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Building New Dreams Through Special Needs

A Mother’s Journey

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Article by Jami Nato

Lila cackled, “Mom! Roll down the windows! Look at my face!” 

I looked through the side view mirror and found the most joyful smile and laugh streaming through the glass with the sunset's glow behind her, begging me to see the beauty in that moment. 

Look at her face.

I was thinking today, our Lila was a toddler when we figured out she wasn’t a normal kid. I don’t mind saying “not normal” as far as development: she is completely outside normal development for her age. 

I’ve written about having a special needs child from the beginning, trying to process the change and sometimes grief. I read some old journal entries where I began thinking through what happens when the whole "special" thing isn’t cute anymore: when she’s bigger and has demanding needs and is our forever child. When dreams I had for her die every day and I have to just watch it all unfold? 

When you have a special needs child at first it’s like wearing a new backpack of weights, uncomfortable shoes, and a different pair of shades. All the ways you used to see the world change, sometimes inside of one minute.

Now she is a big kid, and I am living in that very fear I wrote about years ago when she was three. But, we have learned to stop wanting something different and to be content with the beauty in front of us, sometimes begrudgingly and sometimes wholeheartedly. 

And while I ride the see-saw of back and forth feelings, guess what she’s doing: laughing all the way. If you've met Lila, you know she is regularly belly laughing, abounding with joy. No fear. Dreaming about, “Next year, I’ll play volleyball. Next year, I want a stickers and volleyball birthday party with my friends.” 

She has no idea how to play volleyball, and isn’t all that coordinated, but her enthusiasm persuades me to buy the dream—and a volleyball—at Target the next day.

Lila is not fearful of the future; she laughs. And I want to be like her so much. She teaches me everyday to let my expectations go because, perhaps, God’s ways are higher than mine. I let go of some dreams only to gain a few more new ones and they are nothing like I thought. Some of them are way better. And, well, some of them I conjure a forced, awkward laugh and say, "OK... gonna trust you on that one, God."

But even in that, my faith is building. My faith that this girl was made for us to be able to see more good, appreciate difference deeply, and love with abandon those who don't quite fit the mold. 

Lila means night (and dark haired beauty), and thinking about darkness automatically makes my brain quote: ”Darkness may last for a night, but joy comes in the morning.” 

She teaches me so much, even in the darkness as I feel my way for a path. Her laugh would lead a lost soul out of a cave on any given day, but let me say clearly: It is me she has led to the light now, for 11 years.

Follow Jami Nato @jaminato

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