Tag Archives: seizures

My Guilty Secret (and Great Struggle)

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I have written little of seizures lately.

This is because I’ve been trying not to think of them.

Here’s what I’m trying not to think about: We’ve seen no seizures since Tarica came home from the hospital.

Before you break out the party hats, let me tell you this is the worst possible timing.

Back in November, Tarica was seizing three to seven times a day. The seizures swallowed her life and vitality with the same ravenous appetite displayed by the wolves that lived under my bed when I was six. Brain surgery is a drastic measure, but we agreed to move ahead, bolstered by the continual seizing. She could not live like this.

The seizures continued, and with each one, I felt reassured that we were doing the right thing. When the seizures slowed down around the beginning of the year, I began questioning the wisdom of brain surgery, the wisdom of our choice. Mid-January, Tarica had a severe seizure that felt like God’s answer to my questions.

Yes, brain surgery was better than this guarded half-life she lived.

In the weeks prior to her February hospital stay, the seizures quit. My struggle began again.

But she seized at the hospital as if she were on a schedule, and the tests went well, and God was right there in room EP4, and my heart did not fear. Underneath my surface questions, I had such brave, blind faith that Tarica would qualify for brain surgery. We would agree to do the surgery, it would be successful, and we would shut—no, slam!—the door on epilepsy and live seizure-free ever after. I had the story already half-written in my head.

We came home. Tarica was back on her meds, and we waited for the testing results, waited also for the seizures, for something to happen.

Nothing. She has not seized.

And God has never felt so far away.

I told you the doctor called a few weeks ago, and during that conversation I realized Tarica might not ever be healed. I didn’t tell you what she said that opened my eyes to this truth.

She said, “If Tarica isn’t seizing, I don’t recommend you do surgery. Brain surgery is not a preventive measure; it’s a curative measure when seizures cannot be otherwise controlled.”

But if her seizures are under control, shouldn’t I be rejoicing? Isn’t control what we want?

No, no, no. I want her cured. I want her healed. I want her to live without the fear of seizures hanging over her, because while the seizures are controlled right now, they could return at any moment. I want her off medication so she can be my sweet Tari again.

If her seizures can be controlled by medication, why then did God open the doors for Phase One to happen? Why did brain surgery seem like our destination if it wasn’t?

I had hoped and prayed for healing, but it’s worse, I tell you, to live with hope, because disappointment makes the heart sick. That’s not my thought; it’s God’s inspired words in Proverbs 13:12.

There are several possible reasons why she isn’t seizing:

1. She is mysteriously and miraculously healed.

2. The medication is working.

3. God is giving us a reprieve before the seizures return.

4. God is shutting the door on brain surgery.

I didn’t want to tell you about this, because it feels like I began telling a story and suddenly forgot the punchline. It feels like we began a journey and along the way forgot our destination.

Now what?

We have an appointment next month in which we will discuss at length the test results and their official recommendation on what to do. If she still isn’t seizing, I doubt they will recommend surgery. Perhaps God knows this to be a good thing, but to me it feels like a lost opportunity for healing. Perhaps God has something better for us, but it’s hard to see that through my tears.

I want her healed. I don’t know if I ever wanted something as badly as this. If I did, I can’t think of it.

We’ve been praying that God would make our decision clear. Maybe this is His answer.

It’s not the answer I wanted.

Whatever the answer is, I pray it will be the best one for our daughter.

Even if it hurts me.

What It Means to Choose Heaven

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In my last post, I wrote “I choose heaven over healing.”

Later, I thought maybe that statement could be misunderstand. I want to be sure I am clear.

In the phone call, the doctor didn’t give me any new information. She spoke frankly of the risks and likely odds we are facing and gave her opinion on a few things. She took the facts we know now and explained what it means from her perspective. It opened my eyes to reality.

But we have not yet made the decision on brain surgery. That will most likely happen sometime in May, after we receive more specific details on the testing.

It won’t be an easy choice to make, and my last post was an outpouring of my floundering heart. All this time, I’ve been convinced that surely God will heal Tarica. He still might. We may go ahead with surgery, and she may become seizure-free.

But we might feel God’s leading to decline surgery, or surgery may not heal her—and I finally realized this. Yes, it will hurt deeply (hence the shattered-heart line—forgive my drama), but it’s not as tragic as I think it is. God can redeem our pain and turn it into good.

Ultimately, heaven is more important than a seizure-free life. Eternity is more important than time. Our destiny is more important than our children having perfect lives.

This is an unavoidable truth, but it hurts me, because I want the best for my children.

But so does God.

And heaven is the ultimate best.

Heaven is guaranteed healing, but healing doesn’t guarantee heaven.

