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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Fitting in at CampAbility

Dear Easter Seals CampAbility Staff, From the moment we walked in the classroom, I knew our daughter would be in good hands. Before I could even muster up a “hello”, several of you introduced yourselves and acknowledged Lola. I tried to think of how you would know who she was because you had never met her, but the intake process for attending camp was so extensive that I’m sure you saw her picture. You probably knew her likes, her dislikes, her food preferences, and even her rare genetic condition, NR2F1, along with all its symptoms. I would guess that you knew she had limited speech, a complex visual impairment as well as epilepsy. I’m sure you were educated and prepared to give her the rescue medication if, God...
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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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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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