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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Comfort, Silence and A Lot of Sleep

Last weekend Rob and I did something we’ve never done before; we left our kids with my parents and we went away for a couple of nights. This may not seem like a big deal to most people, but it was momentous for us. And to be honest, it was a much needed and well-deserved trip. Now we didn’t trek across the rain forest in Costa Rica nor did we stroll down beautiful Panamanian beaches like we did in our pre-kids life together, but we managed to sneak away to Cincinnati which, to us, felt like quite a retreat. Rob and I are super parents. All right, all right — we get that all parents will say they’re super parents. So maybe we are just mediocre, but we’re...
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Right Where She’s Supposed To Be

It’s been over three weeks since Lola started school and based on the lack of posts on this blog — well let that be an indication as to how busy our family is these days. We purposefully chose not to talk about school at length over the summer as Lola doesn’t quite grasp the concept of taking a summer break. But a couple of weeks before school was scheduled to begin we started to repeat trigger words like bus, school, Mrs. Tubbs, Melissa and backpack. We wanted to help refresh Lola’s memory of school and you could see the wheels turning in her head as we began to use the words more frequently. Since Lola goes to the Indiana School for the Blind and Visually Impaired (ISBVI), Registration...
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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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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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