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.
bethany actually said:
Oh, Stephanie. This is so beautifully written. You are right; there is no total health this side of heaven. I cannot claim to have a clue why God allows anything to happen, but I have faith that He knows what is best for all of us, and I know with utter certainty that Samantha is written on the palm of God’s hand and that Jesus is crying right along with you and Travis. When He cried in the Garden of Gethsemane, he was crying for you and Samantha. When he prayed in John 17, he was praying for you and Samantha.
Lots of love and many prayers.
Erica Eden said:
Friends in Christ, please know friends and strangers alike are lifting your precious child up!!
Healing Father, please put your hand on this child of yours!! Give comfort and peace to her and her parents!! Be with them all!! Amen!
My heart aches for you. May you feel the comfort and love of those around you and afar.
Jacqui Jarmol said:
Dear Stephanie-and Travis,
We are praying for a miracle,and weeping with you. Never have the lyrics of ” Praise You in This Storm ” by Casting Crowns been more meaningful- we can barely hear Him whisper through the Storm ” I am with you” and every tear we’ve collectively cried He holds in His hand.
We cling to the Truth that 1)He loves us with the same love that He loves Jesus; and yet He did not spare Him from the agony of the Cross.
2) He has promised to never leave or forsake us, and 3) He will bind up our broken hearts-He is indeed the only One Who can. 4) the promise of the Resurection
We love you all more than words can express
God’s Power is being shown and has been shown already. You are still standing against all odds.
Kyrie Eleison. Lord have mercy.
Amy Gilbert said:
Stephanie and Travis
I have been following Samantha’s journey daily. I am aching for you all. I found myself awake most of last night. Usually when that happens it is God’s prompting me to pray for someone or something. Last night it was you. I am praying for a peace beyond all understanding that would just fall on all of you. I am praying for Samantha’s doctors for wisdom and then just begging God for a miracle of complete healing for Samantha.
Samantha is so blessed to have you as parents. I know that everyone tells you that, but really she is very blessed. There will never be another person to hold her just right like you do. There is no one else who can calm her just with a touch or a kiss on the head just like you can. And even though she can’t tell you, she loves you more than anything and needs you to stay close to her to give her strength to keep fighting.
This has been a theme verse in our house these last few months maybe it would find you some comfort too. Proverbs 3:5-6 “Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him and he will make your paths straight.”
I pray that your path on this journey with Samantha would be clear to you and that you would remain faithful to the One who blessed you with Samantha to begin with.
God Bless. Amy
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