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.


  1. Happy DS Day, Norvell family. Thank you James for adding a special light in our lives!

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  3. Seeing Caleb and James together reminds me so much of my boys. Benjamin adores his older brothers and thinks they are the funniest people on the earth! I loved your post. Thank you for making us more aware.

  4. Wonderfully written post! Please post a link on FB.

  5. Aw, I love this! And wow, every now and then I catch a glimpse of Caleb in James in the photos and videos!


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