Why I Blog Our Story

 

It seems like every blogger gets around to this post sooner or later, and each one has their own reasons for writing. Here are my personal reasons for why I write this blog.

I WRITE TO EXPRESS GRATITUDE.

When you’re diagnosed with a chronic illness, the things that you always knew were blessings in life, but never paused enough to appreciate, become amplified. Life moments get pumped back to be processed through your memory in stereo surround sound. There were so many times, on the heels of family diagnoses, I’d wake and just start tearful, running prayers of thanksgiving to the Lord over the smallest, but now-seen as biggest, things: cuddles with the kids, warm blankets, that couch we’d never successfully sold the year we’d tried, insurance coverage, electricity that hadn’t gone out in a storm, a friend’s intuitive kindness, a gorgeous view. Similarly, when we first returned from Mercy’s Make-A-Wish trip, my family was too overwhelmed by what we had experienced to convey it well. When people asked how things were going with Mercy’s health or what the Wish Trip had been like, I answered as truthfully as I could, in the short bursts of time allowed, about the semantics. But the depth of beauty life held, the depth of gratitude, that was impossible for me to convey correctly. Deeply beautiful things, the things which invoke my soul’s most ardent passions, those always bring tears. And, at the time, my Lord, husband and mother were the only ones with whom I could express those deep feelings and tears. Yes, I wrote thank you letters. Mercy wrote too. But, I remember journaling about the intangible, nearly inexpressible things which this entire journey had evoked. For me, it was easier to express these things in writing. Blogging became an outlet for me to publicly thank the people who serve the sick as doctors, nurses, therapists, teachers, administrators, wish granters, volunteers, family and friends. This blog started out as a way to thank the people who showed up in our messes to serve and heal. It was a way for me to publicly honor the Lord’s amazing provision and care of us through our story.

I WRITE TO EDUCATE.

When our daughter was first diagnosed (and I mean within seconds and hours of her diagnosis, while we were still in the ER) we were told that epilepsy could be easy to manage and would not cause significant fallout in her life. These comments came from doctors, nurses, and families of those who’d been diagnosed with epilepsy in the past. They knew people or had learned in medical school that epilepsy was manageable and normal lives could be lived. Halfway through my daughter’s first week long stay in the PICU with unrelenting seizures, I remember looking at one of the young, pediatric interns who had just delivered one of these medically-minimizing speeches, on the heels of yet another medication increase, and asked him quietly through tears, “Sir, do you have children? Have you ever watched your own child suffer like this?” Tears filled his eyes as he finally took a moment to look beyond his clinical, rote response into the humanity of our current situation. “No, ma’am, I don’t have children yet. [Pause. Then.] I understand what you’re saying. This is not easy.”

Fast forward nearly two years, and unfortunately those rote assurances have not yet applied in our child’s case. My daughter’s life has been anything but normal. She’s endured so much suffering that extends beyond the daily seizures themselves. In the beginning, trying to honor her pain and protect her privacy, we shared very little about what she was going through, her treatments, and what her days entailed. But, as the months rolled by, we began to realize that people did not have a clue what this disorder involved. They thought her days were relatively unaffected unless it was a day when a “big” (tonic clonic) seizure struck. Otherwise, they believed she was living her normal childhood.

And really, we couldn’t blame them. What else would people think? It was exactly what we’d thought about epilepsy prior to beginning this journey ourselves. If others in our lives didn’t know any better, it’s because they were only viewing snapshots of the suffering of others in their lives who’d had epilepsy, were pulling their information from those who’d outgrown epilepsy, were a part of the 1/3 of those diagnosed who find seizure control on the first or second medication they tried, or were just making general assumptions based on limited knowledge. Meanwhile, we were becoming part of the epilepsy population where seizure control is resistant to multiple drug interventions and life is altered dramatically. But since we weren’t sharing our story, how could we expect others to know epilepsy isn’t always transient or intermittent? We couldn’t. Sharing our story through a blog became a way to educate about the disorder of epilepsy itself, and the various ways it can impact a life. My blog became a forum for me to be real about the deep pains involved in this diagnosis for the sake of reaching those who wanted to understand better.

