“Mamma Said There’ll Be Days Like This”

Do you ever get the most obscure song stuck in your head and you’re not sure where it came from, why it’s there or when it will go away? Thanks to the podcast, Radiolab, I learned these songs are called earworms. A couple of weeks ago, Lola had a two day video EEG (VEEG) at Riley Hospital for Children. And the days leading up to the VEEG, I had the song, “Mamma Said There’ll Be Days Like This”, stuck in my head and on repeat. It lingered all day, every day. As I prepared breakfast for the kids, as I got ready for work, when I was at work, when I was driving, when I came home…you get the point. It was strange and annoying. I was frustrated...
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Epilepsy Awareness #purpleforlola

On March 26th, we participated in an epilepsy awareness effort called Purple Day. Purple Day began in 2008 when a girl named Cassidy Megan had an idea to wear purple in an effort to raise awareness about epilepsy. Megan had struggled with epilepsy herself which is why she wanted to educate people about epilepsy, she hoped to debunk epilepsy myths and she simply wanted to start a conversation about epilepsy. It started out as a grassroots movement, but quickly turned into an international day of epilepsy recognition. Since epilepsy affects Lola’s life, we wanted to participate and we were blown away by the overwhelming amount of support we received! Friends, family and strangers from all over the country (and in Costa Rica!) wore their purple to help spread...
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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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NR2F1

NR2F1. This combination of five letters and numbers meant absolutely nothing to me until a few weeks ago. Now those five letters and numbers have given us the answer to, “Why Lola?” They are the sole reason why the course of Lola’s life changed so drastically. They are the letters and numbers making up a long awaited diagnosis. When I first received the call from neurology informing me a diagnosis had been found, I was elated. I quickly called Rob, my mom, sent out texts, posted on Facebook and Instagram. I was ecstatic. We finally knew what exactly we were up against. The main symptoms were optic atrophy (Lola has CVI and small optic nerves) and intellectual disability (she is globally delayed). We would have to keep an...
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Where We’re at Today With Epilepsy

November is National Epilepsy Awareness Month and for as much as epilepsy has impacted our family, you’d think I could easily write about it. Yet I’m sitting here with a blank screen. I wouldn’t really call it writer’s block since I only show up on this blog every now and then. I think it’s because I try so hard to go on as if epilepsy isn’t part of our life. Like if I don’t acknowledge its presence that maybe it will simply go away. But that’s not fair to Lola and it’s not fair to the readers of this blog. So lets talk about epilepsy and what it means to my family. Today Lola is one month seizure free. This is exciting yet I’m hesitant to share this...
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