Waiting for “It”

A few months ago, a friend and I were discussing a comment made by Michelle Duggar on her show 19 Kids and Counting. Mrs. Duggar was consulting her doctor about having more children at her age and as they discussed the risks, she remarked that she has been “dodging these odds” for over a decade already.

My friend said that as she watched the show, she waited for “It”.

I recently read a blog post about a mommy and a surprise pregnancy- at the “high-risk” age.


I remember a conversation with a friend who didn’t want to have any more children after 35, because, “you know-the ‘risks.”

“Oh, you mean like having a child with Down syndrome?” I asked as I bounced my little “risk” on my hip.

“It.   Again.

Children with Down syndrome are born to mothers of all ages. In fact, more babies with Down syndrome are born to women under 35 simply because more women in that age group give birth.

According to the CDC, one in 700 babies is born with Down syndrome.

That number is pretty large actually considering the number of babies born daily.

And for those of us who didn’t “dodge the odds” – however small or large those odds happened to be…

We wait for “It”.

“It” looms large and hangs in the air.

“It” may be on a TV show, a movie, in an article, a blog or during a conversation.

I find myself holding my breath until “It” comes.

“When the doctors told me my daughter could have Down syndrome because of my age, he put me in a room full of these pictures. So I turned my chair the other way. I confessed she would not have “It” and she didn’t.   And she is SO smart.”  This from a dear sister in Christ, who finally told me because she thought I was ready to hear it.

No, not really ready.

One friend, on several occasions, a friend revealed to me that she would have aborted her baby if the test came back positive for Down syndrome.

Confession is good for the soul they say, but not always to the one hearing.

I often shake inside as the conversation unfolds. That building and escalating to the peak of that point when I know “It” is coming … and I often struggle with what to say.

“I wonder how many babies are aborted because the doctors were wrong and they were perfectly fine.”

My mind hears that to aborting a baby without “It” would be worse.

And my heart hears an underlying insinuation that people without “It” are more valuable.

I often weep that people find my son and those like him so undesirable and worth dodging.

Even the website for the CDC classifies “It” under birth defect.  I shudder as the URL pops on my page.

According to the CDC, my son has a defect. Why after twelve years of his life is this still so fresh?

Is it because I never even had “It” on my radar? Is it the attitude that “It” is the undesired result?

”It” is not just Down syndrome, but any disability. The attitude is much the same. So I nod and smile as people discuss the baby who was supposed to have this and that condition and is now the smartest, the most athletic, and the-whatever-opposite- of-what-they-were-told, – all the while I am screaming inside.

“Don’t you see?!?! There’s more to him! He is not “It”! I love him just as much as my children who don’t have “It”!

Why can’t the world see? Why did I never see before “It” entered my life?

I am saddened that a godly woman, known for her desire to have as many children God allows, missed an opportunity to tell the world she would welcome a child with Down syndrome.

Yet, I do believe Mrs. Duggar’s comment was not meant to be hurtful.

She and her family are obviously pro-life, making their beliefs very public. Recently, her daughter Jessa was blasted by the media for comparing abortion to the Holocaust. She specifically referred to Down syndrome:

“Millions of innocents denied the most basic and fundamental of all rights–their right to life….The belief that some human beings are “not fit to live.” So they’re murdered. Slaughtered. Kids with Down syndrome or other disabilities. The sickly. The elderly.”  And she goes on to say all life is precious.

I realize our words do not always line up with our intent; I believe Mrs. Duggar was trying to prove a point to those who think she may not need to “risk” having another child.

Unfortunately, “It” becomes the reason.

I am, however, horribly offended that a mother would look at a child with Down syndrome and tell her mother, “God would never do that to me.”

What is it about “It” that makes people so brazen?

I hear countless stories from my fellow special-needs parents of rude remarks, opinions, and unsolicited advice.

What makes “It” so horrible and frightful that doctors suggest ending an innocent baby’s life?

Why does not having “It” prompt cheers of Hallelujahs and testimonies of God’s goodness?

Did God not show Himself faithful to me?  What about those, like me, who prayed for “It” not to be, but is?

I know now that “It” is not a failure, lack of faith or unanswered prayer as I once thought.

On this side of “It”, I see the delicate beauty of those who look a little different but love unabashedly.

I treasure friendships formed by bonds of “It” that I otherwise may have never known.

On this side, I cling to His promises, praising Him for each new success, no matter how seemingly small.

I am struck by the enormity of a tiny word as I look back to one of the most difficult times of my life – when I awaited the test results for “It”.

The fear of the unknown and pride of the unfathomable plunged me into a chasm of anguish when “It” was confirmed and would soon be my reality.

