Meg, is mom to four children one of whom is living with syndromic craniosynostosis. Her daughter, Avery, who is now six-years-old is proof that children are resilient and capable of so much.

She discusses the exhaustion that comes from being the caregiver for a child who requires around the clock care. Meg attributes family (20+ cousins!) constantly surrounding her with love to be one of the biggest parts of their coping.

"The first year is so tough, so buckle up. But once it’s over, you’ll be an expert on your child’s care and condition. Everything gets easier with times."

Meg says that following other families on social media who have similar conditions can be a great resource for connection and support.

To learn more, you can follow @meg_apperson and go to her blog www.fourfinelives.com. Read her book Sky Full of Stars.

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I worried that she might suffer some cognitive delays, but she is an incredibly bright kid! In my experience, when someone looks “different”, people automatically assume that they aren’t able to communicate or understand what’s happening around them. People act surprised when Avery speaks to them.

 

Yes! You can find me on my blog, www.fourfinelives.com and on Instagram: https://www.instagram.com/meg_apperson/