This is part three of our epilepsy story. You can read part one and part two here.
Summary of the story so far: Tarica is in the ER at Children’s Hospital of Pittsburgh after having a grand mal seizure on Tuesday morning. We still don’t know why she is seizing repeatedly. It is now Tuesday afternoon.
* * *
The nightmare started as restlessness. What child wouldn’t be restless, stuck in a bed all day? Her brain was the problem, not her body. And she was hungry. She was thirsty. The IV—she picked at it, and I eased her hand away. I distracted her with a toy a nurse had brought in to entertain Micah, but it didn’t last long. She tried to climb off the bed, and when I pressed her back onto her pillow, she fought me.
“Can you grab her legs?” I said to Linford. “She’s trying to kick me.” I clasped Tarica’s free hand tightly so she wouldn’t yank out her IV line. With my other hand, I held her down on the bed while Linford cuffed her ankles in his hands.
A pair of neurologists came in. The CT scan looked clear. An MRI would provide a more detailed picture of her brain. I found it difficult to concentrate on their words; Tarica twisted and arched continuously under my hands.
The afternoon wore on. One of us—and sometimes two—sat beside Tarica, trying to keep her still and on the bed. She became disoriented. “Are we at Beth’s house? Are we at Sophia’s house?” she asked over and over again. “Who changed the room?” Her words became slurred, her thoughts murky.
When they wheeled her upstairs to the seventh floor, I sat on the stretcher, holding her, holding that determined free hand, one of my legs pinning hers down.
As we entered Unit 7A, she became even more agitated. I tried to distract her. “Look, there’s a frog on the nurse’s desk.”
The stretcher moved, and the frog disappeared behind a pillar. She nearly bucked off the stretcher. “I wanna thee frog. Where ith frog?”
I lashed her down with my arms. “Just wait. The bed will move again, and then we will see it.”
The bed moved; the frog appeared. “Look, there’s the frog.” She relaxed, but I couldn’t. What awfulness had invaded our sweet little girl’s brain?
In room 721, Tarica was transferred from the stretcher to a bed, more space to fight and thrash, enough room for one of us to lie beside her and hold her down. We learned the MRI wasn’t happening until tomorrow, so she could eat now. Now? When she was nearly insane and completely unreasonable? But starting at midnight, she could have no food or drink until after her MRI and spinal tap were done on the following day. She had to eat now.
Food arrived, and like the frog, it became a distraction of debatable value. She would cram a bite into her mouth with shaking hands, but then she would writhe and scream and try to climb off the bed.
The hallucinations began. Bugs crawled on the walls. She became hysterical—oh, her eyes, her eyes—screaming that a man was trying to get her. She reached out and tried to grasp hold of objects dancing in the air before her, or tried to bat them frantically away.
Sometime in those unholy hours, she cranked her head my way. “Who are you?” she asked.
My mouth went dry. “Don’t you know who I am?”
“No,” she said, studying my face in a detached manner.
“I am your mommy.” I tightened my hand around hers.
She stared at me blankly.
Our Tarica was gone. In her place was a savage child. I held her against me on the bed, my arms and legs restraining her flailing limbs, and prayed. “God, please let her fall asleep. Please, God, please, oh, please.”
* * *
The hours bled into each other. I looked at the clock, but the hands said nothing that mattered to me.
A nurse came in, masked and gowned. Tarica was under isolation, according to a red sign hanging outside the door of her room. Sometimes a brain infection can create seizures, and until we knew if she carried something contagious or not, every nurse and doctor donned pale yellow gowns and masks before entering.
“Can’t you,” I said to the nurse, “please sedate her? She’s been fighting for hours, and she’s exhausted. We’re all exhausted.”
No, sedation isn’t an option. Just keep her as calm as possible.
I wondered what the nurse would do if we would throw our hands into the air and collapse. What would they do if we allowed Tarica to yank out her IV line, climb off the bed, rip the wires off her head? Would they find someone else to hold her down? Would they sedate her then?
One of the nurses—I cannot remember which one; all distinctive features except for eyes were hidden behind masks—was surprised when Micah babbled from the floor by the sofa. “Oh, I didn’t know you had a baby.”
Another nurse with familiar eyes said, “He’s been such a good boy, you’d never know there was a baby in here.”
Thank You, God, for one small blessing.
The evening blurred into night. We hung on grimly to our daughter. Micah fell asleep in his Pack-n-Play, despite Tarica’s ruckus, waking only at midnight. A quick feeding settled him again.
The hospital settled into the quiet hum of the wee hours, and still she fought. Despair clawed at us. How long would this last?
Tarica laughed, surprising us. “I thee…I thee…baby Jesus,” she said, reaching out her hand, lost to a world only she could see.