Then I saw the face of “It”…

And love overwhelmed my soul while gratitude flooded my eyes for the exquisite creation from my God Who trusted me with such a gift.

A good and perfect gift just the same as if he were born without “It”.

“It” looks with longing almond eyes and smiles with hope.

“It” speaks with no words, while I beg God to quench the suffocating silence.

But challenges and differences don’t make us less, but make us stronger because through Him, the weak are strong.

The strongest I’ve known are weak in the eyes of the world.

If only my mere, fallible words could express my mama’s heart and tell of the love that is so deep and saturating to the point of that it practically hurts.

“It” will always be a part of my son’s life. Of my life.

I’ve heard so often when speaking of “It”, “Doctors are not always right. They don’t know everything. ”

Misdiagnoses do occur. But in our case, the diagnosis was correct.

But the doctor didn’t know everything.

Because no doctor could predict how much I would love and protect and guard my precious boy with a fierceness I didn’t know I possessed.

The doctor, who during his bleak announcement of doom and who could not see past “It”, would never see the exquisite and unique little soul that is my son. He didn’t know that child I was carrying would change hearts and minds.

No one prepared me for what “It” would mean for our lives.


God did.

I wonder if He waits for “It”?











Heart Sleeves

I have often heard that special-needs parenting requires a thick skin. However, this mama’s skin feels pretty thin much of the time.

My own momma used to tell me that I “wear my heart on my sleeve.”

So my exposed heart gets hurt and the skin under my heart-covered sleeve is fragile.

And I become weary.

Weary of the continuous fight. Education, services, therapies, specialists, doctors and the gamut of who and what is needed to simply sustain “special-needs life” overwhelms me at times.

My child, who cannot speak, possessing the cognitive skills of a toddler encased in a pre-pubescent body, often expresses his frustration through unexpected meltdowns and constant, loud stimming (self-stimulating behavior).

Learning a simple skill require constant repetition.

Nothing comes easy for him.

Heart defects and respiratory problems loom in the back of my mind as well as the risks of certain diseases more common in a child like mine.

I’m a guard keeping constant watch over a delicate, yet mighty fortress which is Joshua.

Other parents deal with similar issues. Some less. Some more.

Many watch helplessly as their child suffers from multiple seizures daily. Others cannot leave their home because of health or behavioral problems.

Others practically live in a hospital, as I did for several years. Surgeries become commonplace.

Others change feeding tubes, haul wheelchairs in and out of vans and struggle to get through doors while onlookers do just that. Look.

Penetrating stares and flippant remarks seem acceptable and even appropriate.

Name-calling and jokes are merely a Facebook newsfeed, doctor’s office and grocery store aisle away.

“Sit down! What are you, RETARDED??” yells a father at his running children as my husband sits waiting for an appointment.

“You know, I have the opposite problem. All three of my children are highly gifted,” boasts a mom as I push Joshua on a swing.

“You do know he’s sucking his toes, “says a woman disapprovingly to my friend.

“You must ride the short bus,” says a guy, driving an airport shuttle, to my friend whose son also has Down syndrome.

“There’s no such thing as ADHD. That’s just something lazy parents make up because they don’t want to discipline their children,” says a mother who is blessed to have children with no such issues.

We deal with insensitive bedside manner and quietly nod as doctors and specialists give their “expert” opinions.

“You know he will be moderately to severely mentally-retarded. You may want to reconsider terminating your pregnancy because you are so devastated,” says the obstetrician. To me.

“Your son is too profoundly mentally retarded to go to that school, “says a specialist. Again, to me.

Facebook pages dedicated to using people with Down syndrome for target practice.

Memes calling people retarded, tards, retards, potatoes.  And my friends “liking” them.

Look at my heart. On my sleeve, wet with tears for my precious boy and all those like him who would simply hug and smile at someone who called them that or posted that picture.

I have cried to the Lord in my most raw, real moments before Him that he picked the wrong person to do all this. Because I don’t have the stamina, the fortitude to withstand all that goes with this journey.

But God doesn’t make mistakes. He chose Joshua for me.

His life is worth every single hard thing I must do.

Or hear. Or read. Or even ignore.

God’s grace enables me to turn the other cheek when I want to scream, “YOU DON’T LIVE MY LIFE!!!”

He has entrusted me with much.

Often the most difficult is not what I must do for him, but what I have to hear about him.

But hurtful comments and careless words are no match for his smile.

And I realize that I am able because His power is made perfect in weakness.

And while my heart my lay open for all to see, I know Who holds it. And as long as it beats, it will always be vulnerable as not to harden to the harshness of this world, but to soften the hearts of those around me.