I WRITE TO EMPOWER MY DAUGHTER.

Today, my daughter is young. What she understands about her diagnosis is age-appropriate. But each day she learns more, and what she learns is that this disorder becomes more and more invasive and more and more limiting of the life she’s dreamed for herself. For instance, recently my daughter was talking about “when she drives” one day. She doesn’t yet know that the seizures she has will preclude her from training to drive, if we can’t stop them. Some day, she will know. And, that day will totally stink big time. There is a whole list of stuff like that…of hard days full of revelations I know are coming if the direction of her healing doesn’t change. Days I can’t stop from coming. One day, all those hard, enlightenment moments will have passed. She will be an adult. She will know every foreseeable loss this disorder has to dish out, though there will be many neither of us will be able to forsee. On that day, when she’s old enough, I want to this blog to be my gift to her: my remembrances of God’s grace in bearing her through years of pain as a downpayment on His promise to bear her through whatever her future may or may not hold. I write to empower her future with hope in Christ, faith in His love, and in His trustworthiness. I write to help her remember her past’s songs in her future nights. Ps 77:6.

I WRITE TO FIGHT, IN MY SMALL WAY, FOR CHANGE.

Epilepsy has been around since about 460 B.C. or longer, and while we now know what’s happening inside the brain during seizure activity, what neuronal channels are opening or closing incorrectly, and how different neurotransmitters affect changes in neuronal activity, 2500+ years later it’s still a ubiquitous disorder found in every country around the globe for which there is still no cure. In contrast, consider the first polio outbreak was around 1894 and less than 150 years later we now hear of limited outbreaks globally. I realize the disorders are completely different etiologically. My point is that with all the time which has passed, and with all the millions of people who still suffer and die from seizure disorders, science is woefully behind in finding a cure. I think this needs to change. I know that the only way to evoke that change is for people to really understand why epilepsy is so awful. Raising awareness through our story provides the humanity people need to relate enough to this disorder to be willing to invest their talents, time, effort and money into finding that cure. I won’t stay silent anymore because of a risk of personal privacy invasion when my child’s life, and the lives of 50 million other people globally, are at risk every second from seizure disorder complications.

I WRITE TO FIND AND RELATE TO OTHERS ON SIMILAR JOURNEYS.

One of the first things my husband and I learned on this epilepsy journey was how very lonely and isolating it is. Not just for us, but for our daughter too and for our son. It isn’t that we don’t have awesome friends and family. We do. It’s just that hearing another mom describe her child’s diagnosis experience, or reading about another father who knows what it’s like to time convulsions, or listening to anther person suffering with daily seizures describe how they cope is comforting in a much more specific way than other (also needed) comforts. Connecting with other parents and kids who are weathering the very same storms, comparing stories, successes, failures, hopes and dreams is like being wrapped inside a warm blanket while walking through a blizzard. I write to find and connect with our epilepsy and special needs parenting communities. Because we need each other. We need to hear we’re not alone in suffering the same types of painful life experiences. Some believe what those suffering need most is to focus only on the good in their lives. I believe that helps some. But, I know for so many others what we need most is non-sugar coated honesty about both the ups and the downs. We need forums that wrestle with the same deep struggles without glossy veneers. I write in an attempt to share that ‘realness’ with others who hurt.

I WRITE TO FULFILL MY OWN DREAMS.

It occurred to me, possibly too late in life, that writing is one of the ways I feel most alive, one of the areas in which I feel most free, one of the places where I feel fit snugly like a cog into this giant timepiece of life. Words help me process. Both my own words, and the written or spoken works of others. Blogging redeems some of my time from epilepsy to be where I am most at home: with deep thoughts and the words that express them.

I read once that if you want to write, you need to do it every day. I can’t make that happen. But, in one of those life twists that always take us off guard, epilepsy became the tool that forced my hand (literally) into devoting more time to my dream of learning to write routinely. And while this topic is simultaneously both comfortable (because of my familiarity in living it) and extremely uncomfortable (because it’s so personal, painful and exposes us to the scrutiny of others), I’m learning to lean into the discomfort and learn from it, praying God will use it for His glory and to help those who hurt.

