Julianna, Unlimited

We made the decision on the spur of the moment. “Julianna, do you want to go to Children’s Liturgy? Like story time at church?”

“Yah!” she said happily, and Alex, beaming with pride, led his two younger siblings out of the church with the rest of the kids.

He returned fifteen minutes later, wearing that long-suffering expression that means little siblings are a pain in the neck. “Did Julianna try to run away?” I whispered.

“Well, a couple times. I had to take her to the bathroom.”

Oh, my. That’s way above and beyond the call of duty for a seven-year-old.

Big surprise: the next week, Alex decided he had outgrown children’s liturgy. So I followed the other two at a distance, giving them the space to go on their own. I sat at the back and kept an eye on Julianna. (Why the 5yo, and not the 3yo? Hm. Keep reading, and thou shalt understand.)

For a while, she did great. But then she saw two boys crawling under the TV cabinet and thought that looked like more fun than stories about Jesus. The leader redirected her, and she settled back down. Two minutes later, she clambered to her feet and began circling the outer rim of the crowd, bopping people on the head: duck…duck…duck…duck…

I intercepted her before she reached “goose.” I made her sit down, and I retreated…but not far. Three minutes later, she looked around, stood up, wiggled her bottom, and plopped down in the lap of some poor little girl two years younger than herself. By the time I got there, the girl had the shell-shocked look of one whose personal space has been summarily violated.

Julianna sat with me for the remainder of Children’s Liturgy.

Aside from the speech delay, the thing that sticks out the most about parenting my daughter with Down syndrome is how difficult it is to teach her limits. She doesn’t “get” it. No, I take that back. She understands that you have to take turns with toys. But when she sees something belonging to an adult, or something left unsupervised, she thinks it’s free for the taking. If she’s thirsty, she’ll go grab someone’s glass, even if it’s a complete stranger. If she sees someone’s purse (oh, how she loves purses…thank the Lord I don’t carry one!), she will stealthily and swiftly empty its contents to the far corners of the room. She chooses random people in any crowd and gives them huge hugs.

Adults deal with it well. They think it’s cute, and sometimes I think she has a sixth sense about who most needs something. How else to account for all those touch points?

But kids are another matter. Kids don’t have the understanding and tolerance their parents do, because those are learned skills, acquired values. I can hardly fault them for regarding with suspicion a person who steals their food, and then the adults yell at them instead of her. She doesn’t exactly fit in anywhere. She’s too old to play with the toddlers, and she can’t keep up with the big kids–those her own age. They tolerate her presence, they take her in stride…but she’s clearly not a part of the group.

It is sad, and unfair, that those I most want her to be able to connect with are the ones least equipped. Yes, it’s great that she creates warm fuzzies with people who can influence her larger future, but that’s a global thing. As far as she’s concerned, her peers are more important.

Understand, I’m not going for a “woe is me” theme. Yesterday I got to meet several self-advocates and teens with Down syndrome, as well as children of all age ranges. I’m still on a high, seeing the community I knew had to be in my area, even if we couldn’t find them for the first several years. But I have to keep it real, too!

Later this week, when I’ve fully processed everything, I might share more about our DS group kickoff event.

Published in: on May 7, 2012 at 7:50 am  Comments (6)  
Tags: , ,

Weekend Carnivals

It’s another weekend and time for another Sunday Snippets, hosted by the awesome book blogger, RAnn of This, That & The Other Thing.

This week at So Much To Say, So Little Time, I…

…re-posted some thoughts on prayer

…reflected on how we can’t divorce concern for others’ opinions from our own self-identity

shared a cuddle with Julianna

showed off my class clown in training

scolded a driver

I also tried to sneak a little TOB into my fiction offering this week. I’m not sure it worked, really. However, I’ll just blame the kids pulling on my arms and legs and shouting in my ear while I wrote it. That’ll do, won’t it? :)

It is also the first Saturday of the month, so I’m linking up with Elizabeth Esther’s Saturday Evening Blog Post carnival, with my favorite post for the month of April, for which I chose to share “Core.”

Published in: on May 5, 2012 at 3:13 pm  Leave a Comment  

Fiction Friday: Body Language

Photo via Wiki Commons

His crossed arms answered her question before he spoke. “I’m sorry,” he said. “There’s nothing more we can do.”

Molly placed her hands palm down on her thighs and rubbed down her legs, then crossed her arms and slid her palms up opposite arms. “Well,” she said. “Well. In the end, it comes to us all, doesn’t it?”

“Mrs. Folk?”

