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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School’s Out for Summer!

Another school year has come and gone. It feels like just yesterday we were getting Lola ready for her first day back to school and now here she is ready to move on to a pre-k/kindergarten class. That thought in itself is enough to send me into a blubbering pool of tears, but I’m so very proud of how far she’s come this year. She continues to make such progress each and every day and I can’t thank her support system at the Indiana School for the Blind and Visually Impaired (ISBVI) enough for all they’ve done to foster her development. She had Mrs. Tubbs again this year and now that’s all we hear at night, “Tubbs! Tubbs!” It’s really sweet because clearly Mrs. Tubbs has had an...
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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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Thanksgiving Perspective

I think being a mom of a child with exceptional needs has given me a unique perspective on being thankful. While I’m thankful for all of my blessings on this Thanksgiving, I find that I’m equally as thankful each and every day of the year. It’s nice to have an entire day to ponder the meaning behind gratitude and how it weaves itself into my daily existence because I am indeed very grateful. But as a mother, a wife and, more importantly, a woman, I try to honor the things I’m thankful for all year round…and these two are at the top of that list. Lola has taught me to appreciate in a different way and embrace all that life has to offer. Because I surround myself with...
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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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