I just want to live, it burns inside

Today will be a very busy day of meeting with people, possibly getting a Hickman port put in under my collar bone (TPN feeding port), learning how to hook myself up to the TPN, and how to care for myself at home.There are still many details to iron out before they’ll let me go, and honestly, I don’t want to leave until I know exactly how to care for myself.

So I’m excited about being home with my babies, but uncomfortable with the idea that I’m not going home to “normal” life.

This life of mine is forever changed and it’s pretty daunting. I don’t know what to expect, what I’ll have energy for, or how I’ll balance it all since I’m less than 100%.I’m a little bummed (well, to be honest, it’s more like quite disappointed) that I’m not headed straight to the transplant center, and this is where I detest money.

Gone are the days of good faith, good will, and assistance because people genuinely want to help or genuinely want to do what’s right. Money, greed, and power drive so many…Christians even. The tagline that it’s “just business” is a load of junk because it’s not just business to me. This is personal because this is my life, and a terribly important organ was accidentally destroyed. I want to live.

I want to be as close to whole as possible and I want to live longer than the 5-year expectancy with TPN. I want to see my children graduate high school and college. I want to see them walk the aisles with the spouse God is now preparing for them. I want to watch football games, ballet recitals, and church musicals. But most of all, I want to see my children come to know Christ in a very real and tangible way, giving over their lives to his direction. I want to see Jeff baptize them. I want to teach my children to invest in others, so that every choice they make brings honor to holy God.

I know that none of us are promised any day beyond what we have seen, and yet, I want that to be God’s decision, not man’s and I want to be in a position where it’s possible to have a longer life.

I just want to live. It burns inside.