Quease Fall, Don’t Go

“Outside, outside,” says Lola. It’s her new favorite word. It literally emerged from her vocabulary just this week. Up until a few days ago she’d say “bike” which ultimately meant she wanted to go outside. We’ve gotten really good at deciphering meanings behind her words. We used to have to pick up on her communication cues through all other avenues except for language, but she’s starting to use words more predominantly than actions. It’s been nothing short of astounding to witness. She has many more words in her back pocket that seem to appear out of nowhere. Some of them have quite complex meanings behind them and she’s starting to understand that they can be used in multiple scenarios. For example the word “off” — she uses it...
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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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“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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How an NHL Hockey Coach Helped Me Through a Tough Special Needs Parenting Moment

A couple of weeks ago, my husband, Rob and I were reading books with our kids, Lola and Sebastian. Sebastian is enthralled with books. He could read and reread the same book 50 times a day if we let him. He also likes puzzles, shape sorting, stacking blocks and other forms of play that require complex fine motors skills — fine motor skills Lola hasn’t quite mastered yet. On that Sunday, I sat and watched Lola try to like the book reading too. She soon moved on to the toy piggy bank. And I watched as she struggled to get the fake coin in the piggy bank. I could see the frustration as she tried repeatedly to get that darn coin to go in. She finally gave up...
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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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