I am amazed (not in a good way) at how quickly she can go downhill. When we started this journey she got very bad very quickly. Now we’re back at the hospital again, and once again things aren’t good. But despite the tests, I keep being amazed (in a good way) at how she is clinically. Don’t get me wrong, it’s very evident how sick she is. She’s in pain, or at the very least uncomfortable. Holding her is more than difficult sometimes when it seems like we’re actually causing her pain. Her head has gotten so heavy. But then she opens her eyes and after a bit of fussing can just have this peaceful look on her face. Travis is giving her a bottle (they cleared her to eat up until midnight, then she can’t have anything due to an MRI tomorrow that will require anesthesia) and she was being pretty fussy at first. Then all of a sudden she realized what was going on and attacked the bottle. She used to do that with breastfeeding too which always cracked me up. It’s just Samantha’s personality.
But now she’s screaming again. I get the impression that she’s lost the ability to distinguish between massive amounts of pain and mild discomforts, because no matter the circumstance she screams. If she’s hungry or getting her diaper changed, she can turn purple with screaming and sound so awful. And her heart rate goes up above 200. As I write now she’s throwing up her entire feed. It’s so hard not to worry about all of these things and what they might mean.
Her CSF fluid showed high white cell counts, high protein and low sugar. All of that tells them the bacteria is still attacking her. Tomorrow’s MRI will tell us more, but it’s not looking good. And I go from wanting to scream or cry my eyes out to feeling numb all over like I can’t possibly feel anything any more. There are moments when I think that I can’t possibly take any more devastation and then suddenly something worse comes and I just don’t feel a thing. We find ourselves talking about what we will do when she dies, without saying “if” anymore. And I worry so much not just about the two of us but those around us who are praying desperately for her healing, from our extended family to the church to friends far and near. I so badly want God to show His power through Samantha’s total healing in this life, for the sake of everyone praying for her. But I still keep thinking about how total healing isn’t possible in this life, because we still have pain and sin. Nothing this side of heaven is total health.
I have prayed many times for God to take her home if it will spare her from more suffering. For some reason she has stayed with us this far. I don’t know how much longer she will be with us. I asked Travis if he thought that God knew we needed more time with her. He said he can’t speak for God. What I do know is remaining faithful in the midst of this kind of pain is harder than I ever imagined. Some songs resonate so powerfully, but I’ve found that certain contemporary Christian songs annoy me these days. They are written/sung by people who can’t possibly understand suffering, because they are just plain dippy. Maybe that’s why I seem to keep coming back to putting Casting Crowns on shuffle on the iPod, because their music speaks about pain at every turn. In at least four of their songs they mention a “dry and weary land.” It’s so true. That’s what this life is. Come Lord Jesus. Come quickly! If not to end the world, then at least come and rescue your servant Samantha. I don’t want to let her go, but I don’t want to hold onto her when she is ultimately God’s child, not mine. I can only claim her as my child for a brief window in the light of eternity.
There is something to be said for the gift of intimacy God has given to Travis and I in this whole ordeal. Nothing is quite like looking into your spouse’s eyes as you both well up with tears. We’ve held each other more in the past five weeks than we have in our entire marriage before this, or at least it seems like it. No one can quite understand the pain we both feel, because no one love her the same way we as her parents do. I cannot express how thankful I am that we keep turning towards each other instead of away. Don’t get me wrong, we’ve had our moments, but they have not been because of her illness. They’ve been the petty issues that no longer matter when things get critical with Samantha’s health. When Jonah died it seemed to separate us. With Samantha’s illness, it’s drawn us together.
Of course, then I start to think that we’ve had to go through this for the sake of our marriage. I know ultimately that’s not true, but it’s hard to not go down that road and feel responsible in some way or another. And I know we aren’t responsible for this mess. It’s just hard to not start going down stupid roads sometimes.