The Truth About a Helpful Toddler

This is a bonus post, written to prove to you (and to me) that I will not be consumed by seizures. Epilepsy is part of my life, but it will not be my life, by the grace of God.

* * *

When my firstborn was 18 months old, she would help me in simple ways: throwing trash away, picking up toys, filling the washer with dirty clothes, and emptying the dryer into the laundry basket.

I was sure it was A Sign.

Her willingness to help was A Sign that I was a good and faithful and consistent mother. She would grow up to be cheerfully helpful because of the encouragement I was giving her. None of this complaining and whining about work, no, indeedy.

My third child is now nearly 18 months old, and he also likes to throw trash away and load the washer.

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But I know the truth this time. He hasn’t yet figured out that he is working.

Once he has, it doesn’t matter how good and faithful and consistent I am: There will be whining.

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.

Thank You

I am awed, amazed, astonished, appreciative—and that’s just the A adjectives—at the outpouring of grace I have witnessed in the last thirty-six hours. I read and thanked God for every one of your comments and assurances of prayers, even though I didn’t reply to them all.

Thank you. (It feels inadequate, but I mean it from the bottom of my heart.)

Some of you are friends; welcome here. Some of you are old friends; I hope to renew our acquaintance. Some of you are strangers; please don’t stay that way long. We are sisters on the road to Glory. Let us walk a few miles together and talk of what it means to grow and hurt and love and follow Christ.

Over the next few weeks, I’m planning on posting pieces of the epilepsy story, although there is no tidy summary at the end. This is a story we are still living.

With your prayers, you have made yourself a part of this story.

I can’t thank you enough.

The Connection Between Trust and Emotional Strength

Last Sunday, I was thunderstruck while sitting in church.

And here let me pause to say that thunderstruck is such an interesting word, especially because, in the literal sense, it cannot be true: Thunder cannot strike anyone. Figuratively, it means to be astonished or astounded.

It’s not unusual for me to be thunderstruck in church. Usually, it means that some great spiritual truth has confronted some great spiritual need in my life, and I see a problem in a new light—that is, the True Light.

Back to last Sunday. We were reading from Jeremiah 17. Verse 7 says, “Blessed is the man that trusteth in the LORD, and whose hope the LORD is.” In verse eight, it says that this man who trusts and hopes in the Lord is like a tree on a riverbank that does not fear the heat because its roots are well-watered. Even in a drought, this tree stays green and does not “cease from yielding fruit.”

I stopped. I reread that last phrase. Hmm. According to this verse, a person who trusts in the Lord will keep producing fruit in a time of hardship. I frowned as thunder rumbled in the distance.

Seven months ago, our four-year-old daughter had been diagnosed with epilepsy. Initially, we believed we could control the seizures with medication, but she was seizure-free for only two months. She was now on three medications and seizing multiple times a day.

The diagnosis had devastated me in ways I had not known possible. The grief, the pain, all the unknowns piled up on me, becoming a weight I staggered under. I was exhausted and overwhelmed all the time. I lost my joy and my interest in life, and my family suffered because of it.

In the drought, I ceased yielding fruit.

Which means—oh, I could not bear the thought—but I had to face the truth: If I had been truly trusting in the Lord, I would have produced fruit regardless of the season. The fruit I should have had was of the Spirit: love, joy, peace, long-suffering, gentleness, goodness, faith, meekness, and temperance. Had this fruit been in my life in the last seven months? Maybe a few shriveled apples clung to the lowest branches, but for the most part, the drought had stripped the boughs of their harvest.

But what about grief? Was it wrong to hurt when my daughter had seizures in public and I saw her shame? Did I sin when I was overwhelmed and joyless? Those feelings were real. What was I supposed to do with my pain? Ignore it? Pretend everything’s fine? I wasn’t choosing to feel exhausted; it was a byproduct of stress and grief.

But God’s Word said I should still bear fruit, regardless of hardship. How could this be possible? What could I have done differently to avoid the spiritual barrenness of the last seven months?

Still frowning, I read the next verse—and that’s when the thunder struck: “The heart is deceitful above all things, and desperately wicked: who can know it?”

God has not assembled His Words randomly. In a flash, I saw a connection between these verses.

The man who trusts in the Lord does not listen to his deceitful heart.

The heart—the place from which our emotions spring. My heart—that said, This is too much to bear. Instead of drawing from the river of Living Water, I had stood thirsty in a sandstorm of emotions.

God doesn’t ask His children to do the impossible—or if He does, He gives grace enough to accomplish it. What had I done wrong these last seven months?

I had not read my Bible enough. I had prayed. And prayed. And prayed. An ocean of words, a river of pain, I unleashed it all at God. But I had not stopped to let Him talk to me. This, I believe, is part of what God means when He said, “Be still, and know that I am God.” I needed to let Him speak to my heart through His Word.

I had not trusted God enough. I wanted to understand why, to see how, and to know where we were going, but my questions went unanswered. This caused my faith to waver—no, to crumble. My doubt said to God, “Explain why, and then I’ll trust you.” God is Almighty; He doesn’t have to explain.

I had expected too much of myself. The seizures had returned mid-July and escalated over the next few months, the worst of it occurring over our usual late-summer craziness, when food preservation and school preparation and before-it-gets-cold activities cram every waking minute. I don’t regret my full freezer and shelves of canned food, but it’s unrealistic of me to expect I can do all that without facing some consequences. Already wearied by the stress of epilepsy, I had little reserve and stamina. In a culture where food preservation is right up there with godliness, it’s hard to lower my expectations, but I should have.

