Caroline Lily’s Journey: Girls having fun

Monday, November 5, 2012

Girls having fun

Caroline had a playdate with Daisy this past weekend. They dressed up in their costumes and watched Yo Gabba Gabba videos together. For me, the best part was watching Caroline having fun with Daisy without needing my hand-over-hand assistance.

My friend Sherry (Daisy's mom) is just so good at finding activities the kids can all enjoy together. She's also great at answering questions and always pointing out the similarities. Please click here for a great post Sherry wrote on how to talk to young children about Caroline.

When I watch scenarios like the one pictured below, my mind often races to the future. Will Caroline have friends in 5 years? In 10 years? I want to think "yes, of course she will!" But the truth is that I just don't know. I then have to stop myself from thinking too far ahead before I ruin a perfectly nice moment...and just focus on what's in front of me right now. More often than not, it works.

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About Caroline Lily

Caroline was born in January 2010. She is a bright and sweet little girl with a great sense of humor. She is a bit shy at first, but she loves to make new friends.

Rett Syndrome prevents Caroline from expressing herself and moving the way she wants to. The disorder, however, doesn't affect Caroline's intelligence or her ability to love. She is an affectionate and sweet little girl. She says so much with her eyes, and is very observant and engaged. She understands everything we say to her, even though she struggles to communicate back to us.

Caroline is not to be defined by her missed milestones, but by her strength and sweet spirit.

What is Rett Syndrome?

Rett Syndrome (RTT) is a rare and debilitating neurodevelopmental disorder that mainly affects girls and robs them of their ability to use their hands, talk, and walk. Girls with RTT develop normally for the first 6-18 months before they lose these skills and begin repetitive hand movements such as wringing, clapping, or mouthing. RTT also often brings a wide range of serious medical complications including issues with chewing and swallowing, seizures, abnormal breathing, as well as gastro-instestinal and heart problems.