When God Answers Prayer, Sometimes It Hurts

Brain surgery is not something one goes into carelessly, particularly when it’s your child at the end of the knife. We have been praying and praying, God, show us what to do. Help us make the best decision for Tarica.

Yesterday, God showed us the way, and it is both a relief and an ache.

Tarica had a seizure in the van right before we left for our appointment in Pittsburgh. I was not there, but Linford told me it was longer and more violent than usual.

At Children’s Hospital of Pittsburgh, we met with the doctor and talked about options. “Your daughter has a less than 5% chance of living seizure-free on medication,” the doctor said. “Once a patient has failed two medications, there is little gained by trying a third, fourth, or fifth.”

Brain surgery, he said, is Tarica’s best hope of living a seizure-free life. Not that it comes with a guarantee. She has somewhere between a 50-90% chance of being seizure-free after surgery. No, not a guarantee, but better than her chances on medication.

He laid out what we could expect if surgery happens, a tsunami of information. I had about reached saturation point when Linford made an odd noise. I turned to see Tarica seizing on his lap, her limbs stiffening and convulsing in turn, her eyes unfocused and fluttering. Linford laid her on the exam table, and the three of us hovered as the seizure went on and on and on.

The doctor mentioned getting Diastat (an emergency drug used to stop a seizure that won’t quit), but just then, her body went limp and she began to cry. Linford gathered her up and soothed her.

“Her seizures are getting longer and harder,” I said to the doctor. “Will they continue to grow worse?”

“Yes, they will,” he said. “Her seizure focus (the place in her brain where the seizures start) will grow, and she may develop a second focus.”

Tarica wanted me to hold her. She curled up on my lap and fell asleep, exhausted by the seizure. I felt nearly as tired as she. I have grown accustomed to seizures since March, but this one—this one scared me. This one was the worst I’ve seen yet, other than her tonic-clonic (grand mal) seizure.

If I questioned the wisdom of surgery, that seizure removed all doubt. Unless something changes, the seizures will eventually swallow up her life, and our bright, sweet daughter will be lost to haywire electrical surges and exhaustion.

We are moving ahead into Phase One of surgery. This phase will determine if she is eligible for surgery. It means a ten-day hospital stay, during which she will undergo a series of tests—EEGs, MRIs, PET scans, SPECT scans, and maybe some others I can’t remember. If these tests reveal the seizure focus, she will be eligible for surgery.

Two-thirds of those who enter Phase One do not qualify for surgery. Nothing is certain yet, and nothing is scheduled either. It will likely be a few months before anything happens. In the meantime, I watch Tarica more closely and reacquaint myself with the emergency drug, just in case.

She has not had one of those violent seizures today. I do not presume to know the mind of God, but perhaps He allowed those seizures to occur yesterday so that we could move ahead without doubt.

If only I could erase the memory of my daughter in the grip of something terrible.

21 thoughts on “When God Answers Prayer, Sometimes It Hurts

  1. Stephanie, I heard about your blog this week and just received your latest post. My heart goes out to you, even tho we have no idea what seizures are like. We have experienced much hospital life with our Down Syndrome son, Terrell who is now 16 months. I will say that in the darkest moments, the deepest valleys and biggest uncertainties, Jesus is there. To carry you. Because you won’t be able to see where to walk. But He will see the way and He will carry you through. Sometimes you will doubt His grace, your weariness of the journey you are called to walk will cloud your vision. But if you call out in faith, Jesus will meet you there. In the dark clouds, He will meet you and whisper words of assurance or simply hold you close. Praying that you will feel His grace and experience the warmth of God’s embrace as you take this journey of unknowns.

    • Welcome here, Violet. I am learning that those who know what it is to hurt are the most compassionate. If nothing else comes of this experience, I want the pain to create a heart of greater compassion in me. Thank you for the gift of your prayers and your words. I hope your son is doing better now.

  2. I’m sure you are under a lot of stress right now, but I just want to encourage you that no matter what , God is Faithful! He can do more than we ask or think! I’ll keep praying for your family!

  3. Tarica and your family who are all impacted by this are in my prayers. May God continue to bless Tarica through this struggle.

  4. Thank you for the update. I have been praying for your daughter and your family. May God continue to show the way and give you and your family strength and comfort. I am still praying.

  5. Oh Stephanie, this is so hard. Ed read this to me this morning while I was making breakfast and I just couldn’t shake the sight of you watching your daughter seize on the exam table.

