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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A Letter To My Mom

Dear Mom, Your month long visit has come and gone. I’m sitting here looking through photos from your stay and they remind me of all the little adventures we went on. It’s funny because most children would cringe with the thought of their mother staying at their house for a long period of time, but we welcome it…in fact, we look forward to it. When you come back, you just fit in again. Six months can go by between visits and yet, you just know how to fill in the gaps. At times I feel guilty because you help out so much (just the other morning I was yelling at you to stop doing the dishes), but I have to remember that you wouldn’t do anything you didn’t...
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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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“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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