Wednesday, March 21, 2012

World Down Syndrome Day

Down syndrome is essentially having three copies of the 21st chromosome (where most people only have two copies). Therefore, March 21st (or 3-21) is the day where we celebrate and promote awareness.

I never remember having a bad concept of Down syndrome, or of the people who had it. When I was in high school, one of my friends adopted a brand new baby who was diagnosed with Down syndrome. I really didn't remember a whole lot of differences. I remember she spit up on my floor, which isn't any different than any other baby I've ever met. I remember that when she got sick, she got REALLY sick. And I know that now, her mama is so proud of her, and of all that she has accomplished.

James is almost 19 months old now. As he gets older, his differences are slowly coming to light. Kids with typical development will generally walk by 18 months. We've now exceeded that. Kids with typical development will generally do away with bottles, and be fully on table food by the same age. Those are goals we have yet to meet. So...yeah, he's a little different. Sometimes people don't know how to feed him or play with him. Sometimes I feel awkward telling a stranger that the "baby" they see at the restaurant, eating baby food and babbling, is almost 19 months old. I feel like I need to put a disclaimer on there. But I don't. Because he is who he is

"If I could eat something different, I would!"

But there are also similarities. James has such a cute sense of humor. Peek-a-boo is not just about hiding and showing, it's about timing. The kid's going to be a comedian.

He also loves much. He's a typical little brother who adores his big brother (and swipes the good toys from him whenever he can). He thinks that his Daddy is the best thing since...well...ever. Seeing him lift up his arms to Jon melts my heart.

James swipes Caleb's brand new fishing pole.

He's a "snips and snails and puppy dog tails" kind of boy, with car and truck noises, grunts and high fives. He loves to swing. He loves to dance and clap to music. And he loves playing with balls. He even has his own game of fetch that he plays all by himself.

He also loves to please. If he's not receiving enough applause in his life, he openly asks for it. And man, does he do things that earn our applause. James works hard at his play, three times a week. He spends four hours a week in therapy, and he works and works those entire four hours. Sometimes he loves it, sometimes he hates it, but he pushes through it all. At the end of each session, he crashes out in a long nap. He works out more (and harder) than his mama does, that's for sure!

My own history never led me to believe that kids with Down syndrome should be treated any differently. We have not found anyone who treats James differently. What we have found is that people don't always understand. Considering that only 30 years ago, the life expectancy of a person with Down syndrome was 45, and that person was generally institutionalized, it's understandable that people don't realize what promise a child with Down syndrome has. Only God knows what the future holds for James and for others like him!

It's sobering to realize that people make sweeping judgments based on their misunderstandings. Did you know that 9 out of 10 babies that are prenatally diagnosed with Down syndrome are aborted? Doctors, mothers, family members, even Google searches--can give dire predictions about the child's future.

James's 19 months have not been easy, but it's rare that I've even noticed that. What I have noticed is what a supportive family we have, what a church we have who truly lives like the body of Christ, what a different mom I've become with schedules and prescriptions and appointments kept straight in my mind (and on my calendar!), what neat people we've met along the way, and what an amazing addition to our family James has been. This little guy has stolen our hearts.

Let me introduce you to a couple other little guys. These are little boys who have Down syndrome, and who are in orphanages in other countries. The care for them is often minimal, and any major medical interventions are put off until their adopted families can take care of it.

Xander. This little boy is a year older than James. He caught my eye a long time ago. He reminds me so much of James before his surgery. That same pale face. The description of "not very active" and "explores the environment with his eyes." This little boy needs help!

When I first saw him, the photo shown was of him as a baby. He was making a face that James likes to make. I pray for this little boy, that he will find a home soon.

John Mark. Here's a little guy only a month older than James. What a cutie pie! From his description, it sounds like he's quite the people person. The family who adopted him would be adopting a little bundle of joy.

I am becoming more and more convinced that--as God's adopted children--we are called to adopt. Perhaps you've felt the same. And maybe adopting a child with special needs sounds a little daunting, but let me encourage you! "Anything you have done for the least of these, you have done for Me." Who knew sacrifice could be so fun?

Maybe you're not interested in adoption. Your quiver is full, your years are many, ... whatever the reason. I encourage you to be informed. Recognize the issues (like the new MaterniT21 test) and fight for the rights of these children. Also, reach out and help someone you know who may have a child with special needs.

