Well, That’s Surprising News

It’ll be two years in August since Lola showed her first sign of a clinical seizure — at least we thought it was a seizure. We had just left the dentist’s office and Lola was still recovering from the trauma of the appointment. I noticed her exhibiting some very strange behavior through my rear-view mirror. She hadn’t had a seizure in a couple of years, but like any parent of a child with epilepsy, I was always prepared for when that seizure-free streak could end. I pulled over and immediately began to videotape the episode which you will see below. I sent it on to Lola’s neurologist and while she wasn’t fully convinced it was a seizure, rather than having Lola endure yet another EEG, we put her...
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Here’s Why I Hate You, Seizures

I feel your presence. I know when you are lurking in the background. You are waiting for your opportunity. You wait until a moment when her body is vulnerable, when she is tired, when she is ready to let the world fall at the wayside as she drifts off to sleep. You have her all figured out and yet we know little about you. Except we know when you are coming. Your aura shows itself in two obvious ways. Some days you seem like you are trying so hard to breakthrough that she is literally coming unglued by the tiniest hint of your existence. She is hard to calm. She screams. She hits herself out of frustration. Her behaviors make her father and me prepare. We are extra...
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Holiday Happiness

Creating a memorable Christmas takes a lot of work. With each Christmas that comes and goes, it seems even more work goes into making the holiday magical, but in all honesty, I love each and every minute of it. With each passing Christmas comes new memories created with traditions that Rob and I are putting into place. As I sit here looking through pictures from the last month, I’m reminded just how special we try to make it for our children. And part of me can’t help but wonder if we aren’t making it special for ourselves as well. Perhaps we are trying to re-create a feeling we miss from our own childhoods. I’ll probably say it year after year, but this Christmas was my favorite thus far...
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Right Where She’s Supposed To Be

It’s been over three weeks since Lola started school and based on the lack of posts on this blog — well let that be an indication as to how busy our family is these days. We purposefully chose not to talk about school at length over the summer as Lola doesn’t quite grasp the concept of taking a summer break. But a couple of weeks before school was scheduled to begin we started to repeat trigger words like bus, school, Mrs. Tubbs, Melissa and backpack. We wanted to help refresh Lola’s memory of school and you could see the wheels turning in her head as we began to use the words more frequently. Since Lola goes to the Indiana School for the Blind and Visually Impaired (ISBVI), Registration...
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Saying Goodbye to Summer

Truth: I have 1020 photos and 52 videos saved on my iPhone. I have photos dating back to the day Sebastian was born, the day he stood up on his own, the day he took his first steps, and everything in between. Most of the videos are of Lola and her quest to walk independently. Each one brings me right back to the moment and I can feel the pride in my voice over and over again. I have all of the photos and videos saved on our computer and countless other places because I have this incessant fear of losing them. And even though I know I could easily find them all, I still save them on my phone. I can’t explain why because I’m not quite...
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