DS Awareness: What I Know For Sure

First of all, I want to thank everyone for the support and encouragement you've shown us this month. Some posts were so very hard to write, but y'all were so kind. 

I feel like whatever we do: write, preach, teach, sing, minister, work, parent, volunteer, love...we need to remember that while it might affect others, our goal is to please an audience of ONE. I pray God was glorified, because what I need more than anything in this world...is more of Him, and less of me. 

I'm a pretty private person, so sharing such intimate parts of our lives on social media has been a huuuuge stretch for me. But y'all kept me going...and now, on this last day of the month...Mommy needs a nice, long nap. Ha. 

This whole month has been about Down Syndrome awareness...which will hopefully lead to acceptance for individuals who have Down Syndrome, and for the ones who love them. 

I don't know what our lives would look like without Down Syndrome. I can't even imagine. I don't want to imagine. 

For us...for our family...it's brown, almond-shaped eyes and a big grin. It's hair that he flattens down every day but Thursday (he "spikes" on Thursdays). It's singing #onthesamenote in every song. It's hearing "you're pretty," and "you're a good cook," and "my dad is a furious protector..." pretty much every day. 

It's help setting the table and unloading the dishwasher and straightening up around the house. It's him taking my hand, and saying, "let's pray" when he hears of a need. It's sheer determination, day after day, that makes his hand hold a pencil, so he can write letters on a page. It's overcoming a hearing deficit by using intense concentration. It's walking past his room to see him on the floor...in prayer. 

It's strength beyond his physical appearance that enables him to lift a bar and metal discs nearly twice his body weight. It's the way small feet wearing Crocs sound walking across the floor, or going up the stairs. It's the matter-of-fact way he accepts the truths of God in childlike faith. 

I don't pretend to understand the mind of God. All of these kids...these adults...God created them. And "God don't make no junk." He created them just the way they are...or He has allowed their circumstances...for His purpose, and for His glory, and for our good. 

I don't always see it...because with some people? Their lives are HARD and their challenges are great. But sometimes, God peels back a layer and allows me to see a glimpse of His purpose in all of this. 

For sure God has enlarged our territory. 

On March 28, 1986, our lives changed in an instant...and the focus of our family, and our ministry as a family, was made clear. Joshua has opened many doors for us to tell our story...which, really, is not our story at all...but the story God is writing in our lives. 

For sure God has enlarged our hearts. He has shown us more grace than we could have ever imagined. He's given us way more than we deserve. 

"Oh to grace how great a debtor, daily I'm constrained to be..." 

The goodness that has come into our lives because of God...because of Joshua, and the world his life has opened up to us...has enhanced and enriched our lives beyond anything I could have ever dreamed. 

"Let Thy goodness, like a fetter, bind my wandering heart to Thee." 

Fetter: "a chain used to restrain a prisoner." 

YES, Lord. Shackle our hearts to Yours. 

For sure God has opened our eyes. I wonder...if our hearts would've wandered if God hadn't given us Joshua. If pride and the pleasures of this world would've overtaken our lives, and pulled us away from what is truly important. Because, our hearts are weak, y'all. 

"Prone to wander, Lord I feel it. Prone to leave the God I love..." 

For sure God has stayed close...and kept us close to Him. 

In God's goodness, He chose Joshua for our family. Or our family for Joshua. And His goodness binds our wandering hearts to Him. 

"Here's my heart, Lord, take and seal it, seal it for Thy courts above." 

Joshua Garland, I choose you. Every.single.day. 

“Before I formed you in your mother’s womb I chose you. Before you were born I set you apart. I appointed you to speak to the nations for Me.” Jeremiah 1:5

A World Without Down Syndrome

First of all, thank you all for the love and encouragement you gave to our daughter, Holly, on her post from the other day. :) She and Joshua have a very special bond, and she has a unique perspective, as his sister.

Well, we are about at the end of October, and all of these posts on Down Syndrome Awareness. Hopefully, things are changing for individuals with Down Syndrome. 

