The Chapter I Didn’t Want In my Story

Has the story of your life ever taken an unexpected turn and left you sitting in the dark, wondering what happened?

There are chapters in the story of each of our lives that we didn’t ask for, and if given a choice we would have said “No thank you,” for who in their right mind would say yes to trauma, suffering or disaster?

The chapter I didn’t want in my story is my family’s journey with Epilepsy.

Our journey began on a Saturday afternoon in November, 2006. It had been an ordinary day, filled with caring for Anderson, who was 3, and Maggie who had just turned 1. The colorful leaves and the crisp breeze drifting through my open windows made the walls of our home seem stifling. I bundled everyone up to go outside. It was a slow process. I was very pregnant with Ellen, waddling around getting everyone’s socks and shoes together.  Then Maggie’s seizure hit and suddenly I was in ambulance, sirens blaring, wondering what happened to my normal day.

Maggie continued to have seizures every few months, and we had no idea what was causing them. When Ellen was 18 months old, she began having seizures as well. Another chapter I didn’t want in my story.

My sweet girls in the middle of this unexpected journey.
My sweet girls in the middle of this unexpected journey.

After a million questions, hours of research, and keeping a detailed journal, we figured out that heat, internal or external, was the trigger for their seizures. We also found a medication combination that worked well. Ellen has been seizure free for 4 years, and Maggie has been seizure free for 3 years. They don’t remember ever having seizures. It’s such a twist of irony that the biggest trauma I’ve experienced thus far as a parent is non-existent to my children.

But I’m so glad.I don’t want them controlled by fear. Fear eats away at hope. And at 8 and 9 years old, there is a lot to be hopeful about.

I did not feel hopeful in those early years, filled with uncertainty. The triplets of destruction – anger, fear, and despair – had a hold on me for a while.

Though things have settled, our journey hits me full force at the beginning of each school year when I meet with the girls’ teachers. I hope we never have an episode at school, but if it does happen, I want the adults caring for my girls to be as prepared as possible. And I realize that I may also be preparing them to help another child down the road.

I still have days when I wish we weren’t on this journey. I have days when my mind goes too far into the what ifs. The fight for hope keeps me balanced on those days. The fight for hope keeps my focus on what I CAN do.

My goal through this journey has been to allow my children to have as normal a childhood as possible and still be safe. We have learned to modify our activities. We go to the beach in October instead of the heat of summer. We play outside in spring and fall as much as possible. The girls are aware of their limitations, but I never want them to be defined by their limitations.

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I want to travel this road well. Although they may not remember having seizures, one day my children may be right where I am, raising children who have seizures. I want to be able to offer them hope for their journey.

I don’t understand exactly how, but God has worked through this unwanted chapter in my life. Over the years, He has woven beauty into the sorrow, reaching places in my heart that would have otherwise gone untouched and unchanged.  He has used this journey to build my “fighting for hope” muscles. And I need those muscles to experience joy in the unwanted chapters of my life.

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The Hope We Were Made For And the Hope We Settle For

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Hope seems abstract, but we use, or refuse to use it, every day.

We study for tests in hopes of making a good grade. We make plans, hopeful that they will take place. We give up on a goal, convinced that we are a hopeless failure.

We involve hope in our lives because we were created by the God of hope. We were wired for hope – His hope – before our world became broken. As a result, our hearts long for things to be whole, the way they were meant to be.

 “Hope is the quiet, sometimes incessant call to dream for the future. The present moment is not enough to satisfy our souls completely. No matter how good or bad, the now leaves us hungering for more. And our insatiable quest for more is the root system of biblical hope.” (The Healing Path)

And though this hope is filled with longing,  it is steady, because it is rooted in the person and character of God.

When we see injustice, when we feel let down in relationships, Biblical hope presents us with two simultaneous truths. It assures us that this is not the way things were meant to be, and reassures us that it is still worth the effort to get as close as possible to the ideal.

“This type of hope enables us to walk bravely into the future, confident things can be better than they are today.” (The Healing Path)

The Reformation Study Bible describes hope in these words: “Hope is certain; it is a ‘sure and steadfast anchor of the soul.’ Hope calls us to be patient. Hope gives us strength and confidence for running the race, fighting the good fight, and enduring the tribulations that continue in this life.”

