Tag: we could have missed this

grant me this one request….

It’s October 1st and October is Down syndrome awareness month!
 
Let me share a bit of my past with you. When I was a teenager, I was very involved in the pro-life ministry at our church. We would go to the local abortion clinic in Bridgeport, CT and do sidewalk counseling with the women who were entering the clinic. We would offer to pray with them about their decision, we offered practical help, options for them and their baby, diapers, clothes, classes, anything they needed….ongoing care and support through their pregnancies and after the birth of their child.
 
We offered options for them other than abortion. We truly cared for the mother and the child and we cared what happened to them.
 
Being on the front lines like that at a young age, I knew a tremendous amount of information about the bitter reality of abortion. Every Saturday, we would stand out there, rain or shine, freezing cold or bitter heat…and we’d pray…and sing…and counsel. Sometimes, as we sang, we could see the women peeking through the blinds to watch us. Sometimes our singing would draw them back down, back outside, back to us….back to life for their child. The ministry saved hundreds of babies’ lives, and helped SO many women throughout the years.
The front lines…that’s what it was. We were the last stand between life and death for those children.
We were passionate about LIFE for these children.

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In high school, I was a cheerleader…yes, hard for ya’ll to imagine…haha…but our principal’s daughter had Down syndrome and she was a part of the cheerleading team. We all just adored her and she was the brightest, happiest girl. The basketball fans roared their approval when she’d do the end cheer with us lifting her up or she’d slide her way to the front of the orchestrated cheer. Everyone adored her. She was a beloved and accepted part of the school.
We didn’t think anything differently of her. We just loved her.
 
Because of my pro-life involvement, I decided to write a research paper about abortion for one of my high school projects. In my research, I discovered that a very high number of unborn children who have Down syndrome are aborted….just because they have Down syndrome. I was stunned. I knew people who had Down syndrome and I loved them. They were happy, loved, attending school, living their lives in their own sweet way.
The day I read those statistics….I had a request…. with tears in my eyes, I prayed a sincere prayer. “God, when I grow up and get married, please let me become pregnant with a child who has Down syndrome, because it’ll mean one fewer child that will be killed.” And I meant it with my whole pie-in-the-sky teenage heart.
Now, God didn’t answer that prayer. Not in the way I asked it. Does He ever?
None of my biological children have Down syndrome and it wasn’t even anything I was thinking much about when we started the adoption process.
But God….
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And so here we are.
And here he is, a miraculous part of our family. Lian’s name means “God has answered”.
It still gives me goosebumps because this was the name the orphanage gave him.
How?
How does this happen? How does God take a prayer from decades ago and answer it in this glorious way?
He takes our desires and transforms them as His own…He takes our dreams and consecrates them into His holy plan.
Who knew that He was preparing the way in my heart for the moment when this child’s life would be forever entwined with ours.
I still shake my head in wonder. I still pinch myself. I still look at him and marvel that he’s here….this package of wonderful, extra, mischievous chromosomes.
Let’s celebrate the fact that these beautiful people are in our lives, making us see God more clearly through their sweet spirits and amazing journeys.
Two years ago, on October 30th, Lian was placed in our arms. I am grateful and humbled beyond words to be a part of his story.
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Micah 6:8
“He has told you…what is good…and what does the LORD require of you but to do justice, and to love kindness, and to walk humbly with your God?”
Let’s just do this.
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And so it is.

a downsy?

How we label people matters simply because our society has so incredibly devalued the lives of humans who have Down syndrome.

“Oh, he’s a Downsy? He’s a Downs kid…a down syndrome baby.  Is he a Down syndrome boy? That cute little downs kid! That Down syndrome girl…she just had a Downs baby! Was he abandoned because he’s a downs?”

I know that any parent of a child who’s rocking the extra chromosome is cringing right now.

 

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Seriously, I’ve heard all of these and more! Before we had Lian, I really didn’t give much thought to these phrases and I probably used them a time or two, unthinking, unknowingly. I mean, what’s the big deal, right?

Are we, as parents of children who just happen to be blessed with that minuscule extra chromosome, are we being overly sensitive? Too demanding? Too picky?

Hmmmm….. Let’s just do a little experiment here. Let’s switch Down syndrome with something else.

“Oh, that palsy boy? What a cute, little, palsy baby! Oh, she’s a bifida kiddo. Did you know that Amy has a cancer brother, too? Yeah, she’s a cleft girl.”

No. We would respectfully say, “a little boy who HAS cerebral palsy, a little girl who HAS spinal bifida, Sally has a brother who HAS cancer, she HAS a cleft palate”.  None of these things degrade the value of the person at all.

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For example, above is a photo of Lian, who has Down syndrome, with his grandfather, who has cerebral palsy. Neither of these two men allow their condition to limit whom God has made them to be.

It’s called “people first” language or terminology. And, to be honest with you, I learned this AFTER we adopted Lian, but it makes SO much sense and I’m very grateful I learned it.

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As parents of children who just happen to have special needs, it’s so incredibly important to us that you aren’t counting chromosomes and handing out labels before you first see our child as a person. He’s a person first. A person of value who isn’t defined by a diagnosis, and, in fact, has struggled to overcome, to fight for, and accomplish more in his short life than most of us will in a lifetime.

How we label people matters simply because society has so incredibly devalued the lives of humans who have Down syndrome.

Their lives are demeaned to the point that these tiny persons are routinely aborted, never given the chance to brighten the world with their sweet spirits and sunshine smiles. These children are routinely abandoned in many countries solely because of their chromosome count.

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“For God sees not as man sees. Man looks on the outward appearance, but God looks on the heart.” I Samuel 16:7

So, the next time you see a parent of a child who is obviously blessing all around him with his cute wave, his husky boy hello…Just smile and allow his sweet spirit to lift your day.

I don’t want this defining question, “Is he a Downs kid?” to be the first thing Lian hears every time he meets someone new.

I want him to hear, “Wow, great signing, Lian! I hear that new word you’ve been working on for months! I love your smile! What a strong boy you are! Thank you for helping!”

And if you feel like you can’t possibly say anything nice, just move on. Please!

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Because who he is isn’t defined by a chromosome. If you could just look past the label, you’d see a child with an enormous heart, sensitive to those who are hurting, ready to dole out hugs and light up the room with his smile. You’d see a little boy who reminds us to pray when we forget, who raises his hands to God in worship service when I’m too self-conscious to, who insists on praying for someone who is injured or sick. You’d see a little person who speaks to God as if they are best friends, who commands the rain to stop with all the audacity of being a beloved son of the King, who makes us laugh all day long.

He, and all of our beautiful children who just happen to have Down Syndrome…they are infinitely more than the label.

So don’t introduce them with the label first.

 

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