Terrorism of the Brain.
By
It’s an interesting thing to live what sometimes feels like a “parallel life”:
- With the role of being a leader in a church, you model faith and dependency in Jesus. You model joy, surrender, faithfulness – and a number of other attributes that a follower of Jesus should be and desires to be. And you do it genuinely.
- Yet at the same time every day you deal with…life. You deal with your “normal”, and it’s not all perfect, not all a bed of roses. I’m a husband. A dad. A homeowner. A dog owner. I mow my grass, wash the car, take out the trash…and I have a daughter with epilepsy. I have an amazing, beautiful daughter – with epilepsy.
Those last two words…those might be words that you can just simply read over. But they’re words that have profoundly shaped our reality. Yes, I’m a follower of Jesus, and my role in life is to serve as a pastor to others. But those two words? Those words have caused tears that can’t begin to be counted. Heartache that has no measure. Sleepless nights that can’t be numbered. There are days where pretty religious words, as kind as people intend to be, can feel hollow and empty. Faith doesn’t make sense some days. Resentment, frustration, bitterness – they rise up in broken hurt. Try as we might, as sincere as we want to be, as much as we want to live by faith – we have a daughter with epilepsy. This is something that we deal with every day. Every day. This is our reality, and it doesn’t go away. Some days we’re strong and know peace and joy, but some days this reality is tough to carry.
The emotions of this have been stirred up a little again due to a program that ran Sunday night on 60 minutes where Katie Couric did a piece on Epilepsy. David Axelrod referred to it so accurately when he called it “the terrorism of the brain: you don’t know when it will strike or where you’re going to be.”
Want a 12 minute glimpse into our 9 year journey? Watch this video:
My wife Leslee is an amazing mother to Lauren. After watching the program she was so moved, she needed to express herself. (I guess based on this email I did, too). She did so through the following email to some friends:
I just got done watching the episode that aired last night (Sunday) with Katie Couric interviewing The Axelrod’s (one of Obama’s Senior Advisors) about their daughter, ironically enough, named Lauren. I have a range of emotions that I’m feeling after watching this. The hospital rooms look all too familiar – the tests all too much our “normal”. Which is worse: actually viewing brain surgery knowing that is what your daughter endured (twice), or being so frustrated with the lack of funding/research that is going on to help stop this never-ending disease and bring her and others relief? It blows me away that there are more people with Epilepsy than cerebral palsy, MS, and Parkinson’s COMBINED – especially, considering all the awareness that is raised for each of these causes and the almost absent awareness (until recent day) about Epilepsy.
Although I’ve felt a range of emotions that are not so pretty, I must say that my heart is full of thankfulness more than anything else. Not because I’m some spiritual giant that has this all figured out. I’m looking at their Lauren (The Axelrods) who was effected by 20+ seizures/day that has caused her brain damage. Our Lauren has experienced that many seizures and more, yet God has somehow protected our precious girl. I can’t imagine not sharing everyday life with Lauren as we do – not living with her because she needs to live in a special home – and not seeing her be the person she is.
You share in our lives in some way, and in doing so, you have gotten small glimpses of Epilepsy. I’m asking that you take the time to watch this short video of the interview from last night – maybe you will learn something new about Epilepsy that you didn’t know before. Maybe, you’ll see our Lauren and all she’s endured in a different light . God has given us such an amazing girl. Such resilience.
So many of you tell me you pray for her daily. Although she is in a “good” season (still 2-3 seizures per week), please continue to pray for even better control and complete healing.
Complete healing is my prayer.
God bless them all.
Hi, Jeff. I saw this last Sunday and was thinking about your family as well. Lauren really has a special place in my heart and I wanted you to know that I continue to pray for her and your family. Thanks for bringing more light to this important fight!
April (springhill Day Camp director)
Praying for a quick recovery and good health.
My son has Down syndrome, so I know what special needs are from that respect. My mother and niece are also epileptic and my sister before her death from cancer this year also lived with seizures and the pain and turmoil that they bring. I’ve sat next to a baby who lay beside me having a seizure every few minutes and helped care for another who had many every hour. My heart goes out to your family as well as my feeble prayers, my hope is that God will somehow heal your daughter in some way soon one day. She is a beautiful child with a very endearing smile, although I have never spoken to her I’m sure she is a wonderful child. I am praying that God will bless her with his gift of healing soon, until then we will continue to believe and pray:)