A Different Kind of Wonderful

Recently a beautiful, inspiring video went viral 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 that 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 like 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 this 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 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 even if not the same.

It’s just a different kind of wonderful.








To Those Who Use the “R” Word

Today is the Spread the Word to End the Word day. A day of awareness to end the use of the “R” word” retarded, retard and any other forms of such, like ‘tard’.  A day recognized as a day for change.

But I and many others live this day every day fighting against the use of a word.

A word once used as a diagnosis is now used as a term of insult and mocking.

No place is sacred.  Not stores or schools or even church. Corridors and walls echo “That’s retarded “, “I’m so retarded,”  “You look like a retard,” and the list goes on. The word invokes such creativity is seems.

From “My hair looks retarded,” (Statements like these are so grammatically incorrect and frankly ridiculous I won’t even waste my time to comment) to a Facebook meme referring to laughing like a retarded seal.

Just how is the seal retarded?  He flaps his hands, like one with autism.  Is that what is funny? Is this what makes the seal “retarded”?

I ashamedly and reluctantly admit I used to use the word before it became personal.

And I don’t really recall my thought processes as I so flippantly berated myself by mumbling, “I’m so retarded.”

How I wish someone had asked the questions so I would have realized how hurtful it was.

So I ask you who continue to use the word: What makes something “retarded”?

What makes someone or something sound “retarded”?  Is it noises like those who cannot speak make?

My son makes that “retarded” noise when he opens his mouth and has so much in him to say but only a grunt will come out.

And I often tear up because he wants to speak so badly and I see the frustration swimming in the pools of his blue almond-eyes.

He acts “retarded” with his obsessive towel-twirling and uncoordinated movements and not being able to use the toilet on his own while having to rely on others to change his large pull-up type pants exposing him in ways that would  mortify a typical almost-12 year-old.

But he cannot express his embarrassment. He must deal with it because we have to change him. He cannot tell me when he’s sick, or sad, or just plain in a bad mood.

He’s developmentally delayed.


Do you see my son when you say it?

Or do you see a young man in a wheelchair with his head slumped over with drool seeping from his mouth?

Do you see a little girl with almond-shaped eyes whose tongue might hang out a little when she gets tired?

Or do you see a teenager who talks a little like he has marbles in his mouth and is hard to understand?

Do you see an adult with her caregiver in Walmart who runs up to give you a hug?

Do you see my son when you say it?

I see my son when you say it.

And it breaks my heart.

Because I see a smile that can reduce me to a sobbing mess because the soul behind it is so pure.

Because I feel a chubby hand in mine and on my face and I hear a belly-laugh from a boy who sees angels.

You – the one who still uses the word: Do you realize that it cuts so incredibly deep because I know there is an unspoken idea that maybe you are so thankful you don’t have a “retarded” child?

Or think it will never happen to you.

I sure didn’t.

What about you who are politely asked to stop and yet simply refuse?  Who tell me or my kids it’s just what you say and you aren’t going to stop?

Do you think I’m too sensitive?

What about you who tell me that I am and that it’s just what “everyone” says.

And that it’s not aimed at my son.

Does the “N” word offend you?  It does me.

But if it’s not aimed at you or one of yours or even one of my friends, should it be okay?


We are to speak life and not death.

The “R” word speaks death because my heart dies a little every time I hear it used by someone in the halls of my church who I know also loves my son.

Death every time my children have to hear friends use it and being mocked for standing up against it.

Would Jesus say “retarded”?

Would He fight so hard for His “freedom of speech” and right to say it?

He came to heal the brokenhearted. He spoke life and love and honor.

The “R” word speaks death and hate and disrespect.

Yet I’ve been told so much to the contrary.

I’ve been told that because the word simply means “slow” I shouldn’t be upset by it.

But is that really what someone means when by using the word?  What image do you see?

I see my son who would smile and touch your hand even if you called him that vile, horrid word to his face.

Maybe he’s too “retarded” to know better.

Maybe He is like Jesus and forgives them because they know not what they do.

Maybe he knows his mommy will not stop speaking out for him because he cannot.

What do you see when you say it?