A Past-Due Update

In recent weeks, the day is rare that I allow myself to be angry over the way my family's life has spiraled into an emotionally untouchable place. More often than not, my protective wall is erect and in place, blocking out the fears, frustrations, regrets and anguish that would otherwise blacken my spirit and weigh me down. I know that putting up walls is a form of destruction for some, but for me, it's a means of survival.

But sometimes, and despite my attempts at self-preservation, I feel the heaviness of all that's happened. Of how my life hasn't gone as I'd hoped it would. Of how I've seen the face of real, horrible pain in the eyes of one I nurtured even before his birth. Of how horrifically unfair it is.

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The text above is the only surviving content from a long entry I wrote late Wednesday night. Blogspot had major publishing issues that evening, but sadly, I didn't know until I'd already hit submit. When I tried to go back and retrieve my text, all was gone but the paragraphs above. I'm leaving them as they were written purely because I think they convey a powerful message and give insight into my frame of mind at times. I say 'at times' because I don't necessarily feel as I did that evening at this moment, but am sure that I will once again. Do with it what you will.

We're doing okay here. Logan is continuing to do well at home, just as we knew he would. His numbers have remained stable, so he was released by the BMT team Wednesday for not just one but two reasons: He's doing better than expected, and so he can begin his course of 'just in case' oral chemo drugs. Dr. W reiterated that the MRI results looked "great", noting that there were still nodules in the brain and spine, but that said nodules had remained stable since the previous MRI --roughly 50 days earlier and prior to the BMT cycle-- so they were pleased. He was impressed by how far Logan has come since his low point after he'd developed VOD and was SO ill.

He stopped short of calling it amazing or miraculous, but I know it is. Only a month ago, Logan was on high-flow oxygen and unable to take more than a few steps at a time. Tonight, he danced in enthusiastic, spirited fashion along with he and Abby's recital DVD from last year.

What a difference a month makes. I'm grateful to have seen God's hand work in such a bold way. I wish I had the faith to share those observations in person; it's easy for me to hide belong this blog and type the words, but I turn inward when I'm sitting in a room with medical staff who have high degrees and have devoted their lives to saving those of others. I should do it anyway. But boldness doesn't come naturally to me. Not when I'm face to face with others. It's much easier to think it and say nothing.

I guess I feel okay. I still worry. As I said before, I can't just turn it off. I worry that Logan's eye looks off-kilter again, even though I know that the nerve is badly stretched and will likely take a long while --and potentially a surgical procedure-- to right itself fully. I worry whenever he does anything that seems abnormal. I wish I could have a normal life again, but I know I can't. At least not the same kind of comfortable normal that I see along around me and covet. And that's not okay with me yet, but I'm working on it. Though I know it's okay that I'm not okay with it, too. I'd have to be superhuman to be okay with everything that's happened. And I'm not, nor do I expect to be. I expect to be the best version of myself, no more, no less. And that'll be good enough.

Otherwise, we're just here, living in the moment as well as we can. I'm working on believing Mark 11. I'm working on remembering to pray every day with the same intensity that drove me for so many months. I guess I'd say that I'm working on not becoming complacent, on remembering to keep my armor in place. I thank all of you for continuing to pray for Logan's health and continued wellness, and for the rest of our family. I thank you for asking your friends and families to join Logan's team, and for following along with me as I ramble on.

Have a happy and safe July 4th weekend. Blessings to you.