Tag Archives: Epilepsy

You are Not Alone: Hope for Parenting in Those Unexpected Moments

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Upon giving birth to my first child, I was determined to be “that mom”-the one whose children would never fall prey to the sneaky dangers surrounding them. The phrase “My kids would never do THAT” found a place in my mind.

What is “THAT” exactly?

Electrical outlets? Covered (nevermind the fact that I once found a way to stick my finger in one as a toddler). Cords to the blinds? Well, we don’t have any. Toxic substances? Locked away in the childproof cabinets that I can’t even open sometimes.  As a new parent, I scoured the lists for precautions to make sure my child would be safe.  Of course there were some things that I didn’t worry about because in my mind, “What kid would really do that?”

Like plastic grocery bags?  The ones that my child would never put over his head? Yet, in his state of natural human curiosity did it anyway?

Like toilet screw covers? Those small white caps that just happen to fit the size of a toddler’s mouth perfectly? In fact my daughter managed to fit one in her mouth (don’t go there) while I was in the bathroom getting ready to preach at church. As she looked up at me gagging, my instincts sprang into action. Fortunately, I noticed and quickly resolved the situation. And then it was on to leading worship an hour later.

Ahhh, the naivety of parenting. Actually, there is good reason for that.

We’ve never done it before.

A toaster comes with a manual. In fact, even a Happy Meal toy comes with one.  But parenting? Nope.

Sure there are books out there to help.  Social Media groups beckoning you to join their posse. Conversations with people who have “been there.”  But, ultimately, there is nothing to prepare you for the moment by moment process for raising a human-one whose DNA is unique from any other. Add in family history, genetics, personality traits, lifestyle….and it is a learning experiment.  We hope and pray for the best.

In a sense we all become “That Mom.”  Most of us truly want what’s best for our kids. We become schooled in how to keep them safe; trying to keep a balance between not being concerned enough and being accused of being a helicopter parent (I’m afraid of heights so that probably wouldn’t describe me).

And just when you think you have prevented catastrophes, some other strange quirk pops up and catches you off guard.

Prolapsed rectum? Yep. Experienced that.

Body suddenly covered in hives? That too.

How about Teen onset Epilepsy? Mental illness? Cholesteatomas (I had to look that up too) in the ears leading to chronic ear infections and destroyed ear bones? Triple yes.

What we learn as we parent is that we can set our eyes on being the most competent parents ever, yet we are not in total control. That demands perfect people or robots.

The beauty is that God has trusted us with a most humbling responsibility. We get to participate in it while resting in the assurance that no matter what happens these are God’s children (Psalm 139:13-14, Jeremiah 1:5).

Upon leaving the hospital with my firstborn, I remember thinking, “I really get to take him home?”

There is nothing that can fully prepare you for this journey.  And that’s O.K. Because this parenting thing isn’t all about us.  We are partners with their Creator; the One who also created us and knows us intimately.

We will make mistakes. Unexpected circumstances are a given. You are not alone.  In the words of a once popular song from a teen Disney Musical, “We’re all in this together.”

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How I Found Peace Living in the “Not Yet.”

Sometimes, life leaves your brain full and your mouth empty.

A season of life two years ago encompassed one of those times for me. The thing is-these seasons don’t just end with a nice and tidy resolution. They don’t leave us with an instant epiphany of profound theological insight. Rather, we are left with a reminder-:spiritual, physical, emotional- that we are humans wrestling with the realities of living in a place of in-between.

It is not yet Heaven.

The days of December 2013 quickly filled up with preparations for Christmas as well as doctor’s appointments. My eldest son became increasingly ill. A periodic problem with an upset stomach evolved into a daily issue. Watching your child feeling sick packs a punch to the stomach and the heart. The immediate desire is to fix it. Yet, beginning in October, we sought an answer from many physicians and no one could fix it. How can that happen? We live near Chicago; a mecca of renowned and state-of-the art medical centers. A gold mine of wisdom on the complexities of the human body. Yet, each visit to a different specialist yielded more questions. We just wanted answers.

Emergency room doctors ruled out some things But nothing made him better. Daily, he made the trek to school with virtually nothing in his stomach except a bit of protein shake. Sometimes, he couldn’t gather the stamina to make it to school. My husband and I worried. The school pressured. The bills mounted.

We prayed. Friends prayed. Strangers prayed. But there were no answers.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6 (NIV).

Embracing the peace of Christ in the midst of uncertainty challenged me.

Finally, after many tests and procedures, a diagnosis was reached. Whew!  Finally a name and a course of treatment. Finally, an answer! Medicine would bring healing and resolve the problem.

I grabbed hold of the answer and felt a sense of relief; control; no uncertainty.

How easy is it to acknowledge the “peace that passes all understanding” when circumstances line up according to our expectations?

But would that peace permeate if the circumstances change? The events of the next day confronted me with that question.

Following dinner, upon preparing to study for finals, he fell to the couch and began to seize. Never having witnessed a seizure, it was the most terrifying moment of my life. The limp look of his body; the lifeless look in his eyes, will remain etched in my mind for a long time. Those five minutes led me to a profound realization as my mind grasped to acknowledge the surreal reality spinning around me: there are many things I can control-but death may not be one of them.

Fortunately, he came out of the seizure, was quickly rushed to the hospital, and the scans came out clear. But, more questions arose...and yet no answers. In my frustration, I hesitated to let go of what I thought to be a resolution. I didn’t want to believe that our lives were once more catapulted into the abyss. “How do you embrace the peace that transcends all understanding when God’s movement does not align with Earthly expectation?

