This blog post is part of a series that I began for telling our story. You can read the first post here.

From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.

I really want to catch up with the dates on the calendar, but to do that means I need to double-up my posts even more than I already have. So bear with me as I will post twice a day for a while, in an attempt to get better caught-up. Thanks for your patience. 

We start this with four back-to-back posts from CaringBridge, the first two written by me, and the other two by my sister. Monday, May 23 we had returned to the hospital for tests, and she was re-admitted. This was the turn in our journey from healing medicine towards hospice.

Post 1: Heading back to the hospital today. Samantha’s head has been gradually swelling and the drs here want her to get thoroughly checked out. Will update more when we can.

Post 2: This afternoon they will do a head CT and another EEG. what those tests show will determine the course of action. Please keep praying. Thankfully her head swelling is less of a minute by minute emergency than it would be for an adult. They called her soft spot a “pressure release valve.” We will continue to update as we can.

Post 3: Just talked to Travis.  The CT showed severe hydocephalus in little Samantha’s head.  Right now they are doing a procedure to draw some of the fluid out through her soft spot so they can determine exactly what the fluid is and why it is being blocked (not draining from her head).  We are praying that it is just an excess of CSF fluid and that they can put in a shunt to drain off the excess.  Anything else would be much more complicated.  Please keep the prayers coming!  We appreciate all the prayer warriors out there rallying for this precious life – thank you! ~Allison

Post 4: Calling all prayer warriors!  WE NEED PRAYERS ~ the test that they did was not the results that we wanted.  It showed no pressure, and that would indicate that csf fluid has replaced the brain tissue.  It is difficult to fully explain, but for the most past the cerebral cortex is doing all the operating for her little body.  The news that the doctors delivered was not good, and although they said they will run more tests to confirm what they are seeing, they said that it’s just a matter of time.  How much time or what the means will be determined by more tests.  We ask that you take some time to pray.  Please pray for a miracle.  Please pray that these tests prove what is shown to be wrong.  Please pray for peace.  And most of all we pray for God’s will for Samantha – but also for Travis and Stephanie. 

Heavenly Father, Please be with our precious little Samantha.  Please heal her body.  We beg that you heal her brain and let her lead a full life here on earth.  We also know Lord that she may be healed by Your almighty gift of everlasting life.  It just hurts us so to think of that now as she is so precious to so many here on earth.  We know Your will is perfect and holy, but we beg that Your will would be to show Your almighty power through her healing.  Please grant peace that passes all understanding to Stephanie, Travis and Samantha.  Please ease her pain, and wrap Your loving arms around her.  We love You Lord, and trust Samantha’s life to Your almighty healing hands ~Amen.

And this is the blog post I wrote that day, as I tried to turn our daughter’s life over to God’s hands once again, and described the moment that to this day, I consider to be the most intimate one in our marriage:

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.

Next post coming tomorrow.