Tuck N' Roll

I would like to begin this post with saying how utterly grateful I am... That we have amazing, supportive friends and family. That Kai is literally in the best situation, for her situation, possible and she is doing great, comparatively. That she is HERE.

That said, I have to admit, I do have a defined emotional fall-out whenever we have a stint in the hospital and a month or more of follow-up testing and appointments. I confess this to you, oh internet, because I need to confess. 

I feel guilty about this because I know... I KNOW there are so many others in much worse and dire situations. But, (there's always a "but", isn't there?) during an emotional collapse I had tonight, I realized it's because I am reminded by these situations of how close she was to death. I still have regular flashbacks, randomly, of going through that intensely desperate time with her, wondering if she would survive and even more so when we have a scare like this most recent one. Ryan and I both wake up daily, wondering and fearing if some complication will develop or if she will go into rejection. 

I think every parent has an awareness of the fragility of life and fear that something will happen to their children. Parents of children who have been or are terminally ill have just been a little closer to that reality and have experienced that possibility, first hand. We live with it every day, even when our children are in good health.

Kai's specialist, Dr. Kaufman, reminds us almost every time he sees us that she was within only a few days of dying when the rushed Ryan through approval to donate. Had he not been a match, he tells us, she would not have survived. At this point, if she were to go into rejection, it would be difficult to reverse because she is so far out from transplant. The good news is, the further out from transplant she is, the less likely she will reject. However, viruses like CMV can certainly be dangerous. I often feel like we're standing right on the edge, trying not to fall off.  

So, I had a little meltdown tonight. Not the first time and certainly not the last. It usually happens as we are coming down off a roller-coaster-hospital-ride and I have a moment to pause and reflect. The memories and the knowledge that we are balancing on that fragile cliff between life and death hit me and I succumb. And, then, I try my best to suck it up and move on because I know we're all in this battle together and we are very lucky to be on the winning side of that steep drop.