She looked up, met his gaze. “I’m all right, doctor. It’s just…it’s so beautiful. I never realized.”

“What’s so beautiful?”

She blinked. “My body.” She held out her hands, opened and closed them. “Look at that. Until today, all I saw was freckles and calluses. But think of the meals these hands have made. The babies they’ve rocked. The rows they’ve hoed.” She shook her head. “It’s just beautiful, that’s all.”

Dr. Wheeler ran his tongue over his lips. “Mrs. Folk, would help if I brought in someone for you to talk to?”

Molly expelled a sound, one part sigh, one part laugh. “You think I’m in shock, don’t you?”

He raised his eyebrows and tilted his head. “Well…”

“What kind of people do you normally see?” she said, exasperated. “You act like you’ve never told a woman she’s going to die before.” Molly fiddled with the sloppy hem of the examining gown, fat and skinny side by side. “At times like this, you look back on your life. You wonder if you’ve done everything worthwhile you could. If you’ve done anything worthwhile at all.”

He clicked his pen three times. His Adam’s apple bobbed. “You’ve done worthwhile things, Mrs. Folk. Think of the library, and the scholarship.”

“Oh, I know.” She waved it all away. “I’ve used my money for good. But I never really did anything. Myself–with my own body. My own hands, my own feet.” She held them up, flexed her toes. “Just marvelous,” she said softly. “I never even paid attention. I could have done so much more with all this.”

He cupped her elbow and ducked his head to meet her gaze. “There’s still time, you know.”

She looked up then, and he was relieved to see at last the shine of tears in her eyes. “You’re right, doctor,” she said. “Six months is long enough to make a difference.” She drew a deep breath and smiled. “I think it’s time I join my boys at the mission in Haiti.”

Write On Edge: Red-Writing-Hood

Published in: on May 4, 2012 at 8:14 am  Comments (7)  
Tags:

Note To The Driver of the Red Sports Car (a 7QT post)

Highway

Highway (Photo credit: bibendum84)

Note to the driver of the red sporty car on the interstate:

1. I have three small children in my van, and it’s raining. Hard. I can barely see out my windshield.

2. I am going two miles per hour over the speed limit. The truck in the right lane, six car lengths ahead of me, is going the same speed as me and spitting up an impenetrable wall of mist.

3. I am not going to pass it. Refer to #1.

4. I am not going to drive in its baffles. Refer to #1.

5. I am not moving out of the left lane, no matter what gestures you choose to throw at me upon passing me.

6. Besides, you don’t even have your lights on, Mr. Arbiter of the Rules of the Road. In this rain, you became invisible before you cleared the truck.

7. I get your irritation, but that’s too bad. My family’s safety is more important than your need for speed.

Sincerely, the mom in the blue van.

(BTW, I have a fiction prompt up today too, if you’re interested.)

7 quick takes sm1 7 Quick Takes Friday (vol. 171)

Published in: on May 4, 2012 at 5:18 am  Comments (3)  

Class Clown In Training

Remember this picture?

When Christian saw this picture, he shook his head and said, “I’m telling you, we’re gonna have trouble with that one.”

That was a year ago. When Nicholas was barely two years old. Now just imagine what life is like with this child at three.

“Mommy, I a goofball,” he says to me as I’m putting him down for nap, his eyes dancing. It makes me want to chew him to pieces, which frankly is a much nicer desire than the desire to pull my hair out, which follows me around most days as he refuses to eat and turns everything into a battle with me and with Julianna.

In the post-baby fog, we got to a point of running through rote prayers without catechesis or depth, and just this week, I’ve taken a deep breath and stopped settling for “good enough.” So we’ve been taking time to do petitions and thanks this week. Nicholas doesn’t quite get it. “I pway for Awex and Juweanna and Michael and Mommy and Daddy and the pwaygwound,” he says, pointing around the room.

“You want to pray for the playground?”

“Yeah!”

“Okay, what do you want to say thank you for?”

“I want say thank you for my ear infection.”

(Um, kiddo, I don’t think you’ve quite got that distinction clear.)

And then, the Mischief Eyes come out. “And…I want say thank you for PICKLE!”

Christian, who is flopped face-down on the bed, raises his head and looks at me as if he’s not sure he really just heard what he thinks he heard. And then starts laughing.

Perhaps I need to explain. I’m sure everyone is familiar with this book:

Front cover

Front cover (Photo credit: Wikipedia)

The last page, with the list of all the junk food he ate? It takes us five minutes to finish that page, because the kids point at every food, sometimes in order, sometimes not, while I say them over and over. And I always yell “PICKLE!” because it makes them laugh.

