That was not on the schedual!

A bit of a background, in case you don’t already know, is that our son Tyson was diagnosed with Epilepsy September 2007 after having his first Grand Mal seizure on his first day of School, then 4 more in the 2 days that followed. He had extensive blood work and a CT scan to rule out anything more serious, then a EEG and an EKG to confirm the diagnosis. The months that followed held a few more EEG's and an MRI. During this time we discovered his allergy to latex. Have I mentioned how much I love God's humor? I'm not kidding... I think I would love to just 'hang out' with God, we'd have a lot of fun laughing at the ironies of life.

For about 8 months after the diagnosis, we struggled daily with Drop seizures and Myoclonic seizures (10-15 a day). A Drop Seizure ( Atonic) is when he suddenly, and without warning, looses all muscle tone. It's like he turns to jelly, but can fall quite hard. He has had drop attacks while on the stairs, resulting in quite the tumble down the stairs. He has taken drop attacks at the kitchen table, with his head hitting the table, hard. He has had a drop attack while drinking hot chocolate, scalding his hands and face. Drop attacks have caused his teeth to cut into his lips, they have caused countless bloody noses and bruises and general cuts and scrapes. In short, the drop attacks quickly became the most stressful part of his journey. Of course, he would still have some Tonic Clonic (grand mal) seizures that would last an average of 6 mins (yes we have Ativan on hand) followed by a 4-6hr loooong deep sleep. And just for good measure, he would throw in the occasional Absence.

Then came a magical day when hubby and I realized that Tyson hadn't had a seizure for a few days... then a week.. Then a MONTH! We FINALLY had the right mix of medicine! Trust me when I tell you that was a battle on it's own. There were days when I didn't even recognize him. He was a completely different child. There was hallucinating, uncontrollable compulsive behavior, self destructive behavior.. the list of side effects is long but thankfully we have a great Neurology team at McMaster Childrens Hospital. Tyson's Nurse is always just a phone call away witch is very comforting among so many uncertainties. After a lot of prayer, patience, and persistence we eventually got the right combination of meds to get his Epilepsy under control.


So where are we now? well. If you've ever been told that God takes hard times and uses them for good, believe it! While in the middle of the fog, I never would have believed that God was using the experience to transform me, but he did! I went from meek, mild mannered soft spoken shy girl to the lioness I should have always been! Just try and get in between me and one of my kids... Or chocolate! I've had to learn to fight and advocate for the sake of my kids, speak up, ask questions and not take no for an answer! The thought of these things would have made me throw up 5 years ago!

Tyson still has the occasional drop seizure and once in a while he'll have one of the others but it's manageable. We've learned to accept a last minute schedule change to accommodate the need to recover from a seizure. Some times we even enjoy the unscheduled down time!

We've moved on. Epliepsy is just part of who he is. No big deal. Now, we're on to tackling the next mountain... His ADHD!