an update on Glory.

Ok. I'm ready to write this. 
I have never put off a post with such intention:). 


Also, all hospital pictures are old. 
We're not currently in the hospital, 
we just thought these were a little too sad to post while we were in the hospital:). 


Glor during her first EEG, if you know Glor - you can imagine how easily she ripped every. single. one. of those glued in sensors out upon waking:)
I'm sure you can imagine, but the morning I found Glory seizing was by far the worst hour of my life. My heart breaks for those of you who know what I'm talking about, or for those of you who have experienced far worse. I don't say that lightly. My heart breaks for you. We got a video monitor mostly because I was scared I'd never be able to have another morning quiet time again, always thinking back to that morning. I was just sitting here, drinking coffee, praying and reading and she was in her room, going through something awful physically, convulsing and fever skyrocketing. And I didn't know. And then I found her and it was even more awful. I knew nothing about seizures but I knew they didn't normally last fifteen minutes, thirty minutes, and keep going. The EMT first assured us, it was probably nothing, but as she passed the four seizure mark and kept climbing, there was no more assurance. And then they couldn't get it to stop and oh ya'll. It was awful. 


It was so awful. I wish I could just cry through typing. 
As I write this, I'm just crying my eyes out and Nick is looking at me knowingly and hilariously. Hence, why I put it off so long. 
She is just so special. I know you know if you have any kids, they are all SO SPECIAL. They're all our favorite. They're all like our hearts walking around outside of our bodies. 
So to see the most full of life person I've ever met, completely detached and out of control and lifeless, with no guarantee we'd see her as herself again, was heart-breaking. To hear my husband crying her name and groaning Jesus' name in the next breath, was awful. And even when she woke up, she wasn't our girl. She couldn't talk, couldn't talk, she was belligerent, angry, upset. For days. Some of which the doctors expected, but as it continued and even increased, we could see the look of worry in doctor's and nurses. At one point, they even told us, they needed to see "a new child" in 24 hours or they would assume she'd suffered some other intense brain injury. It was all a little awful. So we started praying. Well, shoot, we were already praying. We started praying a little more vigorously. 


the awake pictures are more sad than the sleeping ones. This was taken 48 hours after seizures, she was still pretty incapable of talking and was consistently hysterical. I'm smiling because she's alive, but terrified she's not coming back.


And that's the part I want to tell you about. 
All in about a span of an hour, the Lord really brought Nick and I to our breaking point of concern. Something was NOT RIGHT. We'd received the news of what was causing her epilepsy, but something was still very wrong. In all honesty, something had been incredibly wrong with her for weeks and we were no longer willing to accept that any of it was normal or ok or just a phase. In that same hour, her wonderful doctor sat us down and concurred - this was not ok. She should be walking and talking by now. She shouldn't be so upset and she  shouldn't be so upset that she is biting IV's out with her teeth. She should be sleeping more than 2 hours in 24. Friends who came to pray agreed and encouraged us to pray, something was not right. My sister, without prompting from me, but only from the Spirit, arranged a group of people to pray through the night. We needed a break through. 


When all the visitors were gone and she had passed out after an hour long fit, we shut the door, asked the nurses for privacy, and went to battle. For our girl, for our family. We repented for the things we'd let creep into our hearts and our family, and we just cried out - in Jesus' name, for protection and healing over our girl, for the Lord to use this situation to bring people directly to Him in salvation, for her to love and long for Him again. To have our girl back. To give us the strength, as parents, to move forward pointing our children to Christ alone, to trust in the gospel alone, to proclaim His name alone as good in this world. We prayed specifically that not only would the Lord make her "a new girl", but that her doctors would acknowledge that and we'd give all glory to God. 


This is where I have a hard time writing about it. Because in that space of time, He really DID NOT HAVE to heal her. He still would've been good, and holy, and loving, and real. I pray that we would've known the bad news of the gospel and the good news of the gospel just as strongly the next day, had she woken up with a deteriorated  condition. But the Lord wrote her story otherwise, and we are of course so thankful He did. She woke up a new girl. She could walk and talk and feed herself. There were no more violent fits, only normal three year old ones. She slept all night and all night every night since then. (sleep has been a big deal with Glor's epilepsy. We're not sure if it's chicken or the egg, but she stopped sleeping a few months ago and it's kind of a weighty connection) At some point, as I was sleeping that night - I woke up and thought, "A) She is STILL sleeping. Praise God. and B) This room is filled with angels guarding and fighting for her, I'm sure of it. I can go back to sleep." The next morning, her doctor even said, "well - she is a new girl"


sweet lady
Since then, she's had no major seizures. PRAISE GOD. We went home with an appointment for a follow up EEG that happens in the next week or so, some emergency seizure meds, daily meds, and a kind of broad understanding of epilepsy. Since then we've read a lot, we've researched and changed our diet a bit more, I've done a good bit of overreacting and long periods of video monitor watching. She's playing and laughing and sleeping. I worry constantly that she's having small seizures and Nick does his best to reassure me. The doctors have said to try and not worry too much till we see her next test results, that it should hopefully tell us more what epilepsy looks like for her. 


We're of course praying for good news, but we're trying to live from a place that knows the bad news of the gospel is so much worse than the worst news we've ever received. Our sin and need for Christ is so much worse than any medical condition, any injury (emotional or physical) we could incur. And the good news, better than any blessed EEG. That Christ died for us, longs to have a relationship with us, shed His blood for our adoption into the family of God - that we'd be called sons and daughters instead of sinners and slaves. We want our whole family, shoot - everyone we know, and of course Glory, to be able to rejoice in the good news, outside of anything - in spite of anything - because of anything that could happen to her for the rest of her life. 
As easy as that is to say, and as hard as it would be to do. 
That's the prayer. 


The first morning Glory was in the hospital, they had to cut her shirt off while she was seizing and it seemed like such a hilarious sadness that her shirt was cutoff. She'd painstakingly picked it out the night before and it was so sweet, and also my sister had loaned it to us from her kids, and she was there in the hospital when I realized it had been cut. I remember feeling so sorry about that shirt, though I'm sure my sister never thought about it again:). My mom swooped the shirt up, washed it, and saved it for me and gave it to me last week. She knew me well enough to know I probably wasn't ready to see it, so she hid it and told me about it later. I love her a lot for that. 


I brought it home and everytime I see it I'm swelled with these thoughts. 
This jumbled update I'd like to write. 


Glor & the boys tackling the daylights out of me during family fun night. Yep, I'd say she's doing good. 
Glory is doing great. So great. 
Today, she is doing so great. Praise God. 
My sadness, fear, and pain from that morning are really large and in the small bits of time I access them - I'm overwhelmed with the knowledge that the Lord cares more for her than I do, that He hurts over her hurts, 
even when He knows the glory He will get from them. 


And yet, in spite of all the hurts in the world, no matter what comes, 
we have good news in Jesus.
In Christ Alone. 

Also, I'll be the one to break the awkward pause and talk about something light after something deep in a conversation:). Make sure you entered the giveaway yesterday, mkay? You don't want to miss out on it, it's open till Thursday at 5pm.
And, if you want a naptime diaries print for Mother's Day, you have until 5pm TODAY to order.