MARCH 26 – WEAR PURPLE
A few weeks have gone by since my first blog about our little Jacky Boy, and a lot has happened in that time. We’d first like to thank everyone of our friends for their kind words and encouragement through all of this. It truly means a lot to us to know that we have so many great friends behind us. THANK YOU!!
One of the biggest wake up calls happened a few weeks back. Along with my sister, Kim, I took Jackson and Lilah to St.Thomas for the Railway City Art Crawl. Basically, you walk all through the downtown area stopping into local businesses and checking out local artists. It was a ton of fun for everyone but also gave Aunt Kim a first hand look at what Absence Seizures are all about. Because this was all so new to us, we hadn’t even told her about it yet. Sure enough, before we could even get out the door, Jack had his first seizure of the afternoon while putting his shoes on. I’ll never forget the puzzled look on her face while Jackson stared off into space. Then he wakes back up – “Where’d ya go buddy?” she says. I tell her I have lots to fill her in on. For the rest of that afternoon (about 3 hours), Jackson had another 8 or more that we saw. The scariest of which happened in the middle of the street while we were walking down the sidewalk. We were a few steps away when we noticed he wasn’t with us anymore. We looked back and there he was, standing alone in the middle of the street. Right then I knew we really had to start keeping a closer eye on him.
The following week we met with the Southwestern Ontario Epilepsy Support Centre. They were extremely friendly, supportive and knowledgeable. We were taught all about Absence Seizures. How they happen, why they happen, triggers that cause them, what we can do to help and so much more. It was a very overwhelming but well worth our time and I’m glad we went. They introduced us to support groups online and websites full of more information for us to check out. One of the biggest warnings we took away from that meeting was to keep a close eye on him in the bath. At almost 7 years old, Jackson is used to bathing or showering by himself. But imagine having a seizure while in the bath! He could slip and end up underwater. Quite the terrifying situation. This leads me to March Break, where we end up at the biggest type of bath tub – a indoor wave pool!!
We’ve had this getaway planned with my brothers and their families to Windsor’s Adventure Bay for a few months and we weren’t about to cancel it. However, we did make it a little more complicated. Ashley accepted a new job opportunity the week before we left and they wanted her start the same day we had planned to go. Knowing I had a great team of aunt’s and uncle’s waiting in Windsor willing to help out with my kids, I loaded up the car and embarked on a family vacation without Ashley – boy was that a weird feeling. Taking a 2-year-old and a 7-year-old (who was having 30 plus Absence Seizures a day), along with our 12-year-old, was not my first choice of a good time.
But it turned into a great couple of days – even though we all really missed Ashley. My family was a huge help and I couldn't have done it without them. From cuddling with a tired, whiny, and cold Lilah on the sidelines, to always being an arm’s length away from Jack, or racing him down the water slides, I can’t thank them enough. It wasn’t without a few nervous moments however. Jackson wanted to play in the splash pad area and and go down the slides. I let him climb up on his own while I never took my eyes off of him. I waited at the bottom of the slide, and sure enough, my fears came to fruition. He comes whipping around the slide to the small pool at the bottom, and he’s staring off, blinking his eyes. Just sitting there not moving. I race to him and jump in to grab him out, right on cue he snaps to and wants to go again. This kid is fearless. Throughout the evening I count 7 or 8 more at the water park, thankfully I was always right there with him.
If you’ve read this far, thank you! This was a long one, but it means you are interested in knowing more and following along with our story. We understand that we are very lucky. Despite his condition, it could be much worse. Unfortunately there are other kids out there, some we know quite well, some even go to class just down the hall from Jackson, that have been dealing with seizures much worse than Jack’s for years. I’m not writing this blog for you to feel sorry for us, I’m writing it to raise awareness. Before it happened to us first hand, I had never heard the words “Absence Seizure” and I’m sure many others haven’t either.
Something else I didn’t know is that March is Epilepsy Awareness Month – what great timing! In fact, tomorrow, March 26th is Epilepsy Awareness Day, in which everyone is encouraged to wear purple to show their support. Our family will be participating and I hope you all do the same.