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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“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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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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If You Have a Child, Please Watch These Videos

Today I’m sitting here on the couch with Lola sprawled out across me. She’s home sick for the second day in a row due to the annual ‘flumageddon’ virus. She gets it every year and this year is clearly no different. While I’m sad she isn’t feeling good, I’m elated with one important aspect of her illness — she hasn’t had any seizures. For most epilepsy sufferers there are underlying causes that can trigger seizures. For Lola they are generally illness (fever or not), physical or cognitive developmental leaps, overexcitement, weight gain, and excessive tiredness. Yesterday marked one week since Lola has had a seizure. While I celebrate this one week seizure free milestone, I am especially hopeful the medicine increase is working because little lady is pretty...
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