glory's story.

Today is the year anniversary of Glory's massive set of seizures that landed her in the PICU last year, where she was eventually diagnosed with epilepsy. This is the first time since then I've sat down with the intention of writing that whole story. I pray it does nothing but direct all of our eyes to Jesus in praise. 


For weeks, we'd known something wasn't right. Beginning in early February, it seemed like Glory was on a mission to win the award for "most terrible twos/threes in America". She'd always been passionate, she'd always been a little on the wild side - but all of a sudden, I could barely contain her. She'd have three hour long fits where she cried and banged her head against things. The tiniest of issues would set her off for a day of crying and fits. She truly did not like people, or really even like us - and she'd always LOVED PEOPLE. I wasn't sure what to think. In my mama heart, I knew something was seriously wrong. I'd talk to people about it and everyone told me to chill out. Everyone said, she's just two going on three! She's a girl! She's emotional! But I knew something was wrong. 


The night before, it was a Saturday night. She'd had an awful day. An awful day. I was skyping with a sweet friend after she'd fallen asleep and told her all about Glory. I told her about when she was diagnosed with Trisomy as a baby. Told her about how we thought she'd die then. I told her about her hydrocephalus and her allergies and how she cried for the first six months of her life. And for whatever reason, I teared up and I confessed to my friend that I felt like the Lord was still wanting us to have open hands with her. It didn't feel like fear or paranoia, I just knew that the Lord wasn't done with her and I needed to hold her loosely. 


That night, Glory didn't sleep at all. Nick and I were up with her constantly. She wasn't upset or sick, just wandering the house. Walking around. Playing with toys at 3am. We were upset and yet, growing more used to her erratic behavior and bad sleeping. 


The next morning, I got up and was having my quiet time in my usual spot on the couch. Eventually Elias joined me and cuddled up next to me to watch some cartoons. Just before seven a.m, I think, I heard some strange noises. It sounded like growling. I was sure Glor was playing and was going to wake up Benjamin so I walked quickly to her room and saw her laying in bed, on her knees, with her face buried in a pillow. It looked like she was screaming into the pillow. I asked her to stop and she didn't. I called her name and she kept going. 


My heart sank. I ran to her, grabbed her, and the worst 30 minutes of my life began. Time was such a blur. She was on fire, so hot to the touch. She was growling and her eyes were rolling back in her head. She was obviously having a seizure and as the minutes passed - I realized seizures didn't last this long. Right? Right? 


I was screaming. Nick! Jesus! Nick! Jesus! 
The two names that help me so much. 
Nick ran around me. Calling the ambulance. Packing bags for the boys. Dressing the boys and himself. All the while, I held her and screamed at the top of my lungs. 
He screamed too. Oh Jesus. Oh Jesus. 
I'll never forget the sight and sounds of those minutes. Nick buzzing by me, while he sobbed and screamed. Her face and the sounds she made. 
She never stopped seizing. 
She was so warm. 
Elias was completely un-phased. At one point, he came and put a hand on her forehead and said something along the lines of - yeah, she's throwing up. She does this mom.

The ambulance came and in the beginning, they were reassuring. She is probably seizing because of her fever. She is probably just having a fever induced seizure. She'll be ok. I called my mom and sister in a moment of calm. She even stopped seizing for a few minutes. She could semi respond to her name with blinks. I just held her and held her in the back of the ambulance. She started seizing again. The paramedics were tender and they made it clear that this wasn't normal. She wasn't responding to any medication. 


We got to the hospital and a sweet friend came to take the boys. My mom and sister were there. The Hogans came. Her seizures got quieter and more subdued but they didn't stop. She laid on the gurney in the ER and her little toes flexed and her eyes rolled back in her head. 
I'm sad to admit my only thought was, 
"this is it, huh - Lord? this is the thing. you're going to take her." 
At one point a nurse broke down crying with me. Which was totally unprofessional and totally the most loving thing in the world. Nick prayed and the look on his face broke my heart. We both were expecting the worst I think. 


A few hours after we got to the hospital, they moved her to the PICU and explained two things: a) her seizures had mostly stopped b) they had to use so many sedatives to get her seizing to stop, they didn't expect her to wake up for days. We'd have to see what was going on in her brain when she woke up and then move forward. There was a baby in the PICU at the same time who had seized for 45 minutes and was severely "brain injured" because of it. She'd seized for HOURS. 


If you know Glory, you know she doesn't like to follow rules.
She woke up about 30 minutes after the doctor said it would take days. 
Kristin and I were all but curled up in her bed. Reading Isaiah 61 over her. 
Her eyes flickered and she moaned and flicked my hand. 
Said "mama". 


