You Gotta Have Hope!

Hello! My name is Heather Jackson, warrior mom to Zaki (pronounced like sky). We are trying to turn the White House purple on March 26th for Purple Day. I want to talk to you about epilepsy... and hope!

Abstract from my journal:

On a crisp evening a little over 7 years ago, an intruder came into my home. He snuck in unannounced, as intruders infamously do, and began to steal from my family. At first it was not in an obious way. He didn't take the flat screen TV or my jewelry. He took something much more valuable! In September of 2003 I thought that I had securely fastened my doors and windows before having possibly the last peaceful night of sleep since. He came. Secretly. Every time he came he took a little bit of my little boy. He came. He came again. If I could have caught him, I would have put a serious hurt on him and pressed charges! With the amount of damage inflicted, he would have done hard time! But, I couldn't. And it's my son that's done the hard time. The thief was inconspicuous. He kept coming. And he started very slowly stealing away my little angel. He must have found us an easy target and hit full force.

He may have found you, or someone you love as an easy target too. You see this thief is fair. Anyone can develop epilepsy! It has no boundaries, it occurs in all ages, races, and social classes.

I have not so affectionately deemed him the beast. The beast comes and when he does, he leaves ruins behind. He comes whenever he wants.

Our story:

Epilepsy is a phenomenon that is mysteriously secret. There is a stigma that follows the diagnosis of epilepsy. that is why I am here. I am going to obliterate that stigma. And if you will let me, I'll give you a little hope along the way.

My son Zaki is 7 years old and has had seizures since he was 4 months old. Zaki has a rare condition known as Doose Syndrome. Well, at least that is the best fit for him. His onset was much earlier than most of his peers, and most children with his syndrome go into remission within 3 years. The thief stole his development, leaving him with many side effects, not only from the medications, but from the sheer number and force of the seizures. Oh... and autistic tendencies. The likelihood of the seizures leaving after 7 years are slim. (INSERT HOPE) Feeling's AREN'T FACTS! The fact is (1) I don't know if the seizures will stop, I can just as much assume they will as they won't! (2) Circumstances CAN NOT dictate my expectations!

16 anti-epileptic medications have failed him, and all of the alternatie treatments like chiropractic, acupuncture, herbs, supplements, cranial sacral therapy (the best so far), and the ketogenic diet, although not hurting him, have not made the thief leave! Zaki has had hundreds of thousands of seizures, of almost every type that you could imagine. Gosh, if I still stared at the boy and made little tick marks in my ledger, he'd be well over a million I am sure. The situation at many times has been dire. We didn't think he could or would make it. There were times we had to induce a coma like state with emergency drugs to stop the convulsing. So what do you do when it seems like all chances of this going away are gone? What do you do?

Well, I can tell you what I do. What I do is hang on to hope. And I help others do the same. I literally talk to parents all over the world every day whose child is suffering from epilepsy. I don't have the world's definition of hope. That is the desire for something. Get out your scrap paper and write this down, you will need it at some point. You have to add an extra ingredient to the desire, and that is EXPECTATION!! HOPE is the DESIRE + THE EXPECTATION.

I have talked to you a little about epilepsy and I have talked to you about HOPE. Now, what are you going to do?