Yup, that’s my son, turning bedtime prayers into an opportunity for clowning around.

I have to echo my husband. We’re gonna have trouble with this one. ;)

Published in: on May 3, 2012 at 7:05 am  Comments (4)  
Tags: , ,

When A Non-Cuddler Cuddles…

When a non-cuddler cuddles on a cool, wet spring night, it’s Heaven.

*

special needs wordless wednesday

Published in: on May 2, 2012 at 6:25 am  Comments (6)  
Tags: , ,

We Are Not Rugged Individualists

Photo by Melvin_Es, via Flickr

A couple of weeks ago, I posted a piece of fiction called “Makeover.” It’s about a woman whose life is a mess–grown son dead, marriage in shambles. When she sees her reflection in a storefront, she realizes she doesn’t recognize herself anymore–and she goes to do something about it.

The most thought-provoking comment I received on that story raised the question of whether her desire to change was for her own sake or for her husband’s. In the post-feminist era, we women are always being urged to prioritize self. We should take time for our own interests instead of impaling ourselves on the Mommy Martyr stake;  weight loss and beauty regimens should be for our sake, not so we look good for catching (or keeping) a man. If we consider others’ preferences or opinions, it’s almost as if we’re betraying ourselves.

There’s a certain truth to this. It’s all too easy for us to define ourselves the way others see us, and a healthy sense of self-respect depends upon independence of mind, the strength to hold our convictions and not be blown about on the vagaries of other people’s opinions. Yet that’s not the whole picture. In any healthy relationship, both parties have to give way to each other. If I kept my opinions to myself and took my husband’s as Ye Ultimate Truth, it would be bad news; my husband is a flawed human being in need of growth that sometimes can only be pointed out by someone else.

But so am I. If I consider any decision that accounts for his preferences and observations as tainted…well, that’s just as unhealthy as the opposite extreme–not only for the marriage, but for me as a human being.

It seems paradoxical that to find ourselves we have to empty ourselves. But as human beings, we have a huge blind spot where self is concerned. We’re too close to measure objectively, and if we try to go it alone we’ll find ourselves perpetually dissatisfied with the world, seeing everyone else’s splinters through the moat in our own eyes.

Quite apart from companionship, human beings need each other. We are made, hard-wired if you will, to connect, but those connections are only possible when we allow someone else to become part of us. We are not autonomous.

In childhood, my sense of self was tied to family, then friends. In adulthood, it is tied to my husband and my children, my Church and to the larger community within which I work–you, my readers, my friends, the larger readership I reach through magazines and other projects. I make my decisions on what to write based on a give-and-take between my wishes and what I know about you.

Perhaps, then, it’s time we laid to rest the idea of rugged individualism. We need each other; we always have, we always will. Trying to pretend otherwise undermines the very connectedness that we need to grow and be healthy and whole.

When You Pray…

It’s been a crazy weekend, and today’s slated to be an even crazier day, so I’m pulling one out of the archives today. Be back tomorrow with fresh thoughts!

***

Pray without ceasing.” I Thessalonians 5:17

The Angelus by Millet ca 1857

I’ve known a lot of faithful people in my life. And one of the most striking things I have noticed is that it’s frighteningly easy to abuse faith. To turn it into an idol of its own.

Maybe I should be more specific. It’s easy to abuse religious practice. Like prayer, for instance.

I’ve known people who substitute prayer for action. I’ve known people who go for quantity of words, as if they think if they go on long enough, they’ll beat God into submission. I’ve known people who go for flowery language, thinking it makes their prayers more important. I’ve known people who use prayer, consciously or unconsciously, as a way to lecture other people in the room. (I should add that at least once in every category above, “people” refers to me.)

“Some of God’s greatest gifts are unanswered prayers.” Garth Brooks

And I’ve known people who have bought into the idea of the unanswered prayer. This is one of my biggest pet peeves, because there is no such thing. That lesson, learned in my youngest elementary school days at Catholic school, still forms my world view. God answers every prayer. Every one. But sometimes, the answer is “no.”

And sometimes, the answer is “not yet.”

“If I really wanted to pray I’ll tell you what I’d do. I’d go out into a great big field alone or into the deep, deep woods, and I’d look up into the sky – up – up – up- into that lovely blue sky that looks like there’s no end to its blueness. And then I’d just feel a prayer.” Anne Shirley

At some point in my life, someone offered this “formula” for prayer:

First praise, then thanksgiving, and then (and only then), petition.