I WRITE TO SHARE OUR FAITH AND HOPE.

I know what it is to watch a loved child suffer. I know what it is to feel trapped into a life scenario you literally hate, constrained by invisible chains dictating where, how, and when you’re able to move in the directions you’d like to. I know what it means to have to hourly lay down your life in service to another because of illness.

Seizures rule our family’s life. But, I know in other homes other things rule. Autism. Heart diseases. Cancer. Rare genetic disorders. Auto immune diseases. T1D. Bulimia and anorexia. Alzheimers and dementia. Paralysis and blindness. The list of illnesses and the families that bear them is endless. And sadly, those aren’t the only things that can rule in homes. Drug addictions and alcoholism. Pornography and adultery. Abuse and cruelty. These are the steel bars and jailers in other’s homes.

Not everyone is free to write about their painful imprisonment. That doesn’t make their pain nonexistent. I can’t personally reach or even relate to every individual’s suffering. But, what I can do is shout through my blog that I have reasons causing me to sing in my own personal jail cell. I don’t mean that literally (although, yes, sometimes, my son yells, “stop singing, mama!”). I mean my heart sings figuratively. I don’t mean that I feel happy about epilepsy or that suffering and painful circumstances make me want to bust out in song.

I mean that my faith sings. My faith is unchained by epilepsy. My faith sores free on wings like an eagle, out past the bars seizures have constructed around my home, past the padlocks it seeks to snap onto my daughter’s hopes and dreams, out into the clear, blue endless expanse of gloriously sunny breezes that lift my heart’s wings to heaven itself. Because while the reality is that epilepsy rules here in my home, my faith knows this is a temporary imprisonment. The bigger reality is that God rules over epilepsy. Over autism. Over alzheimers and unplanned pregnancies. Over death itself.

I blog to express the song of faith in my own personal suffering. But, it’s not a song I’ve written. The same song has been expressed in other ways by Christians throughout more horrendous life circumstances, since the dawn of salvation. Through being burned at the stake to being devoured by lions in the Roman amphitheaters, Christians have sung, shouted, prayed their faith aloud to those who would listen and come to understand.

When I say my faith in God’s goodness and faithfulness causes my heart to soar past our present circumstances, I don’t mean I am presuming God will deliver us from epilepsy. I ask Him to. But, He may not. Either way, I mean to sing faith through my blog when I can. Because faith isn’t just believing that He can deliver us from temporary pain, it’s knowing He’s already freed us from eternal suffering. So the end of my story, of my daughter’s story with epilepsy…whatever that ending may be…will not be THE end for us. It will just be the end of epilepsy’s temporary reign here, for this family, in this fleeting moment in time. Jesus already bought, sealed, and delivered our ultimate end game: an eternal home with Him, where we get to know Him, be changed to be like Him, and be done with our own sins and the effects of living in a fallen world. FOR-EV-AH.

That’s why Christians have sung at the stake, continued preaching when threatened with inescapable death, and prayed for their killers as the chopping axe has fallen. It’s why I’ll sing my faith in my blog about epilepsy. Everyone suffers. Everyone experiences loss. Everyone dies. Only One redeems all of that pain.

Christians have nothing to lose – except for the things we could never hold onto here in the first place – and God Himself to gain.

Who wouldn’t want to sing a song so freeing, eternal, and sweet?

3 thoughts on “Why I Blog Our Story

  1. You’re an amazing person for being able to share your experiences to help your daughter and others in similar situations. You will help many people with your words. Much love – speak766

    Like

  2. Thanks for sharing your story. As a fellow mom whose daughter also suffers from epilepsy it is comforting to know that we aren’t the only ones who go through the trails and tribulations of epilepsy

    I also wanted to say that our daughters met at epilepsy camp and my daughter Kaitlyn still talks about Mercy

    Like

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