I feel like if we could put ourselves in someone else's shoes...in their situation...then maybe we wouldn't be so quick to judge them, so quick to dismiss them, so quick to segregate them...even more than they already are. 

Because, life is tough...can I get an "Amen?" 

And, even in the best of circumstances, there are things that God allows, and things that we choose, and consequences we face from the actions of others...that can make life hard. 

In the case of Down Syndrome, these individuals didn't have a choice. They are either like Joshua: wanted, chosen and accepted...or they are neglected, abandoned, or aborted. Any way you look at it...it's not their choice. 

The other day, I watched a documentary called, "A World Without Down Syndrome." 

I watched it with tears streaming down my face. It was heartbreaking. 

I learned that countries like Iceland, have a 100% termination rate after a prenatal diagnosis of Down Syndrome, and the UK is way up there, too, at 96% or something outrageous like that. 

Here in America, up to 90% of parents who receive a prenatal diagnosis of Down Syndrome, choose to abort their child. 

This about tears my heart out. 

Is this how we want to live? 

Is this what we want to do? 

To completely eliminate lives we deem to be unworthy? 

The anchor on this documentary interviewed a woman who had had a late-term abortion after a prenatal diagnosis of Down Syndrome. She was 25 weeks pregnant. 

TWENTY-FIVE WEEKS. 

To put this in perspective, those of y'all who know us...my Clark was just 2 weeks further than that when he was born. 

She said she was given a shot to stop the baby's heart, and that it was "strange to feel him moving and kicking around one minute, and then nothing after that." 

ARE YOU KIDDING ME? 

We should not have this power, y'all, and any presidential candidate, from any political party, who says this is okay is wrong. This is NOT okay 

(Okay...breathe, Marty)

The rest of us...the ones who did not have a prenatal diagnosis, got to be surprised with this extra-special news at delivery! And we have spent our lives trying to figure things out...school, work, therapy, health concerns, relationships, independence. Lots of trial and error...lots of hit-and-miss. 

It's like someone giving you material, and telling you to make something without a pattern or instructions. 

Raising a child with special needs, without the support of family, friends and the church community, is like telling you to make something without a pattern or instructions...in the dark...in a storm...while hanging off a cliff. 

It can be very isolating...but it doesn't have to be. 

I don't have a lot of answers. I'm just here to talk about awareness...which I hope will lead to acceptance...which I hope will lead to us realizing that it's not good for anyone to do life alone. 

Did you know that the divorce rate in families who have a child with special needs is between 80-90%? 

Instead of making things easier on these families, we sometimes make it even harder. 

In order to know how to support them, we have to get to know them. It's time-consuming and messy to jump into anyone else's life, especially into one where we have no knowledge of how to help. But we can learn, right? And, if we don't know what to do for a specific child, maybe we can support the parents? 

I realize that we can't make every situation "okay" for every family, but maybe we can do something. Because, you know...it might be you one day. Or me. We are all a fall...or a heart attack, aneurysm, amputation, car accident, disease, brain injury...away from losing our mental or physical abilities, of needing lots of assistance...of being labeled, "special needs."

I guarantee we all have ideas of how WE would want to be treated, right? 

I wonder what would happen if each of us reached out to one person or family in our own little corner of life...single moms, foster parents, families dealing with illness, special needs, job loss, etc. 

It's almost like all of us, coming together, could be a kind of net. And then, if life got hard, for any of us, we could hold each other together. 

"...live worthily of the calling with which you have been called, with all humility and gentleness, with patience, bearing with one another in love..." Ephesians 4:1-2

Blemished and Imperfect: Choosing Shells on the Beach

Our family likes to go to the beach over Spring Break if we can. Rain or shine, it's a nice way to relax and unwind with the family. The weather in March is unpredictable. Some days are really warm, some are cool.

So, on one of our cool days, we decided to go on a family walk. Joshua was not a fan. In this case, I didn't really blame him. For one thing, it was sprinkling...and I know we were at the ocean, so a little rain on our heads shouldn't matter...but ain't nobody got time for THAT.

For another thing, Jim and the boys were acting like we were filming a segment for the Amazing Race. Seriously.WHERE'S THE FIRE? 

