trisomy 21 – This Eternal Journey

fear is an anchor…

What if I told you I was afraid….yes, I’m afraid.

white flower

Ignorance really is bliss during your first adoption. There’s SO much you just didn’t know and you looked at SO many smily, family photos, watched SO many tear inducing YouTube Gotcha day videos. Everything is new and amazing, sweet and lovely. You step forwards in “faith”, but a lot of it is stepping forward blindly because you really have zero idea what it is you’re getting in to.

Similar to being a new parent, there are all of these pre-conceived notions of what your birth, delivery, and basically what parenthood will be like and most of those fantasies are really shiny and pretty.

The reality of it is that when you’re staring at the pregnancy test of your second or third child, there is joy, but it’s laced with a bit of anxiety and fear, and just plain exhaustion…Am I enough? Can I love this child the same as the first? Will there enough of me to go around?

Am I right? It’s different the second time.

I’m feeling the same way with moving forward with this next adoption. I look at Lian, I look back over the last 2 years, and yes, it has been AMAZING, and we’ve learned so much, and have been so blessed, but there’s a weariness and a caution laced with fear that I feel dragging us down, holding us back, anchoring us to this earth.

There’s no shiny happily-ever-after view, it’s now all reality…..in all of its hard and wonderful, broken and healed hallelujahs.

And I’m afraid. The “what ifs” press down upon me like stormy waves. The “Was Lian an anomaly? Was he too easy or was he hard?” “What if Ella is hard, like seriously hard…..harder than Lian?”

And fear whispers in my ear because I allow it to be heard.

BUT……

Nowhere is God involved in fear. 1 John 1:18 talks about how “perfect love casts out fear…” and while the correct context of the verse instructs us to not fear eternal judgement because we have accepted Christ’s perfect love, I believe that the Holy Spirit can also give us a perfect love for others, a love that can ascend past the anchor that is fear.

And so, my prayer for this journey isn’t that we would have a blinded, rosy view again…. it’s that God would give us perfect love for this next little one who needs a home….the one who waits.

God, give me perfect love through the long, exhausting, international trip. Give me perfect love through Ella’s grieving process, through her health issues, the specialists and doctor’s visits. Give us all perfect love to, once again, step forward, accepting the hard with the glorious.

Give me perfect love to climb this mountain again. Cast aside fear because You have no part in that.

Recently, this song by Matt Kearney popped up one day in the car…and the words…struck me….and I listened to it with tears streaming down my face, because every word of it is TRUE.

NEVER BE READY

We got our feet on the wire
Talking ’bout flying
Maybe we’re diving in over our heads
Scared of what I’m feeling
Staring at the ceiling
Here tonight

Come on and lay down these arms
All our best defenses
We’re taking our chances here on the run
The fear is an anchor
Time is a stranger
Love isn’t borrowed
We aren’t promised tomorrow

We’ll never be ready if we keep waiting
For the perfect time to come
Hold me steady, we’ll never be ready
When we don’t know, though we can’t see
Just walk on down this road with me
Hold me steady, we’ll never be ready

You’re OK here with me
Here in the silence
With all of the violence crashing around
Saying we can’t go
Saying we don’t know

This road that is narrow is the one we should follow

Basically, friends, we’ll never be ready. But God doesn’t call us to be emotionally, physically, mentally, and financially ready, He just calls us to be willing. The simplicity of being willing is something to rest in, at least it is for me. Because we’ll never be fully prepared for the twists and turns of another broken heart that God calls us to love.

If fear is an anchor, I don’t want it. I don’t want to be held back from the perfect will of God.

Perfect love has no fear.

“And we’ll never be ready if we keep waiting for the perfect time to come.”

The perfect time is now.

the heart part…

“Wow”, he whispers in his husky, little boy way as I open the locket for the 9th time that Christmas day.

“Who is that in there?” I whisper back. He smells like juice and crackers and boy.

His dark eyes meet mine. “Mama.” and he solemnly points to himself. Leaning down he plants a wet kiss on the locket. I brush off the goldfish crumbs and close it.

Stay close to Mama’s heart. Here you are. And I’m suddenly overwhelmed with the fact that isn’t this every child’s desire? That connection…that love…to be held close to their parents’ hearts? It’s such a basic desire….so easily given to our biological children….and yet, there are so many who never feel that love.

Lian just revels in this closeness….being this sweet center of the family. Not in a spoiled way…well, sometimes…yes…

but in the undeniable way that he is something that he never was before.

A part of a cohesive group of people who just adore him.

Have you ever been in a large group of people, sometimes for many years, and yet you’ve never felt like you were ever truly a part of them? As if there’s this whole whirling universe of connection out there and you see it, but you’ve never experienced it?

orange and and brown chess pieces

You don’t know what it feels like to be a part of the group, but you see that some people have it, they are IN, they are a welcomed, beloved part.

Take that feeling, because we’ve all been there, and magnify it by about 1000….because being a part of a family, feeling that closeness is something that children absolutely long for, dream of, cry out for.

The least we can do is hear their cries, make them a part.

I’ve always kind of been a loner in my life. I’ve longed for deep relationships, longed to be included, but I’ve always struggled. Being left out is my normal. I don’t say that for sympathy at all. I say it merely because I understand it thoroughly.

I cannot even imagine what it is like for some of these children who see their friends, their bunk mates, their buddies in the cribs next to them, be taken away to be with family. And many of these older children fully comprehend what is going on….that the more beautiful or the less medically challenged children get chosen first….they get to go away to be the heart of a family….and she is left alone for a myriad of reasons.

This just kills me.

You know what else kills me? Yesterday I was scrolling down the adoption list for children 3 and under….the number 1 age group to adopt from, the most requested age group…..

And this list went on and on…and every other child was Down syndrome, Down syndrome, no other health issues but Down syndrome….quiet, healthy, has Down syndrome, extroverted, healthy, Down syndrome, VSD Down syndrome, repaired heart with Down syndrome.

Why? LOOK at the videos of our son! He is a happy, wonderful, sweet PERSON who simply has ONE EXTRA CHROMOSOME.

And yet the world says that because of that chromosome, most children don’t even deserve to LIVE and if they DO live, they don’t deserve families. They will sit, day after day, in a crib in an orphanage….

This KILLS me.

And it’s one thing to look at Lian, to look at us and say, “Oh, it’s so amazing what they’ve done, but I COULD NEVER DO THAT.”

Yes, yes you could do this! This is doable for you, for many people. These children deserve you, a family, to LIVE and thrive in.

They deserve to be put in a locket and worn close to their mama’s heart every day. They deserve to be sung to at night and to choose between whether they want blueberries or blackberries for snack.

THEY DO NOT DESERVE TO BE CONFINED AND TREATED WORSE THAN CRIMINALS in broken systems that churn out damaged human beings.

They deserve to know that God loves them, that they are valued more than they could ever imagine.

Church, Christians, we need to EXAMINE ourselves and our priorities….examine why we elevate comfort over sacrifice.

selective focus photography of child s hand on person s palm

We are not called to live this way.

We are called to be leading the way to rescue these small souls.

If you are feeling called to adopt, please consider a child who has Down syndrome. They are the least of these. Trust me, their extra chromosome will fill up your family with so much love and life, excitement and wonder. You won’t know what hit you.

Let’s live life this way. Without fear. Let’s say “yes” to hard things.

What you think it the hard part will definitely be the heart part.

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.

newborn child feed

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….

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.

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.

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.

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.

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.

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.

“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!

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.