Showing posts with label siblings of kids with special needs. Show all posts
Showing posts with label siblings of kids with special needs. Show all posts

Wednesday, December 7, 2011

Leading the way

When Polly was born and we learned of her diagnosis of Down syndrome, I grieved the child I expected. I didn't know much about Down syndrome. My mind quickly flipped to un-flattering images of a child sitting alone at recess,or a mother in her golden years walking slowly through the aisles of Wal-Mart so that her adult daughter, still a child, could keep up. Sadly, it took me a while to let my guard down and fall in love with Polly.

Polly's older sisters led the way. From the moment they met her, they dripped with love for her. They loved everything about her: "Oh, look at her pudgy little hands! Look at her wispy brown hair. Isn't she just the cutest little thing ever?" When we later explained to them that Polly had Down syndrome, and that she would need a little extra help doing things, they didn't bat an eye. "I guess it's good that God gave her older sisters then, huh, mom?" Elaina said.

Indeed.

Two years ago, when Evangeline joined our family, Elaina and Zoya took the lead once again. Elaina stayed with me for seven weeks in Ukraine until the adoption was finalized. She spent long, Kiev days tickling Evie and helping me take her outside for walks as we waited for the paperwork for the adoption to go through. Once again, I struggled, and my kids led the way.

Snapshot from today:

A toy came home in Polly's backpack today from Kindergarten. It's one of those birthday favors. You blow on it and it flings out in front of you. What fun! Polly figured it out right away, and I was thrilled that it wasn't one with sound.

A little while later while I was finishing up an email on the computer, I saw Polly bring her new toy into the kitchen. Evie was sitting up on top of the table (one of her new favorite perches in the house), kicking her feet off the edge.

"Look, Evie," Polly said, moving carefully, climbing up on the bench and then sitting down next to her on the table. "Look, Evie, it blows out," she said, and then promptly gave a demonstration. I fought the urge to intervene. Evangeline is easily spooked and she is not Polly's biggest fan. Most people love a happy, in your face five-year-old but Evangeline could do without. But I took a breath and waited to see what happened.

"You see that, Evie. It's red. It's pretty. It's fun." Polly blew on her toy again. "You like that, Evie. Do you?"

And the most amazing thing happened. Instead of reaching out and grabbing the toy. Instead of crying. Instead of getting the heck out of dodge (read: getting down off the table and away from Polly a.s.a.p.) Evie laughed.

She laughed.

Polly blew her toy again. Evie kept laughing. And for about five minutes they seemed like they were, I don't know what's the word?, playing together.

It was magical.

When Polly was born, I worried that she would feel alone but I learned quickly that her sisters would never let that happen. When Evangeline joined our family, I worried, I still worry, that we won't be able to reach her. Some days she is very far into her own world. And then today, Polly initiated a game with Evie and Evie, just a little, for a few moments, let her in. Polly had Elaina and Zoya to prod her along in her development, and now she is starting to lead the way for Evie.

The magic is now gone. Polly broke her toy because she kept twisting the blow out part. Evie stole all of Polly's pretzels out of her favorite ice-cream bowl. Polly is running circles around the house yelling, "hey, Evie, leave my snack alone" and Evangeline has climbed off the table. As I type she is eating pretzel bits off my, um, super clean kitchen floor. 

But I don't care. I'll take the five magical moments when I saw Polly work her sister mojo on Evie.

Sisters are the best therapists in the world.

Friday, August 26, 2011

Friday Feature: A Village of Comfort, by Morgan Gaking



Thanks to Morgan Gaking for this week's Friday Feature!

Have you ever been to a party where you didn’t really know anyone? Maybe you only knew the host and after saying hi you were left to stand awkwardly amongst strangers. But then sometimes there is that person. That person who notices you, all alone, introduces his or herself, and makes you feel comfortable and welcomed in a place where you felt just the opposite.

Young Life Capernaum is that person for teens and young adults with disabilities. Except it’s not a party their attending, it’s life. These friends with disabilities are often left as the outcasts of our society and even the church (shame on us). They are made to feel as if they don’t belong, don’t fit in, and aren’t welcome here on this Earth.

First thing I want you to do before reading any farther is watch this video, I’ll wait...

I was going to try and explain what Capernaum is myself but then I found that video and it pretty much stole the words out of my mouth, but then actually organized them in an understandable fashion.

This summer I had the opportunity to to travel to North East, Maryland with Metro Baltimore Capernaum for Young Life camp. Now for those of you who have experienced Young Life camp, you know what I’m talking about. For those of you who haven’t, you don’t know what you missed. I attended Young Life camp at Rockbridge as a WyldLife camper in middle school so when my parents said they were sending my 16 year old brother (who has Downs Syndrome), I simply stated that if he was going, I was going too! But I don’t think I could have ever expected to experience what I did. It’s so hard to describe and is one of those things you just need to go experience yourself to get the full effect.

Having a brother with special needs means that whether I wanted to or not, I’ve been around someone with a disability. I’ve always been fairly comfortable around those with disabilities and I had attended a few Capernaum club meetings with my brother (good old college kept me from being a regular attender) and one day camp, but I honestly was unsure of what to expect. Here’s a little run down of what you could expect if you waltzed into a Young Life camp during a Capernaum camp week.