It's hard for some of us to walk on the sand.

So Holly and I decided to hang back with Joshua, and look for shells. He is not really a huge fan of that, either...but the walking and the looking and the choosing and the PICKING IT UP FROM THE SAND? All really good for Joshua.

So, I held the baggie as we walked. If I saw a pretty shell, I'd pick it up and put it in the bag.

It didn't take long to see a BIG difference in the way Joshua and I chose our shells. I was looking for the perfect shells. You know, the ones that weren't chipped, that didn't have one of those fossil-looking lines on it...the ones that had a pretty color.

But Joshua? I would see him, bent over a bed of shells. He would look and look, and then pick up one to put in the bag. Every shell he chose was broken, chipped...worthless, really. TO ME.

Joshua would pick up little pieces, and not care if they were whole or unblemished. In his eyes, each piece had value.

This had such an impact on me, because this is the very thing I preach: awareness and acceptance; how people are more than a diagnosis...and more than how they look on the outside.

I don't know if it's human nature to choose the perfect and beautiful...but this day was a huge reminder of how there is beauty in the broken...in the imperfect...in the missing pieces.

And I, of all people, should know that...God has been making beauty out of my broken...for my whole life.

"The LORD has made all things for Himself..." Proverbs 16:4

Down Syndrome: A Sister's View

At the beginning of the month, I asked Holly if she would write something about Down Syndrome I could share on Facebook, IG and the blog. She said, "I don't think so," I wouldn't know what to say," "I'm not good at writing," "I can't..."

Well, she sent this to me this morning...and I think it's great! Thank you, Holly! :)

Here is her perspective on life with Joshua:

Growing up, I guess I always knew he was different. I mean, just look at me and my siblings: Three are tall, blonde-haired, blue-eyed kids...the other one is "travel-sized," with brown hair and brown eyes. He stuck out like a sore thumb! What a nerd! (I kid!)

I don't really remember if or when my parents told me about Joshua having Down Syndrome. I'm sure they did, but I just don't remember.

Growing up with a family member who is "chromosomally enhanced," you have a different way of viewing the world...and it isn't the mouth-wide-open, staring, whispering-and-pointing way that the rest of the world sees it.

It probably helped that my parents didn't baby him, or treat him any different than the rest of us. Neither did me or my two younger brothers. We fought hard and loved hard (my poor parents!).

Actually, I'm sure that made a huge difference in how I view people with Down Syndrome, because Joshua's not a baby. He's just a person. He struggles with the same things we all struggle with, except he's handled it with a little more grace.

Maybe that's due to the extra chromosome.

Now, being the only girl, and having three brothers, I like to think I'm tougher than the average bear. Still, it's always nice to have someone in your corner. That's Joshua.

He's my biggest supporter. He is always encouraging...and he never fails to tell me how beautiful I look, even when I was 40 weeks pregnant, and OVER IT.

When my Mom asked if I wanted to write a post this month, I was hesitant. She's the writer of the family. She's the funny one. She is the one that everyone says should write a book. I think those genes skipped me.

Or maybe Joshua stole those, too?

Did you know he writes?

He has an endless supply of notebooks. They are FULL or stories. Granted, most of them would probably infringe on some copyright laws...

But I digress.

I had learned about Down Syndrome before, in school...but, obviously, a lot of my knowledge was based on my experiences with Joshua. I remember being in nursing school, and learning about things from a medical perspective. This was the first time I realized that the way much of the medical community thinks about Down Syndrome...is A LOT different than what I think about Down Syndrome.

And a lot different than what my family thinks about Down Syndrome...and a lot different than how the community of Joshua's FRIENDS think about Down Syndrome.

It was heartbreaking.

The professor for that lecture was horrible. She spoke in a heartless tone about how sad and unfortunate Down Syndrome was. I'm pretty sure my eyes saw red that day, and I'm pretty sure I (along with many others) did not give that professor a good review (for many reasons, not just that lecture). All the politically correct terminology we are told we "should use" is being shoved down our throats these days, but we still think the "R" word is okay?

