To The Hairdresser Who Changed How People Saw My Child With Special Needs

Dear Hairdresser Who Sang To My Kid, I should know your name. I can’t believe I don’t. I was so busy trying to corral my two children, pay for their haircuts and maintain my sanity. I remembered to profusely thank you and I could have very well asked your name. In fact, I’m sure I did, but that important detail has faded. Unfortunately what I do remember is that people were staring at us prior to you calling my daughter, Lola, back. I remember my face feeling flush. I remember thinking the outing was a bad idea when Lola began to run in places she wasn’t supposed to, grabbed at things she shouldn’t have, and I remember the piercing scream she belted out when I tried to redirect...
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‘Progressing’

Try to do a blog post today. Most days I think it, but I rarely follow through. It’s not because I’m not dedicated to Say Hola Lola, it’s just that my free moments are few and far between these days. Anyone with young children knows this to be true. For those that would like continuous Lola updates, I’d recommend following Say Hola Lola on Facebook or on Instagram. It’s hard to believe Lola has completed her first full year of school (she started halfway through last year). On her final day of school, I sobbed like a baby throughout the entire day. I couldn’t articulate into words where the tears were coming from, I just knew I was proud. I watched the video of Lola walking to the...
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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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“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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