Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Hope, Next Exit!

on June 2, 2012

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As a child, I can remember taking many car trips along Florida’s scenic highways.

If you’ve ever driven into the state, you may have noticed signs advertising one of the 5 “Florida Welcome Centers” which have greeted visitors to the Sunshine State since 1949. Here, travelers are treated to a free glass of Florida citrus juice and given maps, brochures and other helpful information for the journey ahead.

Today was the 10th annual “Make ‘m Smile” event in Orlando. This community festival, sponsored by Nathaniel’s Hope and Christian radio station Z88.3 celebrates kids with special needs (VIPs) and their families. The event included free food and fun activities for the kids, a chance to be paired up with a volunteer “Buddy” from the community who would lend a hand as the VIP child visited the different activity zones and a vendor area with booths offering a myriad of different services and products geared for children with motor, cognitive and behavioral challenges.

This event, which happens only once a year, was perfectly timed to serve as a sort of “Welcome Center” for the journey ahead.

Brochures and maps? I picked up about a million!

Free OJ? No…but they did have a booth offering free orange sections as snacks ๐Ÿ™‚

Instead of juice, they were offering hope.

At several points today, I stopped to look at the faces of the parents and children in the park. Some were battling invisible illnesses, undiagnosed, perplexing and frustrating; some were battling terminal illnesses, cancers with long names that are hard to spell and even harder to cure. Some were like us, new travelers just setting out on their journeys; still looking a bit shellshocked and as hungry for information as we were. Other travelers were obviously seasoned. They blithely maneuvered wheelchairs through the grass and casually wiped the drool from their sweet child’s face while chatting and smiling as though the whole experience was the most normal thing in the world to them.

They smiled!

I mean, I know the event was called “Make ‘m Smile” but everywhere I looked, people WERE really smiling! The kids were smiling, the parents were smiling, the volunteer “Buddies” who came out to help the kids were smiling-

It was all just so…hopeful.

Our lives will never be the way we imagined and I’ve made peace with that. I am raising a daughter with special needs who may never be “normal”. (Instead, my husband Michael says, she will be extraordinary!)

And while the road ahead appears dark and treacherous, we have maps now to help us navigate and fellow travelers to help guide us along the path. We WILL find a “new normal” in time.

Whatever the future holds for our daughter, we have hope.

We are smiling!

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6 responses to “Hope, Next Exit!

  1. evsmith07 says:

    Prayers for you and your family <3. Your posts are so inspirational and your daughter is so blessed to have a mom like you ๐Ÿ™‚

  2. Marla Appel says:

    It is wonderful to read such a positive blog. As many have told me remain positive and it sure does make a difference.

  3. Sue Nickel says:

    Joscelyn’s name is going on my prayer board in my home. I will have the date of surgery there too. You have a fantastic outlook. Just now you are inspiring people you don’t even know (like me) and touching all their lives. Our prayers for Joscelyn will start tonight ๐Ÿ™‚
    Sincerely,
    Sue from Illinois

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