Can you hear the battle cry resounding out of that definition? Words like strength, confidence, and endurance – tools that we need to fight for hope in this broken world.

If this type of hope gives us this, why would we settle for anything less?

But we do. We settle for a type of hope that fits this description: the feeling that what is wanted can be had or that events will turn out for the best. (dictionary.com) We settle for a cross- your- fingers- and -hope-for-the -best scenario.

This hope hinges on circumstances, and when it fails it drops like lead, dragging us into emotional darkness. This hope is a counterfeit of the hope we were made for. It has similarities, but no lasting value.

“Hope cannot be killed, not ever, but it can be drugged numb and sleepy. Even then it will still function, but in a more material and simplistic manner akin to wishing to win the lottery or anticipating the purchase of a new car.” (The Healing Path)

There is no real, lasting hope without our real and lasting God. He created us to live this adventure called life using His definition of hope. His character is the basis of this hope, so to experience this hope we must know Him. We must know Him based on who He says He is, not based on what we’ve been told about Him or how we’ve defined Him.

We come face to face with Him in His Word. The pages of the Bible are filled with His messages, so that we can know who He is, and who we are in relation to Him.

I realize that the Bible is used by many to act either as a band aid (“Read this verse and get a better attitude”) or a truth stick to bash anyone who has an opposing view. If this has been your experience, dear friend, I am so sorry. God gave us the Bible to tenderly bring our hearts to Him. The Bible is not a weapon to use on each other. It is a weapon to use against darkness, but never to use against those searching to step out of the darkness into His light. In the pages of the Bible we discover that we are deeply loved by God.

In Zephaniah 3:17, God looks at us tenderly, singing songs of joy over us. This verse reminds me of the way we look at our children. When they are born we are overwhelmed with love for them. They have done nothing to deserve that love, and yet we lavish it on them. We look at them in wonder, we sing lullabies over them, and we want the very best for them. Our love for our children is a dim reflection of God’s lavish love for us.

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This is the hope we were made for. Hope that does not waver with circumstances but remains as steady as His love for us. This is hope worth fighting for.

Finding Hope In Your Story

A good story is powerful. A good story transports us into another place and draws us into the action. A good story brings the characters to life. We adore our favorite ones and want to know everything about them. We want to know their story – past and present. And once we know it, we understand the reasons behind choices they’ve made. Knowing their story gives us compassion for them, even when their choices have been foolish.

But how often do we look at our own story – past and present?

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Where does hope fit into your story? Are you stuck in circumstances that feel hopeless? Are you looking forward to the future, feeling hopeful? Or are things just too messed up to even whisper the word hope?

It can be difficult to find hope in certain parts of our stories.

I flat-out avoided certain parts of my story for years out of fear and shame. I wanted to separate myself from those parts of my story, and pretend that they didn’t exist.

Then I read The Healing Path by Dan B. Allender and my thoughts began to shift. I learned that our story (the good, bad AND ugly) shapes the person we are today. If we want to understand why we make the choices we do, or why we think in a certain way, knowing our story will help us understand that. And it just might help us have compassion on ourselves. It might help us understand why we make the same mistakes or why we seek out a certain kind of relationship again and again.

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As I read The Healing Path, I stopped straining to get away from my story and began leaning into it. I began to talk about my story with trustworthy friends. An amazing thing happened. No one ran from the room screaming, “What a freak!”. Not one person.  Instead, they shared parts of their stories with me. And I began to have hope. Hope that I wasn’t alone in my struggles. Hope that the future could be different from the past. Hope that even the dark parts of my story could be redeemed.

And that hope reached into other areas of my life.

Hope gives us the courage to lean into our the story of our life, search out the redeeming parts, and carry them into the future.

Will you look into the story of your life and “read” it with eyes of compassion?

There is no other story quite like yours, and it is a story worth knowing.

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I’m so glad you are here!

My hope is that this blog will be a place of hope and refreshment for all who visit.

I believe each one of us is wired for hope. Because the world around us is broken, we have to fight for hope, sometimes with every breath.

There is no script for much of life and at times our hope wavers on the edge of the chasm called despair. Our fight for hope in all areas of our lives takes great courage.

“Hope is by far one of the most dangerous commitments we make in life.”  Dan B. Allender

My hope is that this will be a community where we, as fighters for hope, can encourage and challenge each other to be brave and to keep fighting.