You should expect to be welcomed with open arms. You’ll laugh within about 2.5 seconds after getting in the car or bus to head to camp. You should expect to not stop laughing till you return home. You’ll be the best friend of every camper in the cabin before you even unpack. There is a good chance you’ll be late for almost every meal, but it’s Capernaum and “this is how we roll.” (Did you spot in the video the green “This Is How We Roll” t-shirts in the video with the handicapped symbol on them? They say “Friends Don’t Let Friends Miss Young Life Camp” on the back.) Expect to learn new ways to eat food and creative uses of utensils at meal times. You should expect no experienced leader to be phased by this. You should expect to drink lots of coffee. If your not a coffee drinker you will become one because it’s the only source of caffeine at camp.

Be prepared to get your dance on all. the. time. You will dance into camp, into meals, during meals (be prepared to fist pump when the song signaling an announcement is played), out of meals, into club, during club (which includes a 30 second dance party, of course), out of club, to activities, at activities, in your cabin, and basically all. the. time. Expect to see some really creative forms of dancing. No one cares if you have two left feet, so expect to dance with all you got. You should expect to have to use some unorthodox methods to get campers back to cabins for bedtimes. You’ll be exhausted at the end of each day beyond belief.

Expect to experience life in a whole new way.

Expect to experience joy beyond belief.

Expect to experience God.

Expect to feel comfortable.

You are in a village of comfort after all.

Oh, and you will get pied. It happens.

On the last night of camp there was a camper who refused to pack. She didn’t want to go home. I tried to explain that we needed to go home because it was some else’s turn to come to camp but again she told me she didn’t want to leave. Then she told me why. She said all of her friends were here, peopled liked her and she had fun. She said at home she didn’t have friends.

I wanted to cry.

This place was a village of comfort for her. A place where she felt loved and accepted for who God made her. No one judged, no one made fun. No one made her feel left out and rejected. Instead she had friends, people who loved her. She was told she was made perfect in the image of God, she was not a mistake.

Her response also left a nagging question in my mind. Why isn’t the church this place for those with disabilities? About 20% of our population has some sort of disability, so shouldn’t your church population reflect that? Isn’t God for everyone? Is your church looking for a mission field, an unreached people group? Try your own backyard.

Someone asked me if it was weird or awkward being around so many people with disabilities all the time for such an extended period. To be honest, you forget about it after a while. We just all blend right together, each his or her own unique person, yet all a family at the same time. It becomes a bit of a norm and you just don’t notice anymore. Camp become a village. One where everyone is loved and accepted and their differences are not the first thing you notice. You’ll feel comfortable really quickly.


Working with some of God’s most unique creations is probably one of the most rewarding things you can do. Sure it’s exhausting, unpredictable, and sometimes chaotic, but that’s part of the blessing. If your looking for a new way to see God, I invite you to go experience Capernaum. If there is not a Capernaum club in your area then I invite you to go start one. You won’t be sorry you did. I promise.

Click here to find out more about Young Life Capernaum and search for a club.

To see a Capernaum Leader profile click here (he sums it up well).

To view more pictures from my camp trip click here.

The 2010 and 2011 Capernaum Baltimore Day Camp videos will give you another glimpse into Capernaum.

Morgan is a 2010 college graduate who is still searching for her dream teaching job. She has the privilege of sharing a home with a whiny Sheltie and a cat who acts like a dog in Baltimore , MD. Her parents and younger sister and brother also live there. Morgan enjoys photography and sewing in her spare time. She's also taken up snowboarding during the winter months thanks to her boyfriend of 6 years. You can find her on her blog or on Facebook.

Friday, October 22, 2010

EmmaLee McDonald (12 yrs. old) wrote this story, "Pete the Purple Pumpkin" in honor of her brother Toby, who has Down syndrome. WOW!

Pete the Purple Pumpkin

By EmmaLee McDonald

(Dedicated to EmmaLee's little pumpkin Toby, who happens to have Down syndrome)

There once was this purple pumpkin named Pete. Unlike any other pumpkin, Pete was purple. Every fall he hoped he would get picked. But every fall he didn’t get picked, he wondered why. He thought, “Sure I might be purple, but you can still carve me and eat my seeds.” The only thing different was his outside. People would look at him and then laugh. Every pumpkin thought that Pete was the kindest, sweetest pumpkin ever! They also wondered why Pete wasn’t getting picked. Now, Pete was getting older and the farmers said that if Pete didn’t get picked this fall, he would have to be thrown away. Pete didn’t want this to happen, so he hoped this fall would be different. Two days went passed and people only looked at him and laughed. Then, the next day, a little girl with a pink tutu and a tiara looked at Pete and said “I want this one.” Pete was so overjoyed. This girl loved Pete the most. Once this girl carved him, she placed him on her porch. That evening, she saw all of the neighbors on her lawn. Hoping they weren’t making fun of Pete, she ran out. Then, she realized what they were all staring at. It was a light brighter than any she had ever seen, shining from within Pete, without even one candle. It was a light that shown from within. Then, people came from far and wide to see this bright, little pumpkin. Just imagine what the world would have missed if Pete were simply thrown away. Even though people may look different on the outside, true beauty comes from within.

Big thanks to EmmaLee for sharing her story with me. Great job!

(EmmaLee is twelve years old. Amazing, huh?)

Leave EmmaLee a comment telling her how much you love Pete the Purple Pumpkin :).