I’m still praying for healing, but I’m also praying that if healing is not for Tarica, God will help us accept it and even grow from it. I’m praying that no matter the medical outcome, all of our family would find and follow God, although it may mean facing pain now to gain bliss later.

That’s why I choose heaven over healing.

P.S. But if God does heal her, you will have to search the world over to find a more thankful family.

In Search of the Happiest Ending

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I was writing a post titled “Why I Am Not a Food Blogger” when the phone rang.

It was Tarica’s doctor, and we talked about brain surgery.

I hung up, all my laughter gone.

Call me blind, call me naive, call me a towering monument of faith, but for the first time, I realized that our epilepsy story might not have a happy ending.

I’ve shared maybes and what ifs and questions and fears, but always, rock-solid in the back of my mind, I believed everything would come out right in the end. I’ve prayed “Thy will be done,” convinced that His will meant a seizure-free daughter.

But what if she will always have seizures?

I’m sure you thought of this possibility, from a detached distance, with the advantage of having the facts without the emotions. I’ve even said it is a possibility, said she might not ever be seizure-free, but I didn’t feel it as I did this morning, as a blow to my mother-heart.

She may never be healed this side of Glory.

I do not know if I can bear the thought.

* * *

I heard a story recently of a boy whose parents asked God to take their son Home while he was young if he would grow up to defy God when he was older. The boy died in a freak accident sometime after that. All his peers grew up and rejected God. The father professed that he never regretted his prayer.

That story hit me hard. We have three children in heaven by miscarriage, and it’s my greatest prayer that the rest of our family would someday join them. I have prayed, in a more innocent past, wincing slightly, “whatever it takes, God.”

What if it takes seizures?

What if seizures will make the difference between heaven and hell for our daughter? For our other children? For…for me?

After hearing the story of that boy, I had begun to pray, “God, if seizures help my daughter get to heaven, then help us to accept them with grace.”

But I was still convinced that God would heal her. And not just no-seizures-while-on-medication healed. I meant healed healed, as in no more seizures ever and no more medication. Ever. I hate what drugs do to her.

This is not too much to expect from a God who can do anything.

But what if He doesn’t do this?

* * *

Again and again, God has worked good in my life through hardship. Without pain, I am crusty and independent and proud. Pain turns me to God, and God turns pain to good.

What if living with this particular pain will keep us soft toward God and compassionate toward others?

It could. It might. It has.

To those of you who yearn every day for the child(ren) beyond your reach, this might sound unthinkable, but it was easier for me to grieve a miscarriage that it is to imagine my daughter living with epilepsy till death do them part. Miscarriage was only my pain, softened by the knowledge that my child is safe in Jesus’ arms. It hurts more to watch my children suffer than it does to miss them because they are with Jesus.

(And if my words hurt you, I am sorry. I’m not belittling your pain. If you’ve read the book I wrote on miscarriage, you know I know how great and terrible that grief is. Those of you who have emailed me to share your stories are daily in my prayers. I wish I could take away your pain, but I trust that God can also turn it into good.)

I hate the thought that my children need to suffer, but what’s been good for me will surely be good for them. God can do this for my children—turn their pain into good. I know this, but it feels a little like those times when the children pile into the wagon and fly down the lane.

I don’t want to watch. I don’t want to see them get hurt.

What if God knows we will be better off with seizures than without them?

Achieving seizure freedom has always been the happy ending I envisioned for us. But if that freedom would come at the expense of the happiest ending ever, then no, I do not want it.

I choose heaven over healing.

And it shatters my mother-heart.

How To Be Not Bitter

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“How do you keep from being bitter?” she asked, leaning on my kitchen counter.

This was no idle question. The woman standing in my kitchen was living a life far different from her girlish dreams. This I know, even though she has not told me. Who dreams of being a mother to a little girl with seizures? Neither of us had. Both of us were.

She and I could count our time together in mere hours, but it felt as if we had known each other for years. Our lives ran on parallel tracks in areas far deeper than the breezy connections of new friendships. On the surface, we had little in common—she is vivacious and impulsive; I am reserved and deliberate. But underneath the inconsequentials, we share two passions: the jagged-edged love for a daughter with seizures and a consoling love for our art. She writes stories in watercolor, and I paint canvases with words.

No, this was not an idle question.

When I stared down into the kettle and said nothing, she started backpedaling. “Maybe that’s too personal—”

I broke in. “No, no, it’s not. I like asking personal questions, so why would I mind answering them? It’s just that I’ve been thinking about this very thing lately.” I put down the spoon and leaned against the counter, unconsciously mimicking her pose. “Last summer, after the seizures returned, I struggled with some anger and resentfulness toward God. I don’t know if I was bitter exactly, but I was headed there.”