    I’m glad you can see God’s mercy even in this but how I wish you wouldn’t need to go through this.

    Prayers,
    Gina

  6. Stephanie, My heart goes out to you and your family… it is so hard to watch someone you love have pain…we know very little about what you must be feeling! I just want to say that my husband and I experienced the pain of 5 miscarriages before the Lord gave us our twin boys! Our twins both had several fever-matic seizures when young but I know that; that is nothing compared to what your daughter is going thru. You are in my prayers and I want to encourage you to lean/rest in the love of Jesus! He alone knows your exact struggles, questions, fears, anxieties, worries…and He alone will give you peace in the midst of your pain!(I am sure you already know all that but just consider it a gentle reminder from someone that doesn’t know you personally but is a fellow sister in Christ)
    Phil 3:10 & Phil 4:19-20
    Lifting you up at the throne of Grace~

    • Heather, thank you for your encouragement. Sometime, if you’re willing to share, I’d like to hear about your miscarriage story. For me, miscarriage was a grief just as real as having a child with epilepsy, but it was a lot more lonely. And what a glorious gift to receive–twin boys! It makes me smile to imagine your joy.

  7. Stephanie,

    I’ve found your blog through Gina’s, and came right over to read it – and also, I hope, to give some hope. Two years ago, a family at my church had a young daughter who started having seizures. They tried meds, but without success. While in despair, they were directed to a video, and from there to a complete change in diet for their daughter. She stopped having seizures! And has been seizure-free ever since. Just this year they’ve weaned her off the diet, and she is doing well. Here’s a link to the blog that her mom started, specifically to spread the word about the ketogenic diet: http://ketojoy.com/.

    Susan

    • I checked out the link you shared, Susan, and Autumn’s story is amazing. Tarica is in the care of a skilled epilepsy team at Children’s Hospital of Pittsburgh, and at this point, her doctors are recommending we not use the Ketogenic diet. Because of some specifics of her case, as well as the genetics involved, they believe surgery to be her best option. But it is encouraging to read of children who become seizure-free, no matter how it happens, so thank you for sharing. I’m praying we have a seizure-free story someday.

      • I’m praying you do, too! If you ever come to a point where you’d like more information on the ketogenic diet, I KNOW Ann (Autumn’s mom) would be happy to talk to you. I’m not sure if she has her email address on her website, but I could put you in touch.

        Susan

        • Okay, thanks. I hope I don’t ever have to take you up on your offer, because that means everything else has failed, but if we get to that point, I will remember this.

          • Hi, Stephanie,
            This is Ann – Autumn’s mom from the ketojoy. My heart goes out to you – I remember having my heart ripped out as I watched seizure after seizure ravage Autumn. We were also told that brain surgery was a possible option for Autumn, and that the diet was not always successful for seizures like Autumn. You know your situation better than I do, and I certainly can’t claim that the diet would work for you. However, remember that you could try the diet – you would probably know within a few weeks whether it was helping or not – and that might direct your next step. If you watch Jim Abrahams story with his son Charlie, they did the meds, then brain surgery and still had seizures. After 3 days on the diet, his seizures stopped. Again, I am not trying to convince you to do one thing or another – you know your situation the best – I just wanted to give you some more information – something I lacked when I went through one of the darkest times of my life. I will be praying for wisdom, peace and healing for your sweet little girl.

          • Thank you, Ann, for your concern and prayers, for taking the time to get in touch with me. I won’t detail all the specifics for why the doctors don’t recommend the diet for Tarica, but I can share one big detail on our end that makes me reluctant to try the diet. However, it’s too long to go into here, so look for a post in the future called “Did God Pick the Wrong Daughter?” I apologize for appearing to be a drowning man who refuses a life preserver, but after I explain, maybe it will make more sense. Thanks again for coming here.

  8. Stephanie, I did not realize what you’re going through. My heart aches for you. You will definitely be in our prayers. After I read this, and watched our almost-four year old daughter running around, I felt ashamed of all my complaining and, yes, whining about life being unfair. God bless you abundantly in whatever lies ahead.

    • Ah, but not so long ago, it was you in our prayers. There is grace enough for what life brings, as I’m sure you know, and there is more grace waiting for us out in Pittsburgh. (I know that in my head; it’s my heart that hesitates.) Thank you for your prayers.

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  10. Sheila J Petre sent me your story and then I read about your blog on Shari’s. You’ve been in my thoughts and prayers and I’m glad to have this blog to keep me up-to-date.

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