remission from my lifelong syndrome. I can’t hope that a doctor will completely fix the problems. I can’t hope for medicine to heal me. My realistic expectation for my life includes pain, suffering, and physical complications. I expect to endure all of that as I hold onto hope that God is working through it all and will one day end it all. But that’s the key: one day. One day isn’t today.

I’m sometimes mistaken for a “glass half empty” gal because I expect health complications. I’ve found that people often struggle to understand why someone with a disease/disability has that type of outlook on life. Instead of trying to change a person’s perspective, try to understand it. Ask questions. Learn. I expect health complications, but I also have steadfast hope in God’s faithfulness to do something good through the complications. What is viewed as a “glass half empty” perspective is really a “glass half full” view of God’s faithfulness.

My advice: Remember that some people can hope for remission, but others don’t have that option. Some diseases/disabilities do not progress over time, but others do. Some people can realistically expect to live without health complications, but others can’t. I emphasize the importance of having conversations about these issues because making incorrect assumptions can frustrate someone with a disease/disability. Sometimes that person doesn’t need you to say, “I believe it’s all up from here!” Instead, that person needs you to understand what life realistically looks like.