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.

 

Normal is Just a Dryer Setting

This morning I read a blog post commenting on another mother’s article justifying her decision to abort her son because he had Down syndrome.

And then I made the mistake of reading the comments.

No one argued that the woman the article speaks of was right in her decision.  I read of how children with Down syndrome are God’s special gifts and how the mother will have to live with her regret for the rest of her life.

Yet, my eyes focused on the words I hear so many times:

“I wonder how many babies are aborted and nothing was wrong?”

“These tests can be wrong. I know of women who were told their baby would have Down syndrome and their baby was born perfectly normal.”

Ugh- perfectly normal.

I often share my story about my pregnancy with Joshua and the prenatal tests.  And the way I was presented with the “option” (double ugh) to terminate my pregnancy, even after I watched my baby son suck his thumb on the ultrasound.

And then – every once in a while…

There it is. And my heart lurches a bit as my ears hear the unspoken insinuation.

And while I am sure it is never intentional, my special-needs-mama-mind hears:

“It is more terrible for a child who is “healthy” to be aborted.”

“It might be okay if the child had Down syndrome to terminate the pregnancy – really.”

I used to say when I was expecting my children before Joshua, “I don’t care what (gender) it is, as long as it’s healthy.”

How things can change.

Joshua wasn’t born healthy. He has a genetic heart defect and open-heart surgery at 6 months old. Colds and RSV turned into pneumonia which turned into week-long hospital stays every couple of months for his first 3 years. He has numerous surgeries and all dental work – even fillings- must be done under anesthesia.

I read in another blog recently that “healthy” translates for most to “normal”.

My son is not normal to most. He was born with Down syndrome. He was later diagnosed with autism.

He doesn’t speak. He is not toilet-trained and currently functions at about an 18 month- old level.

My perpetual toddler.

His life swirls in a plethora of acronyms: His diagnoses include DS, ASD and CHD.  He exhibits signs of SPD. He has an IEP, gets ABA and has been in both TMH and PLA classes.

Do these things make him and others like him not worthy to be born?

Why does the existence or even possibility of a disability qualify a child for extinction? Why was I not given this “choice” for my other “healthy, normal” children?

I had no “choice” and there was no “option”.    No choice is easier.

God says to choose life. He created all life, therefore ALL life is worthy of existence.

My momma told me after learning Josh’s diagnosis, “You know, sometimes we just know too much.”

I’m thankful that I had no choice.

But when I read or hear things meant as encouraging, yet somehow it still suggests that a child like mine is still not quite as desirable or quite as okay as another.

And it breaks my heart.

Not just my defensive “that’s-my-baby-you’re talking-about” heart, but for the hearts of those who can’t see him and those like him for who they are and not just for what they will become.

I’ve had friends tell me that during their pregnancies, Down syndrome was suspected. And they “refused” it, even turning in a doctor’s office from pictures of children with DS. And that God answered their prayer.

I hear shouts of “Hallelujah” and Praise God!“ when someone gives a testimony that their child was thought to have DS and didn’t.

I feel a little offended and a whole lot of heartbroken that others can’t see that my son is just as much a miracle as that “normal” baby.

My daily miracles include holding a soft, padded little hand that doesn’t feel quite like any other. I breathe in his sweetness and kiss little shell-shaped ears. I still can nuzzle a sweet little neck. In return, he gives me head-hugs and pucker kisses and cheek- to cheek smiles for no particular reason.

I drink in the uniqueness that is Joshua.

And thank God for his wonderful, worthy life.