“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.

*

It was quite the adventure, involving two trips to the store (we thought we had a mattress in the closet, so we bought a box spring. And upon assembly, discovered we were remembering backward) and throwing it together after bath, before bed. Julianna was so excited. “De-beh!” she shrieked, pounding Tink with one finger, and with a little repetition, we got as close as “Tee-beh”.

It was the first time in, uh, her LIFE, that we didn’t have to come in and put her covers back on her during the night. And now, coming into that room just makes me happy.

She even consented to share with Alex…briefly.

 Speaking of Alex…today is his 7th birthday! How many happy birthdays can we get in the combox for him?

But I have tons of pet names for the kids, at least when they’re little. Alex went by Mr. Bug, and I’ve also used punkin, boy-o-boy, and variations on munchkin (munchy-girl, munchy-boy, munch-baby, smunchkin) for babies and toddlers.

But nobody, and I mean nobody, has as many names as Julianna:

• Miss Pooey, a title bestowed by Grandma Basi, and its cousin, Missy-poo. This seems to be the name off choice when she’s getting on and off the school bus.
• Miss Sneaky, AKA Superspy. We first gave her this name as a joke, because when she learned to crawl, she smacked her hands and knees so loudly with every step–she needed hat much physical input. To our great chagrin, she has grown into it. Taking her to play outside or shopping anywhere is an exhausting mental exercise, because if you turn around–you know, to choose a head of broccoli–she pulls a vanishing act. And she does it soundlessly. As an example: one day I was nursing Michael when I realized I hadn’t heard a peep from Julianna in half an hour or more. I ran from my room on the second floor all the way down to the basement, checked all her usual haunts, shouted her name. No response. I was rushing outside in a panic when I heard Nicholas saying, “Wake up, Juweeanna! Wake up!” I ran to him and discovered Julianna, asleep in Michael’s crib. Yes. The crib.
• Pretty girl. Self-explanatory.
• Julianna Banana…occasionally. When we’re feeling silly.
• Sweet pea, girly-girl (I’ve never actually called her “half-wildebeest,” though I often think of her in that dual way.)
• Ju-Ju-bee, her Aunt Laura’s pet name, and one I just love.
• Then there are the various stages of little ones learning to say her name: Ju-ju, Nana, Jujunana, Junanna, Juwee-nanna, Juweeanna. Right now she pronounces her own name something like Ooo-lah-uh.
• And of course, when she’s in trouble, her compound name gets split decisively in two: “Julie-ANNA!”

And although she often makes me want to pull my hair out, I still love her madly.

*

*

“There is magic in that extra chromosome, I tell you. Magic.” –Kelle Hampton

I don’t know how she does it.

Everywhere she goes, people see her.

This seems like a stupid thing to say–of course people see my daughter. But in our quest-for-the-perfect-body-without-sacrifice, grab-a-Botox-shot and erase-your-wrinkles world, we don’t really see people with disabilities. Our eyes slide past, because we’re uncomfortable, or because we don’t want to be rude. Even though ignoring is its own form of rudeness. We build walls between Them and Us. (And I do mean “we.” Even now, I sometimes do it, too.)

Julianna is a one-toddler wall demolition girl. Somehow, she walks right through them.

If you don’t have a connection with Down syndrome, this post is one more set of syrup-sweet platitudes. I used to skim, or skip things like this altogether. How can I make you see my girl the way you see the children of every other friend, neighbor or acquaintance?

Aside from the ordinary triumphs of each dearly-bought stepping stone, these are my favorite things about Julianna:

Sympathetic cry-er (you know…as soon as a sibling starts wailing, her face screws up and she follows suit).

Bibliophile extraordinaire. She’s not picky. Given the chance, she’ll choose Child of the Moon or Brown Bear–better yet, a scrapbook–but if they’re not available, she goes for whatever’s close at hand. Batman, Lego instruction manual, hymnal, phone book (I kid you not).

Mommy wannabe. Right down to sitting in front of the computer and making a Really.Big.Mess.

Tomboy and girly girl–a girl after my own heart. Alex can’t stand getting dirty. Julianna? Glories in it. Butt planted in the creek. Mud on the legs. Fingers in the mouth.

Miss America in training. Walking is her favorite activity, best enjoyed when pushing a toy. But if we’re someplace where there are people, but no push toys, she waves. Loudly. What do I mean by that? I mean she tears through the available space, waving and yelling, “AAAAAAAAAA” (translation: “Hi hi hi hi hi hi!”). And everyone smiles.

She’s a button-pusher, “for good or for evil,” as Gandalf would say. If she wants to see you ticked off, she knows just how to do it. In two seconds. But when she wants warm fuzzies, she can do that, too.

One word: Hugs.

Oh…my…goodness. Nothing so heavenly as those plump little arms…squeezing. I’ve waited three years for that sensation. I get goosebumps.

The not picky audience member. She loves music. Any organized sound will do. Jackhammer. The roll call bell at the Capitol. As long as it’s not so close that it deafens, she cheers.

And she does it for “yay,” too. Yay for the food. Yay for Daddy’s homecoming. Yay because everyone else is. She doesn’t need to understand why she’s applauding. She just does. It makes her happy. And at the baseball game, when she claps and yells for five seconds longer than everyone else…people see her. And smile.

But my absolute favorite moment was a school bus moment. One afternoon Miss Holly, the driver, told me that the bus barn was moving Julianna to another driver’s route in the mornings. “Okay,” I said, “great, thanks.”