I stopped, aware that I was rambling, but she didn’t seem to mind, so I went on. “There have been other times in my life when I felt bitterness. The miscarriages. There was a huge property ordeal involving a right-of-way that dragged on for over two years after we moved here. And other things, like misunderstandings and injustice and good people who mean well but blindly hurt others.”

She nodded. Yes. She knew. We all have these stories.

“The turning point for me,” I said, “has always been when I started asking myself ‘What can I learn from this?’ When I began to see a situation as something that could make me a better person, it somehow took the bitterness out of it.”

* * *

I’ve come to recognize it by now, after several years of feeling the shift happen inside me each time I move from anger/pain/frustration to teachableness. I stop asking God “Why?” and start asking “What?”

What lesson do You have for me in this?

What am I forgetting that You want me to remember?

What can I learn?

What should I do with this lesson?

When pain becomes something that helps me grow, the bitterness in it fades. And eventually, the pain even becomes—dare I say it?—sweet.

Not at first. It takes time. It takes trust. It takes surrender. Over and over again.

* * *

“You know what I find the hardest to accept?” I asked my new friend. “It’s the things done by other people. With miscarriage and epilepsy, I could more easily trust that God could make good come from it, including in me. But when people hurt me or those I love, it’s hard to accept that God allows such bad things to happen. There is no redemption in the evil we do to each other. Only God can redeem that kind of pain.”

But when He redeems, the waters of Mara turn sweet.

* * *

Not long ago, my friend emailed me a copy of a painting she had just finished, a piece of representational art she titled “You Will Never Walk Alone.”

What I say in words, she says in watercolor, only better. Isn’t a picture worth a thousand words? With her permission, I share it with you.

You Will Never Walk Alone

She knows about bitter and sweet.

She knows about redemption.

She knows.

And we all tell our stories in our own ways.

* * *

P.S. It’s been a little heavy and deep around here. Look for lighter fare next time, when I introduce you to the new member of our household, The Box.

When Love Is Not Enough

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A year ago today, we sat by Tarica’s bed at Children’s Hospital of Pittsburgh, waiting for the MRI results. We did not know what was wrong with her, and we prayed for strength to face the verdict.

Today, another set of parents sit by the bedside of another little girl in another hospital. Shianna had a severe seizure last night and was airlifted because she was unresponsive. I don’t want to think about the terror her parents felt. And her story strikes closely home: She is my cousin’s daughter.

After I heard the news, I put my head down on the table and cried one big gulping sob. But no more. Tears would not help. I sat up, wiped my eyes, and reached for the words.

This one is for Shianna, for all the little ones who fight battles bigger than they are, battles that break our hearts.

* * *

When they were small and sad, I held them until they smiled. When they fell in those first toddling steps, I scooped them up and kissed away the hurt.

Our world was little and safe and predictable. I doctored scrapes and colds, and I made oatmeal and promises, and we all lived as happily as if Ever After was now. I loved my children so strong it felt as if nothing could touch us.

But reality pricked holes into my cocoon of safety. There was the burn on Jenica’s face, scars she still wears. There was Tarica’s colic, and there was Micah’s repeated bronchiolitus/asthma attacks during his first year. There was the challenge of helping our daughters negotiate broadening social worlds and the difficulties found outside our sheltering walls.

My children faced problems I could not fix. I was helpless to counteract their pain, and it hurt. I wanted nothing more than to preserve our safe little world.

And then came—not a pinprick, but a slash, a tear, a gash through my world. Epilepsy took away my safety net, and I fell and fell and fell.

I could not love her enough to protect her, to heal her, to make promises, and it was a slash, a tear, a gash through my heart.

I think all mothers face this sooner or later. Some lose that safe cocoon on the day they find the unmistakable stamp of Down’s syndrome on their precious newborn’s face. Some lose their safety net in weeks spent in the NICU or in the wreckage of an accident or in the irrevocable words of a medical diagnosis. Social rejection. Academic failure. Marital conflict. Brutal words.

My love is not enough to keep my children safe.

What does a mother do when love is not enough?

She cries. She worries. She fears. She hugs them until they squirm in protest.

She alone is the mother of these children. No one else has loved them as she has, and who else feels this pain so deeply?

But if she is to be comforted, she also prays, because who else but God can comfort?

Lord, be for my children what I cannot.

And love—His love—is enough to bring us safely home.

* * *

P.S. I talked with Shianna’s aunt this morning, and it sounds like she is doing better. They suspect it was a febrile seizure.

No matter the diagnosis, it will be a long time before her parents forget the terror. I pray they will know God’s peace and comfort in the coming days.