Grateful For This New Normal

“Since these episodes aren’t seizures, that means Lola hasn’t had a clinical seizure since she was a baby,” I said to my husband last night. He agreed and we both sat silent for a minute. Just let that sink in. No clinical seizures in more than five years. How incredibly lucky we are to be able to say those very words. We say clinical meaning seizures that are actually visible. A past EEG showed her to be having subclinical seizures as she was sleeping, but the last two EEGs did not detect those subclinicals. What is most fascinating is that we have no idea what a clinical seizure would even look like, if Lola were to have one. The type of seizures she had as a baby were...
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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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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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Is Our Marriage Different Because We Have a Child With Special Needs?

I’ve read blog posts about how the dynamics of a marriage change when you have a special needs child and it made me wonder: Is the marriage between Rob and me any different because we have a child with special needs? As you can see from the bio on my website, Rob and I fell in love fast. As he wrote, “It was quick. It was breathless.” And that’s the absolute truth. We knew we were committed to one another before we even knew each other’s quirks, habits or deep dark secrets. People often told us we would have beautiful babies and in my heart, I believed that to be true. And they were right–we brought two spectacular human beings into this world. Our daughter, Lola, who happens...
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Sibling Rivalry is Driving Mom Crazy

Can I be honest with you? Yesterday may have been one of my worst days as a mom ever. Yep. Ever. What is it that makes some days tolerable and other days quite the opposite — dare I say abhorrent? But yesterday was just one of those days where I could do no right as a mom. Sebastian could have been a third walking leg as he never once let me go. Lola was upset that Sebastian was attached to me. Her inability to verbalize her unhappiness made her throw even louder tantrums. Her tantrums made Sebastian scream even louder. Those screams made me want to scream, but instead all I could do was just sob and pray that the day would end soon. I’m thankful I have...
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