I struggled for years with the difference between praise and thanksgiving, but finally my daughter taught me the answer to that one.

The trouble is with that last bit. The petition bit. The part that overwhelms prayer for most of us.

The trouble is that we grow up with a wrong-headed idea of what prayer is supposed to do. Prayer isn’t about changing God’s mind. I mean, do you REALLY think you’re going to change the mind of the maker of the entire universe? If that was even possible, I’d lose my faith instantly; who can depend on a God that fickle?

No, prayer is about changing me. It is a lesson in humility, an opportunity to stretch my soul by bending my will to someone else’s. It’s about shifting my attitude from what I want, what I need, what I fear, to what God wants. To what God is asking of me.

That kind of prayer is a lot harder. But it’s also liberating.

I learned the power of this prayer during three years of infertility, when all my life was consumed by the desperate desire for a child. It was such a bruising experience, to pray two dozen times a day, every day for three years, for the same thing, and never once to hear a “yes” in reply. That is spiritual exercise of the most powerful kind. I thought I would never know the reason why God said “not yet” for so long. But in time, that question was answered, too.

“Pray without ceasing.” I Thessalonians 5:17

When I was a kid, I used to hear that quote and shake my head. What a boring life. Are you supposed to just live on your knees? But now I understand that life itself can be a prayer. It doesn’t have to be formal. It doesn’t have to be eloquent. It doesn’t need words at all. It begins with praise, it continues with thanksgiving, and ends with “Thy Will be done.”

And when I manage to live up to it…it works for me.

Published in: on April 30, 2012 at 5:12 am  Leave a Comment  
Tags: , ,

Sunday Snippets

After a crazy two days of cleaning in preparation for a first grade birthday party this afternoon–wow. I come to you feeling a bit like a zombie as I share my week’s scribblings with RAnn’s Sunday Snippets roundup:

Nicholas’s illness meant that Michael and I had a beautiful visit to my old parish stomping grounds last Sunday.

The Trouble With Absolutes–a parenting post that applies to a lot of other areas of life, too

Julianna got a new bed this week, which she adores, and I shared pictures.

Alex had two moments on the blog this week: a sad moment at baseball and thoughts on his beautiful heart, on the occasion of his seventh birthday.

Published in: on April 28, 2012 at 5:31 pm  Leave a Comment  

I Love That About Him

My baby, the child of my heart, turned seven this week. With the literalism of a first grader, he insisted he wasn’t seven until 6p.m. On the way out to the playground, his teacher began to tease him that maybe we shouldn’t have a birthday party after all, but halted mid-sentence. She knows my boy is a sensitive soul. A few hours earlier he had involved the whole class in a discussion of unkindness on the baseball field.

When we came in the door of his classroom that afternoon, Alex greeted us with a passion partly due to the surprise cupcakes we were carrying, and to our presence in his Other World–but also just because that’s who he is. Maybe all children are like this with their own families. I don’t know. All I know is that every day, in almost every interaction, I can see Alex’s love for his family, particularly his little siblings. His fierce adoration can’t be contained. You can see how much their presence completes him.

It occurs to me that this is the essence of my firstborn: he’s 100% heart. Although he’s got a good brain, his thoughts are formed by his heart. I love that about him. He watches the news, worries about the people and situations he sees. Perhaps worry isn’t the right word. He lets it go, but returns to it later, turning over the pieces in his head, trying to make sense of a crazy world. Weather, politics, crime, pop culture–he process his world through a mind formed by his heart. He’s old for his age, that way. It lays him bare to the earthier, more worldly souls among his peers.

He rides himself hard, gets frustrated, and takes criticism deep within, justified or not. Among his peers he often looks frustrated, a little lost amid the alliances and unspoken understandings the other kids get instinctively.

But here at home, among his family, he knows who he is. He doesn’t do as many activities as his peers, and he doesn’t have as much Stuff as many of them do, partly because we choose to live differently, but partly because there just isn’t enough to go around in a family of this size. That is one reason many people don’t have more than the standard two children–this feeling that they’re doing wrong by their kids if they have to split the finite resources of the family more ways. Yet I hold up Alex against that fear. His life is formed and defined by love–by people, not by accoutrements. And he’s such a beautiful soul.

I love that about him. God grant he remains that way into adulthood.

Published in: on April 27, 2012 at 7:46 am  Comments (1)  
Tags: , ,
Follow

Get every new post delivered to your Inbox.

Join 326 other followers