Come ON, people.

But that's a different rant for another day.

Working in the NICU, I've seen several babies who were born with Down Syndrome. I've heard the negative comments, and I've heard a few positive ones.

Obviously, I do not have a child who has Down Syndrome, but I have Joshua. I know that Down Syndrome is not a prison sentence. I "get" that the situation is hard (some are harder than others)...that it will be trying...and that it will push some to the brink.

My brothers and I have all been "trying" for my parents, just in different ways. That's just part of growing up. BUT, I can see the blessings that Joshua and his FRIENDS bring to their families, each other, and their communities.

The one thing I want people to know, is that Joshua is just a person. He and his FRIENDS may look a little different (I've seen weirder folks walking around the mall, so, no need to stare). They may communicate in a different way. They have to overcome different obstacles in their lives, but that's it.

They are just...different. Not less.

They have the same emotions. They have dreams. They have friends. They can learn. They can achieve.

And, most importantly, they have worth.

And if you have a problem with that, I'll fight you.

(Again, I kid)

(Kind of)

Sermon Notes: Onesimus and JOY

Joshua loves church...always has. 

Unless it goes past noon...then all bets are off. 

I believe his exact words on the subject were: "I love Jesus...but it's time for lunch." 

Joshua has difficulty hearing in certain situations in life, but thanks to the sound quality in our new worship center, he hears pretty well in there. The Jumbotron is his best friend, because it makes it easier for him to keep up with all the words. 

Back in July, we sang the song, "You Are Holy." If you are familiar with the song, the men and women take turns singing, and there is a part in the chorus where the men and women are singing different words AT THE SAME TIME. Usually, this is highlighted in some way on the screen. This particular time, it was not. I don't know that it would've made a difference with Joshua. Most people figured it out. Joshua was not one of those people 

We're talkin' jaw set, bottom lip out, arms folded. There may or may not have also been some muttering of all the Downsy bad words he could think of. 

So, the guest pastor was preaching on "Understanding the True Meaning of Freedom." He was talking about the slave-turned-brother-in-Christ, Onesimus...from the books of Colossians and Philemon. 

Joshua likes to fill-in-the-blank on the sermon notes, and Onesimus was one of the answers. Joshua would look up at the screen, write a couple of letters, look up at the screen, write a couple more letters. So he started "o-n-e..." and scratched it out. Then, "o-n-e-i..." and scratched it out. Then, "o-n-e-s-i..." and as he looked up at the screen to get the next letters, the screen changed to the next point. And there was a repeat of the whole jaw...lip...folded arms thing. 

The only thing that would've made it worse for him, is if the preacher had posted a Hebrew or Greek word on the screen, and then expounded on it's original meaning. This happened one Sunday...and Joshua? Head.blew.straight.off. 

Jim always shares his notes with Joshua, so no worries...he got it all written down that day. 

There have been times, tho, when Joshua has had to take matters into his own hands. 

A couple of years ago, one of the fill-in-the-blank answers was "enthusiasm." I watched Joshua struggle with the spelling, and then put his pen down in frustration. I was just about to nudge Jim to help him, when Joshua picked up his pen. I watched as he slowly wrote, "J-O-Y" in the blank...and then looked up at us with his proud face. 

Enthusiasm = Joy. Yep. That'll do. 

It got me thinking about how we don't know the struggles going on with the people right around us. Big struggles, small struggles, little annoyances. Like the quote, "everyone you meet is fighting a battle you know nothing about."  

Everyone. 

Big, small, young, old, talented, struggling; black, white, red, brown, yellow; strong, weak, agile, feeble, deaf, blind, mute; healthy, jovial, challenged, athletic, smelly, LOUD; troubled, saved, sickly; beautiful, "ordinary," dirty, clean. 

I love this quote from Kelly Minter in "Wherever The River Runs," a wonderful book about bringing the Gospel to the forgotten people of the Amazon: "The least of these have the most to give." 

Yes, Lord. Give us eyes to see. 

"In fact, some of the parts of the body that seem weakest and least important are actually the most necessary." 1 Corinthians 12:22