Project Seizure-Freeedom

I have found that through the most difficult and painful times in my life is

when I have grown the most and God never left me.

He hasn't left you either.

Thursday, April 15, 2010

Grace Covers All

Yesterday marked the two-year anniversary of the loss of my pastor's brother Ricky. Ricky was killed in Iraq by a roadside bomb. And even though this article has nothing to do with seizures, autism, or epilepsy, it is pertinent, as many families struggle with loss who read this blog.

The loss could be one's own child who braved the seizure battle but whose life ended way too early. Or the pain of loss when a child doesn't develop "normally." Or the loss of the "perfect life" that we pictured but is now a labyrinth of doctor visits, medication, and frightening seizures as I wrote about in Good Morning, Beautiful. 

In the following link, our pastor shares from his heart about his loss and the fact that no matter what any of us are going through, God's grace covers all.  **Scroll down to the post that begins, "Two years ago everything changed."

Monday, April 12, 2010


Last week, I finished a webinar sponsored by Phoenix Children’s Hospital with Dr. Jeffrey Buchhalter, Pediatric Epileptologist, who was also our daughter’s neurologist. I talked about our journey through seizures, the ketogenic diet, and brain surgery. The main point I covered was advocacy. Along with that, I listed three important points that made all the difference and helped get our daughter better.


* Finding the right diagnosis is crucial.

* The best option for treating epilepsy is at a comprehensive epilepsy center.

* Understand the importance of working together with the neurologist and group of doctors. It should be a “team” effort.

Finding the right diagnosis for our daughter meant leaving behind all the “Well, we think … ” and “It could be … ” kind of comments and looking only at the facts. We also had to face the reality that doctors don’t necessarily have all the answers. In many cases of epilepsy, a cause is never found. And more importantly, when dealing with something as critical as epilepsy, the best place to diagnose, treat, and monitor a child with epilepsy is at a comprehensive epilepsy center where they have all the latest equipment, monitors, and expertise.

And here’s our part as parents or caregivers: we need to work together with the neurologist and team of doctors. It is not a one-way street for either party. The neurologist must rely on the parents to follow through with the prescribed treatment and communicate changes and/or concerns. Remember, Moms, Dads, Grandparents and Caregivers: you are the ones who know your child best. Help the doctor do his job by assisting him in that regard. Communicate what you feel, think, and see. And don’t underestimate that little thing called intuition—it is your God-given connection with your child. No one else has it but you.

To listen in to the recorded webinar on epilepsy and treatments with Paulette and Dr. Buchhalter click here: Webinar You will need to register, however Phoenix  Children's Hospital sponsers this webinar, and your information is kept private.

Friday, April 2, 2010

No more "Poor me"

There was a time during our journey to get our daughter better that I felt utterly and completely alone. So much so that one evening I screamed—yes screamed—toward the heavens, proclaiming my anger toward God for not healing our daughter. Afterward, slumped on the floor sobbing, I had what our pastor called a "pivotal circumstance," where God was doing something powerful in me.

In chapter six of Good Morning, Beautiful, this event is described in detail, but here the point I want to make is that something inside of me changed that day. The pimary thing was that I realized that we are not in this alone. Our Creator—the One who fearly and wonderful crafted us, according to Scripture—is here right now with you and me.

When I pulled myself together and stood on my feet that day, I felt empowered and renewed. I dropped the “poor me, why me” attitude and began to advocate for my child. Why? Because I realized that it wasn’t about me, and all I had to do was take the step of faith and He would be right there.

In Jolene Philo’s new book, A Different Dream for My Child, the same message is woven intricately through the stories of others who have already traveled the road of hearing the doctor say, “Something isn’t right.” Hearing the stories of others who share your experience can be a great comfort when you feel isolated by circumstances.

If you are the parent of a child with special needs or an illness that seems insurmountable, don't forget—you are not alone.