Our Little Lamb and Epilepsy

I originally wrote this devotion about having a child with epilepsy for WELS Women's Ministry. It is part of the Hope Through Tears devotion series.  Read more encouraging devotions by women here on their website.  Thanks for joining me on Purple Day as I share our family's journey through epilepsy, and for keeping those living with epilepsy in your prayers. Purple Day

Being Joyful with our Little Lamb through Epilepsy

My husband and I have three dearly loved children, Jesus’ precious little lambs. Our sweet Oliver is the middle child. Oliver has epilepsy. On the day of his third birthday party, he had his first seizure, followed by several more over the next few weeks. We quickly had to adjust to neurology appointments at Children’s Hospital, EEGs, and anti-seizure medications. Oliver was diagnosed with generalized epilepsy. We have a lot of hope that he will outgrow it eventually.  We take it one day at a time.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34

The challenges that troubled us daily, outside of the seizures themselves, were the personality changes and behavioral issues. Oliver is a thoughtful sweetie. If given a treat, he insists on splitting it three ways with his big brother and little sister. Our little sweetheart was very unhappy for weeks, as he lived with seizures, auras, and adjusted to anti-seizure medications with behavioral side effects. When out running errands, or at church, it wasn’t unusual for him to have a meltdown. Sometimes he would cry loudly and say, “Yucky smell, yucky taste,” because he was having an aura, a warning that a seizure wasn’t far behind. I’m sensitive about how others might perceive my parenting skills, and on those days, often wished I could wear a shirt that said, “Give us a break, we’re living with epilepsy.”

Ambulatory EEG

We couldn’t always give ourselves a break, though. All three of our children still deserved patient guidance and loving discipline during such a stressful time, even Oliver. Inappropriate behavior quickly became habit, even if he was acting out because of medication or seizures. We have often felt overwhelmed by the parenting and medical decisions. My husband and I found strength, reassurance, and joy when remembering how our Good Shepherd loves this child even more than we do. Jesus also loves and leads us as parents.

He tends his flock like a shepherd:     He gathers the lambs in his arms and carries them close to his heart;     he gently leads those that have young.  Isaiah 40:11

One way he keeps our little ones and us close to his heart, leading us, is in his Word. He has lovingly given us many guiding passages. One that I find myself returning to frequently is in 1 Thessalonians.

Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:16-18

To a hurting or stressed-out parent, I realize this may sound like another to-do list. This to-do list could be a reminder of our shortcomings. Be joyful. Pray continually. Give thanks. Even in these circumstances? Especially when I’m hurting, I’m not always so joyful or thankful. I don’t want extra guilt about my anxious attitude piled on top of my uncertainty and worry, but going through this list changes my perspective. This is a different way of looking at my life.

What do I have to be joyful for? We have joy because of Jesus. He holds our Oliver, our little lamb and his, close to his heart (Isaiah 40:11). He loves us and our child so much, that he, our Good Shepherd, gave his life for us, and covered our every shortcoming. We have peace with our Father, and a home in heaven where we will live free from the pain of this world, free from worry, free from epilepsy.

“I am the good shepherd; I know my sheep and my sheep know me—just as the Father knows me and I know the Father—and I lay down my life for the sheep. John 10:14-15

Part of that joyful relationship with our Good Shepherd is prayer. To pray continually is to take advantage of our access to God and have an ongoing conversation with a friend who cares about these struggles.

What a friend we have in Jesus, All our sins and griefs to bear! What a privilege to carry Everything to God in prayer. CW 411

Because we are joyful, we can also be thankful. Jesus showers us with blessings, and surrounds us with what we need. Blessings of all sizes make difficult times more bearable. In our family, we can thank God for skilled neurologists near our home. We can thank him for a loving family, and a supportive congregation. We have a happy home, filled with best-buddy siblings for Oliver.

One small-sized gift I thank God for is Oliver’s beloved ragged stuffed dog, Pips, a constant companion in the ambulance, at blood draws, and in EEGs. Oliver is anxious about the blood pressure cuff, and the nurses have a mini cuff for Pips. Pips and Oliver are brave together, and I am more grateful for that stuffed dog than I would have ever imagined being thankful for a toy.

I’m now very thankful that Oliver hasn’t had any seizures in a while. We don’t know what’s ahead.  Seizures could start again, or perhaps he’s outgrown them. He depends on medication and lives with its side effects.

Some days it is hard to have a child with epilepsy, and others it isn’t so bad.  Every day, I am so proud of our family. I can rejoice in what we’ve been through (Romans 5). I’m proud to be the mother of a family living with epilepsy, because through it we have had the opportunity to guide our children and show them how to give thanks, pray, and be joyful through the reality of this hurting world. We’ve had real opportunities as a family to lean on Jesus, our Good Shepherd, looking at all of the ways he has blessed us. After all of this, one of the blessings for which I really love to thank God is a good, sweet, normal, boring, uneventful day in which to serve him.


Update: Since the writing of this original devotion, Oliver is still seizure free and has been weaned from seizure medication. We are incredibly grateful that God has blessed our family in this way. At the same time, we also know many children and adults continue to live with seizures. We keep them close to hearts, and in our prayers.

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