Lily & Christine

May 13, 2024

published on:

Newsworthy: Everyday Acts of Kindness.

A blog series highlighting the art of caregiving.

Photo narrative by: Christine Salerno

Every morning, I tell Lily that she is the sweetest, smartest, hardest working, bravest 5 year old I know. And once you hear a bit about her story, you’ll see why this is true.

You see, Lily has Rett Syndrome. Likely you’ve never heard of it. This is how it’s sometimes described: ‘imagine a girl with the symptoms of Parkinsons, Crohns Disease, Epilepsy, Severe Anxiety and Cerebral Palsy all in one little girl’. It’s pretty devastating. Most girls that have Rett never walk, never talk, need feeding tubes, have limited to no hand function and are on multiple medications to ease symptoms. Lily is described as being on the high functioning side of Rett Syndrome. Lily walks (somewhat unsteadily, but independently for the most part), has some words that come and go, has some hand function and can eat normally. She’s unable to learn sign language because her hands don’t function well, but thanks to technology, I’m able to communicate with this kiddo.

Though Rett Syndrome impacts almost EVERY aspect of her body, it hasn’t impacted her intellect. Up until recently it was believed that girls with Rett Syndrome were cognitively impaired, but – because of amazing technology – researchers, teachers and parents (though most parents already knew this) realized that these girls are smart. During the week, Lily goes to a special needs preschool where she has upwards of 4 therapy sessions a day. Once she gets home, she has another 2-4 sessions throughout the evening. I tell people that she’s busier than the CEO of the company I work for. This kid works hard. And she has to. If we don’t constantly keep at the skills she has, she will lose them. Lily needs 24/7 constant care and supervision. She can’t walk up and down stairs independently. Opening and closing doors isn’t possible.

On the weekends, I like to let Lily choose what to do, and I don’t push her too hard. Usually it means waking up early, having her morning smoothie, listening to music, going for a walk, and picking out flowers for our apartment.

Lily communicates with her eyes. It’s amazing how much she can get across with one glance. Even though Lily has Rett Syndrome, she is still a kid, a 5 year old kid. And she’s constantly pushing boundaries, seeing what she can get away with – like walking into the street.

Usually, I’ll make her lunch at home. She’s on a restrictive diet as girls with Rett have mal-absorbtion issues on top of GI issues so I do a LOT of cooking and prepping. Sometimes in the evening, I’ll take her out to dinner. She’s extremely social and likes to make her way around the restaurant, and introduce herself in her Lily way (which usually means walking up to the person, smiling into their face and then looking at the food on their plate). She needs help feeding herself. She can no longer hold a cup to drink from.

Music is really important to Lily. One of her occupational therapists (she has 4) described that as Lily doesn’t have an internal equilibrium, music acts as that equilibrium which soothes and centers her. We have a lot of fun throughout the day.

Having a child with special needs opens up a whole new world to a parent. Some of it is devastating. But some of it is magical. For me, and for Lily, we try to focus on the magical.

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More information about Rett Syndrome.

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