I Have Made My Choice

It’s 3 am and I’m laying in a hospital bed. It’s familiar. I’m trying to think how many times I’ve been in the hospital over the past 10 years. Way more than I can count. Over 50 for sure. At least 11 different states as well. There have been years I’ve spent more days on a hospital floor than in my own bed. I have mixed emotions every time I enter the doors. I’ve had surgeries, transfusions, tubes and mental health holds. I’ve dyed Easter Eggs with nurses, taken up paper flower making, written countless posts, and spent time with visiting friends. I’ve filled rooms with cards and flowers and worship music (my love languages 😊) and prayed that both my heart and every nurse and doctor would be encouraged and met with a different kind of peace and hope as they enter my room. That my smile would be my ministry and share the love of Jesus.

So, in some ways today feels very common. Almost routine.

And yet it isn’t. My body is failing.  My heart is so very weak. The risks of this surgery are great enough that even though it’s considered “necessary and emergent,” it’s weighty and perplexing.

I spent the last 6 months in Florida. It was beautiful, and hard and I’ve talked at length about how walking through the last 6 months and making it to the other side was confusing and exhausting… and miraculous. 

I have a terminal illness, and yet year after year and crazy circumstance after unbelievable tragedy I am here. I am alive. 

As I lay here in this familiar hospital bed: a 33 years old girl with a lifetimes worth of hospital admissions, my second fractured hip, a paralyzed GI system and a failing heart I feel flooded with emotions. I’m sad for all the dreams I’m not accomplishing. I grieve the relationships that didn’t weather this illness or stopped growing from distance. The inability to continue pursuing the calling in which I taught kids to worship and declare the love of Jesus over their lives. I feel the weight and anxiety of where provision will come from since I can’t work and have outlived my dollars because I’ve outlived my “death sentence.” I feel a level of embarrassment from constantly experiencing another “you won’t believe this” circumstance. There’s not a gofundme code for scleroderma. I’m lonely a lot of the time. There’s not a clear path forward from terminal without a timeline.

No path. And yet… I realized something in the wee hours of this morning, in the familiarity of the moment amidst the uncertainty of the future.

Truly, in this dying… I have learned how to live. 

The motivational speakers say it like this: Success leaves clues. And if that’s true, my living is less about me and my disappointments and disease and a whole lot more about the hope that has carried me, the joy that has sustained me and the grace and grit I’ve developed despite my diagnosis. 

I am alive. I am here. And I am a walking miracle. There have been times I felt like I needed to apologize for living beyond the days they said I would, or not knowing how long this journey will last. What a trap. My fear that you won’t understand has kept me from using my voice to tell you, and tell you often, the why of my success. Is it daily sunshine and rainbows? No… I’ve chased the sun to Florida, Hawaii and beyond and found there’s still rain you can’t outrun. 

But I am stronger because I chased it. I have won victories because I just keep fighting. If I’ve been successful at anything over the past 10 years… it’s been staying alive. 

The clues, the keys to my success have been the hope that may tremble, but still stands as the solid foundation on which I plant my feet. The joy that comes from knowing that whatever the future holds… Jesus wins. My healing is already bought and assured, whether I fully experience it in this life or the next. That’s the miracle I champion. Me. 

So the medical update is this: I am here in the hospital and hip surgery to repair my fracture may happen as soon as today. The statistics say that if I survive, on average 50% of patients will die within 6 months. 6 months… I mean, they can’t even get creative with my doomsday prognosis’, right?

Instead of carrying statistics into the operating room, I’m bringing with me the clues of success of living beyond them. The miraculous moments of the last 6 months— a trip to Hawaii and precious memories with my sister, a bike ride to the beach with my bestie and her babe, endless seafood buffets with my most faithful, Disneyworld giving me an annual pass. A little SUV with leather heated seats. An infection free mouth that holds a smile more beautiful than I could have dreamed.

#terminalAINTterrible is the catchphrase. 

Life… life is terminal. But today is a gift and if I’ve learned anything from this fracture, from the last 6 months or the 10 years prior to that.. the only choice we can really make is if we will choose to LIVE with the days we have. 

I’m having this surgery despite the statistics, I’m fighting this battle in spite of my fear. 

I’m standing on hope.

I have made my choice.