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A page in a cookbook,

Splattered and stained

From years of birthdays –

A recipe for my love’s favorite.

Made every year

Yet every bit as wonderful as the first time.

Or maybe better since I’ve made it more.

Tried and true,

Because it is amazing.

And I know it so well.

The page falls open again

For another birthday.

Yet every bit as wonderful.

Or maybe better, since I know him more.

Tried and true,

He is amazing.

Because I know him so well.

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My Coffee Table Life

I enjoy decorating.  Finding and placing and arranging things pretty. My house is now full of things I love from my childhood home that scatter memories of those I love and those waiting for me in Heaven.

I pin décor and arrangements on Pinterest – pictures of mantels and shelves, bookcases and walls.

And decorated coffee tables.

There was a day when my coffee table held pretty things. Strategically placed and dusted and shined.

Slowly, the coffee table became a place where I propped my feet as I nursed my babies. It has held finger prints of toddlers scaling its sides. It is now often sticky with cereal milk, or pancake syrup. It serves as a Yahtzee and Uno-playing table.

No beautiful coffee table books reside there, but instead a menagerie of stuff that manages to take up residence at some point on this four-legged stuff-holder:  Southern Living, homeschool books, an IPad, ear buds, DVDs cases, Josh’s white rags, my tattered Bible and journal, pens, pencils, and various remotes (all in a pretty basket, of course).

Not that ALL of that is there at the same time.

Well, maybe sometimes.

But my coffee table reflects my life. Not only my life now, but how it has evolved.

From freakishly- tidy and arranged to functional and lived-in.

The table is scuffed and the stain is rubbed off in places. Feet places.  Truth be told, we could use a new one.

I clean it, polish it, straighten things on it, and cull out unnecessary items. Sometimes I consider placing some pretty candles or an arrangement of books.

But then I think of the feet that will prop on it and decide to leave those things for the shelves.

Those can stay pretty. The coffee table for now will be functional.

I may or may not have years to come of “pretty coffee table”.  I’ve heard moms say that when their children are grown and gone, and they can have things the way they want them. Or empty-nester moms with impeccably-decorated houses who say it wasn’t’ always that way.

But with my Joshua, I may always have a “child” around.  And I hope to have grandbabies scale my coffee table one day in the future.

So I can gaze at Pinterest and lovely tables. Mine is fine for now. But I may go clean last night’s pizza sauce off of it.

All That Is Needed

Pure contentment. That feeling that all is right with the world.

With so many challenges and trials of life, often contentment is replaced by grumbling, complaining, feelings of dissatisfaction and emptiness. This past year, I confess I have experienced more of the latter than the former.

But recently, I gazed into my living room- my own little world -and I glanced upon what was right and beautiful and amazing about my life.

Not an extremely out-of-the ordinary evening – but I’ve found that family time gets more scattered as children get older and our lives get busier, as little people grow and develop their own friendships. But this night, my family was all in one place. Even my special-needs son, who for so long would not stay in the room during family time.  A little thing that many take for granted, but to which others can relate.

As I was  finishing up the dinner dishes (actually just stacking them to do later as not to miss this precious time), scooping ice cream and ever-so-sneakingly squirting sweet-boy’s meds in his (don’t judge me, it’s the only way he’ll take it)-  I stopped.

And I breathed a prayer of thanks to the Lord.  I absorbed the feeling of all-is-right-with-the world. I let out sigh of praise. For the moment. For being able to serve my family.  For being where I love, with those I love.

I handed out bowls and then I fed my precious little boy ice cream laced with Amoxicillin. Then I snuggled up next to my youngest and took out some knitting.  A movie played but my husband was the only one really watching.  My oldest son did schoolwork, my daughter scrolled on her phone until she fell asleep, my youngest watched football videos on my phone that has no sound and my sweet boy began to doze off next to his daddy.

But we were together in the moment. I have set a goal this year to be more intentional. To live fully in each moment God has given me. To be content whatever the circumstances. .  Discontentment seethes of ungratefulness. And I have so much to be grateful for.

Like most of us, I get so distracted and preoccupied with life.  I am like Martha when Jesus said, “You are worried and upset about many things, but only one thing is needed. Mary has chosen what is better, and it will not be taken away from her.”

Many times, it’s about choosing what is better.  Though there was still much to be done and always more waiting, this was what was better.

And as I lingered in the presence of my treasures in the room that night, I realized it’s not about the activity taking place. It’s about presence.

My presence. My family’s presence. God’s presence.  Nothing else is needed.

Pure contentment.