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.

Friday, April 15, 2011

Quarter for a Clear View

It was intentional. The view finder (click here to see as shown on the blog page) was given much thought prior to being chosen as the face of this blog. At first glance it's a bit of a nostalgic, touristy kind of photo, but when I read the instructions on the view finder; the wording, "turn knob for a clear view" caught my attention, and in its own way, mirrors the message of empowerment contained in this blog.

Wouldn't it be great if when we first heard the words, "something isn't right" all we would have to do is pay a quarter, crank a knob, and viola! A manual with instructions would appear; with all of the treatment choices available. Our vision would be clear! We would have all the information to make informed decisions to best help our child or loved one. No more trying to unlock a door from the pile of a thousand keys, or trying to solve a puzzle with many of the pieces missing. Just drop a quarter--wouldn't that be something?

When Christina was diagnosed at seven months with epilepsy, we tried every anti-seizure drug and had every test. No answers as to why the seizures started and worse yet, we could not stop the seizures. An even greater tragedy however, that affects hundreds of thousands of children, is the lack of disclosure and lack of knowledge by those responsible for our children's medical care. In fact, when we stumbled upon another treatment option and inquired about it, the neurologist told us it was not safe for small children. We believed this. Who wouldn't? This was a neurologist, highly regarded in the community, and we trusted him.

Desperation set in when we almost lost our beautiful daughter after several more months of life-threatening seizures. With no treatment options left, and we took a leap of faith and traveled twelve hundred miles to Mayo Clinic. Within days of administering the diet there, the seizures stopped.

When the dust settled we realized that advocacy turned the tables for our child.

Dr. Jeffrey Buchhalter wrote in the forward of Good Morning, Beautiful: 
When a family confronts a medical care environment that fails to meet the needs of the child or parents, what can they do? As one who has devoted his professional life to the care of children with epilepsy, I can tell you that this occurs not out of lack of concern on the part of health care providers, but lack of expertise and familiarity. This book shares the journey of how one family learned what they could do. Its intent is to impact others' lives and inspire them to do the same as families must assume responsibility for care. 

In order for our vision to be clear, we must step up and take on the responsibility for our child or loved one's care. We are advocates. And even though it may seem overwhelming at times, you will get through it. If I can, anyone can. Mother Theresa once said, "I know God will not give me anything I can't handle. I just wish He didn't trust me so much."  Can't tell you how many times, I felt this same way, but  through it all, the greatest success was found in never giving up.

For a listing of facilities that provide second opinions and great ketogenic and autism care, click here.

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