***Warning: This post contains raw emotional footage that may be offensive to some!***
Since Verity was born four weeks ago, and came home from the hospital, she has spent most of her time abiding safely in her little home-nest. Her visitors have only added more love to her life.
She has not ventured out into the big world too much.
Several trips now to the clinic where her sweetness is admired. One to Grandpop’s birthday party where she finally got to meet the aunts and uncles and cousins who have accepted her as she is. A jaunt to the pediatric cardiologists’ office, then to the hospital, where she fit right in among other needy children and their caregivers.
My most painful fears when we heard about Verity’s Down syndrome were based on the rejection that our precious baby would receive from others. It hurt with a burning, stabbing pain to know that others would see her as a mistake. That they would look on her and despise her.
But I’ve seen very little of that in her first month. It’s easy to feel lulled to unreality while being cushioned in the safe zone. It’s not often that I am jolted back to the cold reality of that wide, wide world.
I did feel intense anger the night I watched Verity labor so hard to breathe, rage that there are bullies who have chosen to let their child’s heart defects go untreated because they have Down syndrome.
There was The Nurse With the ‘Tude, which may or may not have been related to Verity’s Down syndrome. But for the most part our sweetie has been surrounded by love and acceptance. The ache receded from my heart.
Now several encounters over the past few days have re-opened that bitter wound. And it turns out that the ugly lies are not all out there in the secular realm.
I’ve been jolted by the reality that many Christians still think about babies from the world’s perspective. They accept the world’s terms. When they say a child is perfect, they do not mean, “Fearfully and wonderfully made, period.” They mean, “Photogenic, gifted, easy, no extra needs.” Their words betray their true beliefs.
I was forced to face the fact that some of my Christian sisters pray against having a child like mine. That many of them think, “Yay! We got a PERFECT, BEAUTIFUL child who is SHARP AS A TACK, and not the kind you got!” And that their baby born without special needs is a miracle, but my baby with Down syndrome is what? Not a miracle, I guess, huh? They do not want a baby who needs more of them than they want to give.
I’m realizing the hardest part for me about the Down syndrome thing is this–other people’s rejection. Other than that, what is the big ‘ol hairy, scary deal? Really. A child who looks different and learns differently. So? For a home educating mother of many, this looks like an opportunity for learning something valuable that we wouldn’t otherwise learn.
But now I know that there are Christians who think about my needy child as though she was a burden to bear, a tragedy, a sad circumstance, a hardship, a bitter cup to drink, a disaster on a level with a house fire or a severe drought or a bank failure. That’s why it hurts inside of me, a mother whose soft, fragrant wee girlie is a human being made in God’s image, when she is discussed as though she were a tragic thing.
Some would tell me, “Woman, grow a tougher skin. There are plenty of people around who will accept and love your baby. Focus on the positive and let those other people be wrong if they want to be. They don’t know what they’re missing.”
That may work for some. And some may not struggle right at this spot where I am. They may hurt for other reasons, or not hurt at all.
But that isn’t the way God designed me to function. And this is the pain He has allowed me to feel. I cannot just ignore the negatives. I have to do something with them, find out where they fit with the truth that God has revealed in His Word. What is the truth that will counteract these lies? I don’t want to grow tougher. I want to know what is the godly and gracious way to respond, both to the wrenching hurt inside of me, and outwardly, toward those who are deceived?
“Then a dispute arose among them as to which of them would be the greatest. And Jesus, perceiving the thought of their heart, took a little child and set him by Him and said to them, ‘Whoever receives this little child in My name receives Me; and whoever receives Me receives Him who sent Me. For He who is least among you all will be greatest.’”
I had always pictured this scene as Jesus with a typical kid on His lap. I had never pictured Him with a child who has a face that proclaims her special needs to the world. A face that will never be acceptable to some people, no matter what pretty hair bow she wears on top.
What does it look like in real life to receive Jesus? Photogenic social acceptability?
“He has no form or comeliness; and when we see Him, there is no beauty that we should desire Him. He is despised and rejected by men, a Man of sorrows, and acquainted with grief. And we hid, as it were, our faces from Him; He was despised, and we did not esteem Him.”
So to receive Jesus, we must be willing to receive one who is despised. We must be willing to receive one who will suffer rejection, who will not be esteemed.
“Therefore Jesus also, that He might sanctify the people with His own blood, suffered outside the gate. Therefore let us go forth to Him, outside the camp, bearing His reproach.”
Jesus, we love You. We welcome You. If this is where You are, then this is where we want to be, too.
And oh yes…for those who do the despising…
“Father, forgive them, for they know not what they do.”