image found here Today I’m thankful for Aidan’s seizures SAY WHAAAAT? because those are the only moments I can tick check him without him fussing. Gross, huh? This post is brought to you by If You Don’t Laugh Then You’ll Cry. Note to reader: This post has been updated to include some amazing photos. Thank-you Deb Cram.
There have been several articles written on what we, the parents of kids with special needs, wish you, the others, knew about our lives. These two articles cover a lot of ground that I firmly agree with. I want to add my own two cents, and I’m only speaking for myself. Please don’t say, “I don’t know how you do it” or “I just couldn’t do what you do.” Here’s the truth, you would rise...
So it’s been a tough few days with Aidan’s seizures. He had some doozies that resulted in him hitting his head pretty hard. We’ve also noticed a few variations of his typical seizures. We’ve tried meds in the past that haven’t worked. We also tried the Modified Atkins Diet. It’s based on the Ketogenic Diet and is a medical treatment. While both of these diets have been shown to reduce or control seizures, no one...
Meet Kelly, another guest writer in my Faces of Epilepsy series. When I first asked Kelly to share her story she said, “I don’t think it’s much of a story.” It is. Everyone’s journey looks different, which I why I’ve done this series. The more Faces of Epilepsy we see and the more we talk about the different ways Epilepsy presents itself, the more aware we are and the quicker the next person may be...
Here is another guest post in my Faces of Epilepsy series. A quick reminder as to how we can jump from Undiagnosed Children’s Day back to a series on Epilepsy – Aidan was born with an undiagnosed disability; last year he was diagnosed with Epilepsy; this is only a piece of the puzzle of Aidan as opposed to a complete descriptor of what is going on with him neurologically. Now onto Hillary. My sister was...
Well, Purple Day was great for me. It was so encouraging to hear stories of people wearing purple and having their own elevator speech ready. I love building community and feeling supported. I was also hopeful that people had the opportunity to read my blog and get a closer look inside this thing. I was glad to have the chance to get educated myself and share what I’ve learned. But at the end of the...
Remember Miles who got an accessible van last year? His mom Michelle tells us their story in this next installment of Faces of Epilepsy. Listen closely to how this story is driven by Epilepsy but has so many other things going on. I appreciate her raw honesty. My seven-year-old son Miles has epilepsy. Unfortunately he has a lot of health conditions and challenges which have resulted in his being profoundly disabled and medically fragile. But...
Epilepsy has made me ANGRY enough to want to scream and pull my hair out…. After all that Aidan has already been through, he has ONE MORE THING to battle? Really?? It all made me sorta CRAZY…….. No, really crazy, as in tall lady buying 4 inch black heeled boots she can’t walk in kinda crazy… And this is after a relatively short journey into Epilepsy world. It took us two years to get that...
We’re wearing purple tomorrow for the 50 million people affected by Epilepsy, one third of whom don’t respond to treatment. That’s too dang many. We’re wearing it for the people who have seizures that aren’t medically a big deal, but yeah, they’re a big deal; for the people whose fight against catastrophic Epilepsy is a fight for their very lives; and for the people whose lives were taken too soon by this beast. We’re wearing...
Now that you’ve absorbed many facts and tidbits about Epilepsy, and have met children and adults with different kinds of Epilepsy, are you ready for Purple Day on monday? Send me your picture in purple. We’d love see who’s part of our community.
Got a synaptic story you'd love to tell? I'd love to help you share it right here on FamilySynapse.com as a guest writer.
