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Tuesday, April 3, 2012

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. 

5 comments:

Rinny said...

Wow. I am speechless.

PRAISE THE LORD!

Hannah said...

Cried through the whole thing. Praise God for her life!

Carly @ Mason's Roost said...

My heart ached and rejoiced all at the same time while reading this. I don't think there is anything more humbling then being slammed with the reality that our babies are not ours. They are the Lords. He is in complete control and we most certainly are not. After learning about Masons heart defect there was one night I sobbed and begged God "please don't take him, I want him, please don't take him!" That humility has caused me to look only to God in fear, in thankfulness, in awe. thank you for writing this all out. XOXO

Hannah Poulson said...

Sobbed my heart out reading this Jessi, especially as I'm struggling in these days parenting Rachel due to her entering terrible two's. Very humbling. Thank you God for the Connely family, thank you for Jessi's faith in you and sharing your truth in all things. Amen sister! Xxx I may not meet you on this earth but you're gonna be great to worship with in heaven!

kaylajoy228 said...

holy cow just got MAJOR goosebumps!! your faith in God to do great things and your praises to Him in the midst of it all are truly inspiring. thank you soo much for sharing!