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.

Today’s posts are from May 19, when we started to admit that things were still getting worse. First up is the CaringBridge post I wrote:

The doctors come in every morning to check on Samantha, and today that visit happened to be at the same time as Samantha’s therapy. We talked with the doctor about some of our concerns with things we’ve been observing lately – Samantha’s one eye has been drooping a bit, and that side of her face seems to have some sagging. Not a lot, but certain mouth movements show it. The therapist also confirmed that she has some muscle tone issues on one side. We talked about how we’re not seeing her track things with her eyes and that she doesn’t seem to respond to noises much. The doctor said that these could all be signs of the brain damage taking its toll. Apparently the nerves for hearing and vision as well as those for the drooping issues are all in the same area, in close proximity to where the original damage showed on the MRI. So perhaps this is more signs of how the illness has progressed. 

Truthfully we’ve been noticing the signs for a couple of weeks (the vision and hearing) but were too scared to talk about it. The drooping is somewhat newer. All of this is scary to us – should we be concerned that she is getting worse? At the same time, the physical therapy is really doing her a lot of good. She is getting stronger and relaxing some of the muscles that were very tight before. She moves her legs on her own a great deal and even relaxes her hands at times. We know that God can do amazing things with the human brain and that babies especially do well with lots of therapy. We also know that Samantha responds to bright light and to loud bangs, so the hearing and vision are not completely gone. Many of these things will be ongoing questions as the nuances of sight and hearing are hard to test on babies. With time we will know more. We continue to remember that we are in God’s hands with all of this and we ask you to keep praying. This time prayers related specifically to these senses would be appreciated.

The rest is a blog post from that day, titled, “I am still confident of this”:

In reading my devotion today, I came across these verses: “I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.” Psalm 27:13-14. I spent a good deal of time on the verge of tears over these words from God. We had a harder talk with the doctor this morning – it’s looking like Samantha has some problems with her vision and hearing and possibly some issues related to one side of her body. I’ll write more about that on the caring bridge site. But for me these verses are what I have to cling to. I hear God’s promises to us in them.

One of the hardest things in my faith journey has been issues of certainty. I know that God promises He will give us whatever we ask in His name. I know God wants good for us. But I also know that not everything we desire is what God deems best for us or for others. I’ve been thinking a lot about how Jesus prayed in the garden that the cup be taken from Him, but also asking that the Father’s will be done. I’ve found myself praying similar prayers lately. I keep asking God for a miracle, for total healing for our daughter, for restoration of her brain. But maybe what I am asking for is something that isn’t God’s best for us or her (and yes, I know I just sounded like Joel Osteen. I’m sorry).

The other thing is, it’s hard to feel sorry for myself or her while we spend time in this place. I have tried to ask, “why us? Why her?” but when we walk around and see some of the difficulties faced by so many of the kids here, I find the question changing to “why not us? Why not her?” What makes one kid have no problems while another has many? This sinful world is full of all kinds of trouble. And while I wish that Samantha didn’t have to experience the pain and difficulties that she already has, not to mention the ones that lay ahead of her, I can’t keep her from experiencing pain or difficulty in this life. Jonah (our stillborn son) is the one who didn’t have to go through those things. Ok, I guess I can’t speak for what happens in the womb, but for the most part he escaped the difficulties of life.

I still pray that we can protect her from unnecessary pain and suffering, but who defines what that is either? For example, to listen to her cry, diaper changes and clothing changes and baths are unnecessary suffering. But we know they are for her good. Similarly, I know God sees the bigger picture. We are merely infants in the light of eternity, struggling to understand what we face every day. And we cry out to Jesus in our pain the same way Samantha cries out in her discomfort. Our lives are completely in God’s hands and we have to trust Him, even when it’s hard.

Next post coming tomorrow.