The next few minutes of relief and praise were quickly followed by three days of terror. She was awake, but she was absolutely not herself. For the first day or two, the doctors urged us to not be worried. She'd been through a trauma and it would take awhile to get the sedatives out of her system. So for three days, we held a little girl who was a broken and violent and scary version of herself. She ripped out IV's, screamed at and bit nurses, become inconsolable at the mention of her beloved brothers and yeah... she just wasn't herself. She couldn't form words the same. I can still hear her voice in those days. When she did talk, it was really only understandable by Nick and I and she sounded like sad, drunk bird. It broke my heart. Broke my heart. She couldn't walk. She couldn't really hold her self up to sit up straight. She wouldn't sleep. She couldn't be consoled. Those days were an endless blur of tests, fits, and then sitting as quietly as we could when she would finally scream herself into a few minutes of sleep. We kept praying that like the little girl in Mark chapter 5, Jesus would heal her and she'd wake and be able to eat. 

The tests were showing a small amount of scar tissue , possibly caused by her hydrocephalus when she was in utero. That was the only thing that could be causing the seizures that they could see and they had hope that she could literally grow out of it, as her brain grew, but there was a growing concern among the doctors about her behavior. She wasn't snapping out of it. The sedatives weren't wearing off. 
One night, her doctor sat us down and had a frank talk with us. 
She should be walking and talking by now. 
He said he needed to see a different girl in the morning or else we'd start back as square one and start evaluating just what sort of brain injury we were dealing with. 


And then, a few important things happened. In a span of about an hour, a few different visitors came into her room and saw her behavior and were bold enough to ask us if we'd thought anything about Matthew 17. The story where Jesus heals the little boy with epilepsy by casting a demon out of him. It wasn't a crazy jump to make looking at her, I'll tell you that much. Those visitors came and left and all at once, Nick and I looked at one another and just knew. Not necessarily that she was demon possesed, but that we were fighting a spiritual battle and we'd been fighting with the wrong weapons. 


We knew what we needed to do. 
We asked the nurses for some privacy and closed the door. 
We pulled out our bibles and the next time Glory fought herself into sleep, we went to business. We prayed for what felt like minutes, but was actually hours. We confessed some things to the Lord, we confessed some things to one another. We called on the name of Jesus to heal Glory from whatever darkness had been plaguing her. In short, we sought the face of our loving and gracious and powerful Father and we asked him to do some healing. Our family had experienced a whole lot of breaking and darkness and pain, and we begged Him to turn the page. 


Sometime during that night, my sister felt prompted to organize a prayer vigil for us. She called on dozens of women to pray through the night. That's another thousand words in itself. As the weeks passed, I heard some of the craziest, most beautiful stories of things the Lord did that night in the hearts of those who prayed that night. We didn't know any of this was happening, but we knew one thing had changed. The fitful, sleepless, crazed little lady who had been with us hours before was sleeping peacefully in her bed. I laid on the hospital couch and Nick made a cot on the floor. I woke only once in the night and was overwhelmingly assured with one thought and one thought alone - THERE ARE HUNDREDS OF ANGELS IN THIS ROOM. I'm not sure how I knew and I'm not sure how presumptuous my faith was in that instant, but I still believe it. She was still sleeping sweetly, and there were hundreds of angels in that room. 


The next morning, we all woke up around the same time and I watched in terror and then in absolute disbelief as Glory hopped out of bed, walked cautiously over to me and said, "Mama - I'm hungry!". That morning she ate breakfast. Well, she ate breakfast about 5 times. She walked with assistance to the hospital playground and played and played. She got to go outside and pick some flowers. 
And finally, the doctor came to see her and he said, 
"Well. This is a different little girl."


The rest of the story isn't so important. Of course, the doctors were amazed. Of course, we felt relief and fear and gratefulness and more fear. My close friends know I was pretty paranoid for months and I think she may have had a few more small seizures after that. Nick thinks it was all in my head:). I know this - she never did have another big seizure. At every neurologist appointment since then, they've seen no signs of epilepsy or nerve damage. And a few months ago, her doctor urged us to wean her off her high powered anti-seizure medication. 

And that's this small part of her story now. 
Today we talked to her about it, and she can barely remember it. 
But we can. And we can give him praise. 
He didn't have to heal her. He could have left her brain damaged and seizing for the rest of her life. He could have taken her. 
We didn't deserve her in the first place and we still don't. 
And we know, we still have to have our hands open with all these kiddos. 
Stewarding them while we hold them open to Him. 
Since they're His anyhow. 


But we will give Him Glory. 
For the great things He has done. 

our glory is FOUR.

perfectly made.

if you're unfamiliar with our sweet girl's miraculous story - 

you could start here. 

and read some here too. 

she's been through a lot and God has 

gotten much glory from people petitioning 

for her life and her health. 

we want to thank the thousands of people who 

have lifted her up to Him. 

thank you, thank you, thank you. 

