A Different Kind of Beautiful

Editor’s note: This is a guest post by Vicki Neely for a summer series highlighting great writers who focus on disability.

neely family

There is a beautiful, inspiring video called “Dear Future Mom”, addressing a mother-to-be whose unborn child has Down syndrome.  Children and young people with Down syndrome themselves speak to her, telling her what life will be like.

“He will hug you.”

“He will run to you.”

“He will be able to speak.”

But wait…

My son has Down syndrome.

He is less than a month from his 12th birthday and completely non-verbal.

“He will say, ‘I love you mommy.’”

Words I’ve longed to hear with a deep, hollow ache.

I’ve wept a thousand prayers asking God to loosen his tongue for him to speak.

Because words are life-changing.

My heart pleaded for comforting words as I felt my son’s stirrings within my womb; instead, I heard, “You do know he will be moderately to severely mentally-retarded.”

Stories and blogs and video clips of those with Down syndrome accomplishing great things fill the World Wide Web.

I too searched the internet in its more limited scope twelve years ago. I became an information junkie and sought to prove that doctor wrong.

Scouring the internet and scrolling through picture after picture to find hope instead of the dread and anguish I felt.

One particular picture of a young teen-aged blond boy on a surfboard took my breath away.

It was my picture of how my Josh would look one day.

My Joshua looks very different than that imagined boy.

Our life with Down syndrome looks different from the “Dear Future Mom” video.

Our life with Down syndrome is sprinkled with autism.

Would Future Mom want to watch our video?

My life looks like waking to the sound of a loud toddler toy at 5 am.

Most days look like most others: watching movies, looking at books and DVD cases, throwing toys, wandering around the house and maybe going for a car ride. We have spent an entire spring break week at home.

Well-meaning friends often suggest things to do and I find myself replying, “No, he can’t do that,” way more than I would like.

I don’t attend workshops explaining puberty to my growing son who wouldn’t understand. I don’t go to seminars and conventions because the subjects don’t apply, the activities are too difficult and I delete a lot of emails from our various associations.

“He will help his dad fix his bike.”

Josh can’t ride a bike.

“He will be able to write.”

Josh doesn’t hold a crayon.

The stated possibilities of Joshua working, earning his own money, renting an apartment and living alone seem light years away for a boy who just learned to drink from a cup.

Countless times I have heard, “Treat him like your other children.”

I’ve tried, but it’s too different.

I was told that with early intervention and therapy and inclusion that nothing would be out of the realm of possibility.

But I did all that. I still do. And for a while it was the picture of what it was supposed to be like.

Then it became different.

We were no longer “More alike than different.”

We are now more different than alike.

Yet I still have hope.

And I realize that different is not necessarily bad.

It’s just that: different.

Joshua says, “I love you mommy,” differently in his smile, in the gentle pull of my head to his and in the way he twirls my hair with his soft, chubby fingers.

His middle-of-the-night giggles make a sweet alarm.

I treasure this precious time, as I sit on the couch and write and listen to him clap, then sigh with delight.

I hear him smacking his tongue which tells me he’s thirsty and soon he’ll be up looking for a drink.

And I should make him do it himself… at least I’m told.

But I probably will get it for him.

I don’t mind his dependence on me, really.  But we work toward independence while trying to focus on the “can” and not the “can’t”.

Independence and accomplishment are good things.

But they are not the thing.

Joshua is fearfully and wonderfully made. His life is worthy because he is a child of God.

He is not Down syndrome.  He is not autism.

He is Joshua.

“He will be happy.”

Josh is happy.

“And you will be happy too.”

And I am.

The video of our life with Down syndrome is every bit as beautiful as the “Dear Future Mom.”

It’s just a different kind of beautiful.

***

Vicki is a wife, mama, homeschool teacher, maker of things crafty, dance-loving, piano-playing, newbie runner, coffee and sweet-tea drinking Southern girl who really, really loves Jesus. She rekindled her love for writing through her blog, Spinning Plates at www.vickineely.com, where she shares her heart on  family, faith, special-needs parenting, loss, and redemption while on her journey through this exquisite life.

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