Was I sinning? I don’t think so. However, if I stayed in that slump of joyless pain, refusing to partake of God’s goodness, then yes, I would be. Because we are frail children of dust, susceptible to grief and suffering, God does not judge us for hurting long and healing slowly. He may not be so merciful if we turn away from the strength He offers time and time again.

Even with this thunderbolt pinning me to the church bench, I still have much to learn. I don’t have all the answers yet and perhaps never will. This frightens me. Another test is coming up.

On Monday, we have an appointment with an epileptologist to talk about brain surgery.

* * *

For the beginning of our epilepsy story, go to A Sudden Onset, Part 1.

To read about our experience with Phase One of brain surgery, start with this post.

Seven Inventions Every Parent Needs

Parenting is not for sissies. Even on my bravest days, I feel inadequate for the job. So much to do, so little of me to go around.

It’s time for technology to step up and give parents a break. I’m not asking for a robot to cook breakfast and fold laundry. My needs are much simpler.

How about seven small inventions to make my job easier?

  1. Crayons that color only in coloring books
  2. Toilet paper that doesn’t unroll until legitimately needed
  3. Cereal boxes that don’t tip over
  4. Faucets that recognize fingerprints and turn on or off as programmed
  5. Toilet lids that lower and lock when anyone untrained trots into sight
  6. Diapers that never leak
  7. Toys that climb back in the toy box after being abandoned for ten minutes

Yes, he’s seventeen months old.

How’d you guess?

The Irony of Writing About Motherhood

You don’t have to look hard to find us, because we have boldly staked claims in our corner of the internet. We are stay-at-home moms who write about the life-changing task of motherhood.

We all have something to say and a sympathetic audience, so why not say it? Mothering can consume us, and it’s such a relief to reach out and connect with others in similar shoes. Ah, what comfort—we are not alone. And if we are able to help someone weather a rough patch or solve a problem with our words, so much the better.

But writing about motherhood contains an internal and inescapable irony. I see it in my own words about campfire memories and wildflower bouquets, when I write about spending time with my family, about seeing my children before they are grown and gone.

How did I write those words? I sat down at the computer and said “just wait, sweetie” and pecked at the keyboard and served hot dogs for supper.

To write about motherhood I must abandon the duties of which I write. I ignore the sticky floor and the stickier kitchen counter so I can pen missives about having proper priorities. I put off cleaning the outgrown clothes out of drawers so I can write about that day the snake crawled under my refrigerator.

This abandonment is not exclusive to writing: Sewing, scrapbooking, and cake decorating can demand equal commitment and time. But writing trips me up the most.

I wrestle with this contradiction, my responsibilities on one hand, the words on the other, and me caught in the middle. Or is it my children caught in the middle?

I hope not. I pray not.

Because that would be the greatest irony: to neglect my children so that I can write about motherhood.

Of Making Memories

I hunched my shoulders against the breeze and poked a stick into the snapping fire. Its glowing warmth chased the autumn twilight back into the trees. What was I doing out here, sitting by a campfire on a chilly night when disastrous kitchen counters and baskets of unfolded laundry waited for me inside? I should be in the house, getting my work done.

My husband threw a handful of leaves on the flames, and across the fire ring, Jen sputtered and moved out of the smoke. Beside me, Tari munched on the remains of her hot dog.

Our hot dog roast had been impromptu, suggested by the girls and seconded by their father. I had hastily assembled food and picnic supplies while they built a fire, and now here we were, having what could be our last picnic of the season. I didn’t want to pour cold water on their plans—I do enough of that already—but the summery heat of the day had given way to decidedly autumn temperatures. I wasn’t exactly sitting here having fun—or getting my work done.

Jen moved her chair for the umpteenth time, talking non-stop. Tari asked for a napkin around the last of her hot dog. I looked at their fire-lit faces and realized that maybe I wasn’t having fun, but they were. They will remember this night, this meal, above all the other meals in this week. Why? Because of a little inconvenient effort.

Memories are not made of convenience. I stared into the fire, chastened at my thought. How many memories do I miss making with my children because I judge the effort too inconvenient at the time? How many times do I say “No” when I should say “Yes, and I’m coming with you”?

My excuses were many: I am a busy mother. Tomorrow or next week would be a better time. I could love my children in ways other than doing things with them. I was a solitary creature and didn’t pursue group activities, even with those I love.

My face grew hot, but not from the fire.

My husband threw another piece of wood on the fire. “I thought you said you had things to do,” he said, brushing off his hands.

“I do, but the work can wait.” I met his eyes, knowing he would approve. “The memories are being made out here, and I want to be in them.”

Purple Treasure

You blew in the door

   on a leafy breeze,

      a purple treasure

in your fist.

“Mom, these are for you.

         Put them in water.

I think they’re thirsty.”

You tumbled back outside,

coattail flapping,

boots too large and clomping.

I grabbed

my own coat

to follow in your wake.

     Why toil

 in the confines

       of this

furnished cage?

I could be

outside,

with you,

braving the wind,

         scuffling in the leaves,

            finding gifts of indigo

by the woodland edge.

Time is running out.

   Soon,

there will no longer be

a little girl

   with purple treasure

in her fist.