Oh my girl. My girl.

This has been a year, huh?

just being your wild and precious self

On your fourth birthday, I can’t think of a better way to start my day than to praise our Father who created you in all of your intricate and beautiful complexities, chose you for our family to love and shepherd and raise, and of course – sustained you miraculously throughout this last year. I’m pretty sure that if I look in your face long enough, my heart just automatically starts to praise Him. Your smile is THAT beautiful, your heart is THAT interesting and lovely, your future is THAT exciting – that my heart just bursts open and upward at the thought of you. He made you powerfully. He made you skillfully. He made you perfectly. He made you lovely.

with your favorites

So I’d love to just pray for you this morning, Lovey – and I will as soon as I put this computer down. I can’t wait to do this day with you. I can’t wait to do this year with you!

The big plans are for Dad to take you to breakfast, then I’m taking you for some special girl time and then tonight, HOT DOGS! (just like you asked for) and cupcakes with some of our friends. I hope it’s a fun and memorable day for you. I hope this year is one of the best of your life.

I love you glory-ory.

Mama. 

a quick plea for prayer

Hi friends. 
Just a quick plea for prayer. 
I have a precious cousin, Emily, who is married to an awesome man, Adam, and they have a beautiful & amazing daughter - Anna Grace. 
We haven't seen them for a few years, but have loved following their lives online and it has been a massive blessing to see their faithfulness as they've dealt with many, many issues surrounding Anna Grace's health. 
I have literally never heard Emily complain or be negative or pitch a fit. 
I HAVE heard her praise the Lord and bless her daughter through many out of town hospital stays. Her faithfulness and positivity has been such an encouragement to me. 

I won't tell you their whole story, but I will tell you - today, Anna Grace is having a big surgery on her spinal cord and they would seriously covet your prayers. You can read more about her health here, but first would you lift up some prayers that the Lord would protect & provide healing for Anna Grace today? And that He'd keep her parents in the perfect peace that passes all understanding.


I know they will give Him much glory. 
And maybe give Emily a shout-out on twitter to tell her your praying. 
And maybe share this post with a few friends:)
Thanks ya'll. You're amazing. 
grace & peace, Jess 

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.  

all our bags are packed...

and I think we're almost ready to go. 
AGH. Relief, excitement, nervousness, relief, gratefulness, joy, praise, nervousness. 
Feeling all those things. 


So much has happened in the past thirty six hours, I can't wait to tell ya'll all about it. So many specific prayers answered/miracles performed, when the time is right - I can't wait to share it all. 

But for now, we're headed home, excited and a little nervous to figure out what Glory's condition looks like at home, in our normal setting, with "those boys" around. Speaking of Elias and Benjamin, I can assure you there will be a cuddle session starting around 7:30pm tonight that might not stop for a loooooong time. 


Please, oh please keep praying for our family. For Glory in the next few days, our reentry to normal family life, rest & wisdom for us as parents, and "those boys" as they adjust to our new normal. You can pray specifically for Glory's seizures as we've been warned it would be totally normal for her to have them frequently in the weeks to come, but of course we're praying for no more, ever. And our biggest prayer is that the Lord would keep restoring her, regenerating her little heart and body to something totally beautiful and new that gives Him "too much" glory, as she would say. "too much" is always a good thing with Gloriana. 

Thank you SO much for all your emails, calls, texts, and messages - especially the ones with info/suggestions/similar stories about epilepsy. We're sorting through them and we're so thankful for the internet and this sweet sort of community that is all new. Please keep them coming and as our sleep returns to normal, I'll keep responding. Love ya'll so much. 


Glory loves you too. 
"too much". 

a testimony via music videos

There was a time when I was ugly crying in the driveway because of The Civil Wars. 

I called "poison and wine" my christian-struggling-with-depression-theme-song. 

There was a time when I'd listen to it and cover my head with a blanket and cry like a baby. 
Or cook dinner and listen to it and cry like a baby.
Or hide in the bathroom and cry like a baby. 

I can barely remember what it felt like to do that, but I know it was for real. 

These days, I wake up early, with everyone still asleep,  to put my headphones on, and dance to "the dog days are over". I even hid in the bathroom and danced to it the other day because I could tell my jumping around was freaking Nick out. So there is my non-super-spiritual/non-super-wise, real life, music video testimony of how Jesus heals. Because that's all that happened. He healed me. And the dog days are over. So, hold fast if you've got a blanket over your head while you're crying to the civil wars, or any other emotional song that brings up feelings you might not want to deal with. 

Joy comes in the morning. 
He heals. 
He brings light to darkness & rest to the weary. 

Promise.