Linford and I looked at each other. The hours hung haggard on his face. “I can’t take this any longer,” he said. “If this is what she has become, maybe it would be better—”
I pressed my face against the gauze cap that covered the bristling wires on Tarica’s head. I couldn’t stop the tears.
* * *
The story continues in part four.
This post brought tears to my eyes. Such sadness. And when I thought of how you must have felt when she didn’t know her mommy. I continue to pray for your family. Glad you are on the other side of that part of your experience.
That moment Tarica didn’t recognize me is branded on my memory. Like you, I’m glad this is stuff from months ago. I’m trying not to think about what’s coming. (I have a problem with crossing bridges before I reach them.) Thanks for your prayers, Jolene.
Stephanie,
First, you are an excellent writer. I’m very moved after reading each post about your daughter and this awful experience. As I’ve said in previous comments, I’m praying for each of you as you continue to walk down this path. May you feel the love and prayers of so many and have peace from above.
Fondly,
Ann
Thank you, Ann. I’m one of those people who write to process stuff, and right now we have a lot of stuff going on. (More on that in another post I’m still writing.) Yes, I do feel the love and the prayers–and it amazes and humbles me. It is a gift I do not deserve.
Thank you for sharing so honestly. I am already eagerly waiting for your next post.
God’s best to your family!
Donna
Oh Stephanie!!!!!
Dear Lord: Please give Stephanie and Linford the strength to cope with this thing that is happening to their child. Please help them to keep their eyes fixed on You Lord. Lord, we know you never give up on us, help Stephanie and Linford to not give up on You. We know Your thoughts are not ours nor are Your ways; and probably way above our ability to comprehend, so LORD please help us cope with events that stagger us. Please LORD help Tarica, we pray for a healing and peace for her and we know all things are possible through You, Oh Lord, All things… In Jesus Name, we pray, amen.
“I will lift up my eyes to the hills– From whence comes my help?
My help comes from the LORD, Who made heaven and earth.
He will not allow your foot to be moved; He who keeps you will not slumber.
Behold, He who keeps Israel shall neither slumber nor sleep.
The LORD is your keeper; the LORD is your shade at your right hand.
The sun shall not strike you by day, nor the moon by night.
The LORD shall preserve you from all evil; He shall preserve your soul.
The LORD shall preserve your going out and your coming in from this time forth, and even forevermore. Psalm 121
Prayers through tears continue………….
Thank you, Monica. The Psalms are balm to my heart when it’s hurting. I read through these verses several times and found astounding Truth each time. He will never forsake us.
Hi Stephanie, its been years!! I learned of your blog thru Shari Zooks. My heart is aching as I read your story. May God’s grace wrap you up and hold you tight! Prayers!
I just thought of you the other day. I think I saw a comment on Shari’s blog by someone named Sena, and I wondered if it was you. Welcome here, and thanks for praying.
Stephanie. You don’t know me, but I am a mother. My friend directed me to your blog, and I’m crying as I read this. Our small son was in an accident this summer and the memories of him in ICU, sedated, wired, coming off sedation, fidgety, whimpering, seizures…it’s so painful. I will remember you in my prayers.
Thank you for praying, Tracy. Your son–is he okay now? It’s hard to be a mother and watch your child suffer.
I am crying as I write! I came here from Shari’s blog and have been reading your story. It was what I needed to read today. We have had some minor medical issues with our two youngest children. They both have appointments in the next month with specialists at a bigger hospital. Today was when I found out the baby(2) is probably going to need eye surgery. Really quite minor, but felt just a bit overwhelming. Now I come here and read and am so thankful for his good health. But more than that I am so thankful that the same God that gives me strength to deal with even the minor things is there to provide you with the strength and grace for the unknown and big things! He also cares so graciously with the mother that has to see her children suffer! What a Savior!
Will continue to follow your story!
Wendy, one of the dangers of sharing a story, particularly one with illness, trauma, and pain in it, is that others can feel intimidated by having a “lesser” story. But pain cannot be measured or assessed. Your experience hurts you as much as mine does me, and I never want to imply my pain is greater. Right now, God is giving me epilepsy grace and you eye-surgery grace, and it is enough. But grace will never insulate us from pain, because God can teach us valuable lessons when we are hurting. I am glad you are here, and I hope you share more of your story. We can learn of grace and God together.
(Sorry your comment didn’t show up sooner. It somehow landed in my spam folder, and I didn’t see it until a bit ago. I’m still figuring this stuff out.)
I am finally getting back to replying to your comment. I, in no way, felt you were putting your story out there as greater. For me it was more a realization that once again, no matter what we are facing, we all have God’s grace. That was tremendously comforting to me that day and continues to be so.
We can’t change our circumstances or situations, but we can choose Who’s strength we use to get through them. May God help us to choose His!
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