As we dealt with the uncertainty in his health, we attempted to proceed with the rhythms of life. That wrenching moment rewound in my mind in the midst of my days. Ambulance sounds caused shivers down my back. Yet, I attempted to let Jesus, not me, guard my heart.

The dark, frigid winter painted an appropriate backdrop to the events and feelings over those next several months. While we continued to hold on to the glimmer of light held out for us through scriptural promises, the realities of living in the “not yet” continued to speak into our lives.

How does one live in the truth of new life in the resurrection, yet, face the reality of destruction and death of the things of this world?

My heart and my mind bear the scars of living in a kingdom that is both now and not yet. But I am keenly aware that I am not the only one. In one way or another, all of us feel that paradox. Circumstances may differ. Our expectations and God’s answers may or may not merge. Yet, the testimony and scars of others bear witness to the peace that Christ offers, while living in a kingdom that unfolds toward completion.

It’s the peace that Jesus promised to his disciples, who had given up everything for him. “I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” John 16:33 (NLV).

Eventually, the winter season yielded to the brighter, warmer days of spring; not just meteorologically, but symbolically as well. My son’s health improved. I am aware that I am bound to encounter those seasons of restlessness again. They too are promises of Jesus. But He also imparts a peace that “transcends all understanding” as we navigate through them. 

 

Embracing Compassions for the Ride

I’ve heard many metaphors for life: seasons, ride, roller coaster. Each of those words gives a word picture to help us express and define how we experience day to day living.  Sometimes, only one metaphor aptly fits your given scenario.  As I reflect on the last nine or so months, riding a roller coaster best describes the sensation of breathtaking speed and long climbs of the events of daily life.  In a previous blog, I wrote about the image of riding a roller coaster and how it applied to  my life at the time.  I have always felt more comfortable in the front seat because that way I can see what’s ahead.

Not feeling in control is an area of challenge for me.

 

But sometimes, you  don’t get the front seat.  That fact was never more clear to me than this past year.

In October, my oldest son, Seth began having health concerns.  His symptoms did not seem worrisome at first.  As a mom, you always balance that “I don’t want to be paranoid” mentality with the “what if I’m ignoring something life-threatening” train of thought.  So we waited.  Sometimes he seemed better.  Sometimes he didn’t.  Several visits to doctors resulted in more confusion as to the root cause of his symptoms.   We heard the names of illnesses we can’t pronounce as well as being told that it’s all “in his head.”  Remedy after remedy tried….and failed.  More doctors, more time and energy spent troubleshooting; no answers.  As fall ended, and more school was missed, frustration grew. It invaded family life.  Siblings were feeling left out.  My ability to home school became confined by doctor’s appointments and my diverted attention. Seth was growing sicker and I couldn’t help him.

The ride was going fast, and I wanted off.

Finally, after mass amounts of blood work, and tests, there was a possible diagnosis: Reflux  At least there was a name.  And a bit of calm.

And then in December, on an ordinary December evening, following dinner, my husband called me into the living room as we watched in horror as Seth began seizing.  Not knowing what was happening,  my reality of not having complete control hit me hard.  What if he is dying?
Fortunately, he came out of the seizure after what seemed to be the longest 4 minutes of my life.  After being admitted to the hospital, all  tests came back normal.  What??  Apparently, it isn’t unheard of to have a seizure with no answers.

But one month later, he had another seizure. And two weeks later, one more.

Now, I felt like I was clearly in the back car.

I couldn’t see where this ride was going. And neither could my family-my fellow passengers.  As it would turn out, Seth would have two more seizures.  We now added a Neurologist to his list of doctors.  And more questions…with no answers.

With Seth getting sicker, his ability to attend school was nearly impossible.  I was attempting to home school Lena, communicate with Seth’s school, return homework, carve out time for my husband and other child.  My body longed for rest. fatigue prevailed. Congnitive functioning became difficult. Maintaining control over the situation gradually morphed into grasping for answers….and help. The mom in me wanted to fix it. But I couldn’t. I found myself in the most uncomfortable place for me on a roller coaster: in the back seat.

The backseat on the coaster does not allow the rider to see clearly what hill is coming up next. The ride may inch by for a while if the climb is lengthy. Or the climb is barely noticeable because the hill was so small. Therefore, preventing worked up fear for the drop on the other side.

In either case, being in the back seat position means I lose a sense of control.  There may be unexpected climbs or stomach churning drops ahead. I can’t see them.  But God, who is sovereign can. God, my Creator, who knows my fears, sees what’s ahead. And that is to whom I must look to rather than my own devices of resolution.

In the midst of the ride I was taking, new turns were around the corner: a family friend and my kids’ piano teacher died suddenly: young and full of life-leaving us all stunned. My husband’s beloved grandmother, an independent,  97 year old woman and light of the family and her community developed cancer and passed away within a month. One month later, Scott’s beloved aunt left this earth. And did I mention that somewhere in the midst of these twists, his company was bought out?  What would that mean for us? And him?

I clung to  Lamentations 3:22-24:

Because of the Lord’s great love we are not consumed,
    for his compassions never fail.
23 They are new every morning;
    great is your faithfulness.
24 I say to myself, “The Lord is my portion;
    therefore I will wait for him.”
Every. Single. Day. God’s compassions (or mercies) are new.
Those compassions breathe life into me when my physical being crumbles in exhaustion; when my mind feels that one more day of trying to stay emotionally stable seems impossible.
What scriptural truths get you through your wild rides?