Today is World Down Syndrome Day. Celebrate by wearing blue and yellow, hugging someone with Down syndrome, getting adoption information from Reece's Rainbow, or maybe letting people around you know that you love someone with Down syndrome. Thanks for loving James.

Sunday, March 18, 2012

Sometimes that's just how Motherhood is

You know that joke about getting upset before the dad about blows a gasket, the mom shrieks to everyone, "Just shut up and get dressed so we can go to CHURCH and learn about the LOVE of JESUS!" And we all laugh at the joke because it's so true!

Sometimes that's just how it is.

I got up first this morning, which is usually a good sign that we'll be on time. I was out and dressed in time to get the boys dressed before breakfast. Everything is going well so far! Jon heads off to church early.

Breakfast is done, and no one ruined their church clothes with food! All right, Caleb spills milk on his shirt, but I figure it'll dry by church time. I excuse Caleb and set James down to play while I dry my hair and get my makeup on. Occasionally I check on them, or listen for the telltale "quiet" that means they're doing something they shouldn't. I pick out a nail polish color so I can wear sandals with my dress.

Somewhere between foundation and eye shadow, Caleb says he needs to go potty. Fine by me. He's big enough to do that himself. I meander towards his bathroom, though, because he's finally (finally!) not using the toddler potty seat, and I wanted to make sure all would go well. I find him struggling with his pants, and then he realizes he waited too late. He couldn't hold it any longer. I dash in and get him over the potty, but it's futile. Pants, undies, socks. All need changed. Might as well change the milk-spotted shirt, too. In my mind, I knock out my two-coat pedicure and decide I can still throw on one coat of polish and be okay.

I pull out the clothes he will need (which he can put on by himself), finish my makeup quickly, and head over to find James. He seems fine. But then I notice a nice spot of spitup on the rug. There's a telltale piece of construction paper that James found, and which evidently he tried to eat, which caused him to gag and spit up. Nice.

I head to the utility room to grab cleaner. Caleb comes out of his room triumphantly: "Mommy, I did it!! I got my undies on all by myself!!"

"Hooray for Caleb" (while inwardly I give an exasperated sigh) "Now see if you can get your pants on, too!"

Rug clean, I decide I might as well change that suspicious-smelling diaper of James's, since we're getting awfully close to church time. I also admit defeat regarding the polish, and pick out a pair of closed-toe shoes.

When I get in the boys' room, Caleb is still only in his undies. He's "building something" for me. James resists his diaper change, insisting on rolling and twisting, throwing his clothes to the floor, grabbing the lamp, the diaper, whatever he can find.

It's crunch time. Or Mama Snaps time, however you want to put it.

"NO James! NO! Caleb, get. your. clothes. on. now. It's time to GO. James! STOP IT. UGHHH! Y'all are DRIVING ME CRAZY this morning!"

I stretch the diaper into place, fetch James's pants from where he threw them, and yank Caleb's clothes on. I plop James in the walker and run and grab my jewelry and a sweater, make a bottle and a cup for the boys, and find my Bible and the boys' church bag. Then I scoop up James, recover the sock and shoe he pulled off, grab Caleb's hand, and we finally make it out the door.

Last night I prayed that I would enter church with the expectation of worship.

This morning I was just thankful to enter church.

This morning was a little crazier than most...but not by too much! My older child likes to la-dee-da through life (I have no idea where he gets that from), and my younger is trying to exercise some independence in the world. So it just happens. And it doesn't really bother me too much, except in the moment, and on those days where I'd really like to get where I'm going on time. My crazy mornings remind me of my creative first-born, and my second-born heading into the terrible twos in a very "typically-developing" way. I am thankful for these things! God has blessed me in so many ways!

Sunday, March 11, 2012

Caleb's First Rainbow

I stepped out of the sanctuary tonight, and was met with the most beautiful rainbow I may have ever seen. A full rainbow, and even another full rainbow above it, though it was much harder to see.

I rushed in to the nursery, grabbed Caleb, and dragged him outside to see it, as well.

 He was delighted. In typical Caleb style, he said, "It's wonderful!" He laughed and laughed, and yelled out to everyone leaving church, to make sure they had seen the rainbow as well.

This was the view in the other direction. Equally beautiful!
 We waved goodbye to the rainbow as it dimmed. Caleb loves rainbows, but I don't think he'd ever really seen one before, especially not one as clear and beautiful as this one!