“Well…” she said, and when I saw the crestfallen look on her face–crestfallen for losing my daughter from her afternoon–my heart went, thump.

Oh, my beautiful angel. What wonders will God work through you?

Alex collapsed into giggles, which made me chuckle. He has such an adorable laugh.

But at the end of the table, “stern” turned to “severe.” “You DO NOT LAUGH AT YOUR SISTER,” Christian scolded.

Alex’s face collapsed, and I leaped in. “Christian, he wasn’t making fun of her.”

“But this is where it starts.”

“But this isn’t like that,” I said. “We laughed at Nicholas, too, when he said cute things learning to talk.”

We’re entering a brave new world. For the first five years of her life, Julianna has been protected. At all times she’s been shielded from all the potential unkindness of the world by the presence of her family, except when she’s at school–a school walled off and dedicated to children like her. But in a few months, that’s all over. She’ll walk unprotected into a huge school full of kids who have never seen anyone like her, and who, for better or for worse, will have imbibed their parents’ attitudes (like the bozo I argued with all day on Facebook a few weeks ago, who refused to accept that the colloquial use of the word “retard” is demeaning and hurtful to those who actually fit the description, and wouldn’t admit that said usage came into being as an insult directly and knowingly comparing someone you don’t like to someone like my daughter).

Every time I fret about this, friends remind me that little ones are very open-minded. But the mental image of kids making fun of my kid is very strong, based on some conglomeration of memories whose images have become indistinct in detail, but whose essential truth I don’t doubt. I don’t doubt that at some point in her childhood, Julianna will be laughed at, made fun of, made to feel less-than because of her extra chromosome.

And yet.

Not all laughter is cruel. Human interactions are complex things. Every week at choir practice, we banter, we poke fun at each other, we laugh together at each other’s weaknesses. To suggest that no one can ever laugh at Julianna is to deprive her of the richness of these loving exchanges. If no one is allowed to laugh when she says something funny, that sets her up as different, as Other, as surely as making fun of her does.

Laughter is appropriate and loving at times, cruel and soul-killing at others. It’s all in the intention. But how do you teach a child the difference? It has never, will never, would never occur to Alex to make fun of Julianna. He adores his sister, even though she does drive him nuts sometimes. He’s grown up so integrated with life with special needs that he doesn’t even get why Daddy reacted as he did. Alex laughed because  was reacting as a family member reacts to someone he loves. Yet he needs to be aware that cruelty exists, and that he has a responsibility both as a human being and as Julianna’s brother to stand up and call people down when it occurs.

I have no idea how to communicate this without making him hypersensitive, which is also contrary to my goal of making a wall-less world for my daughter and those like her. But somehow, we have to try.

We registered Julianna for kindergarten this week. Can you believe it? I’m having trouble. I mean, it seems like she’s been in our life forever, certainly long enough to be starting school…but there are things you tend to associate with a child entering kindergarten. Like, I don’t know…speech!

___2___

I shouldn’t make it sound like she doesn’t talk, because she does. In fact, she comes to me these days and issues a long stream of gibberish that very clearly means something…I just don’t know what. When she started it, we thought it was incredibly funny and cute. Now I’m looking at things differently. “Julianna, I don’t understand what you’re saying,” I tell her. “One word at a time.”

___3___

For two nights, I spent my after-the-kids-are-in-bed time filling out forms. You should know, also, that my handwriting (so my husband says) is illegible. Being sensitive about this, I was writing ve-ry-slow-ly. And I was ready to spit nails by the time I was done. How many times does the school district need me to fill out Julianna’s address? I filled out her address on NINE DIFFERENT FORMS. And TWO of them were about who she lives with. I mean, really, people. It was a rude awakening to the difference between private and public school procedures, let me tell you.

And she has her last shots this morning. I tried to prepare her last night, but it’s hard to know what she “gets.” Alex is off school, so we’re going to the doctor’s office with four children.

___4___

When RAnn, over at This, That, and the Other Thing, interviewed me about my Lent book, she asked what activities I had planned this year. I told her with the infant in the house, we were going to have to take it one week at a time. Well, that’s what we’re doing. Perhaps it will help everyone who thinks just because I write books about celebrating seasons with children, that our house is full of well-organized, blissful family catechesis. Um…no. My family is the perfect illustration of why we need books like mine. :/

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I was going to write another Quick Take on that subject, but it occurs to me that maybe I need to write a post on that topic all its own.

___6___

Speaking of all things faith, this is evidently “Evangelization Week” in our neighborhood. Tuesday afternoon it was two young girls asking if we had a church home. Thursday just before noon an older lady rang my doorbell with literature. I groaned inwardly and tried to tell her kindly that we’re well evangelized, and quite familiar with the Bible, but she really, really wanted to give me a flier–four pages, full color. “Did you know the Bible says ‘they will beat their swords into plowshares?’ she said with an earnest smile. “Do you believe that will happen?”

What a question! Caught between a desire to get rid of her and the inability to lie, even by omission, I swallowed a whole lot of thoughts and stuttered something that made no sense but made it perfectly clear that I was a heathen, just as she thought. “Well,” she said, “the Bible said it will happen, so we know it will.”

Yes, I thought. In Heaven.

___7___

No matter how much time passes, I cannot get over the fact that in a house with nearly 3000 square feet, everybody has to inhabit the same room. A few days ago, Christian and I prepared dinner in a twelve-foot-square kitchen with one child pushing the empty bouncy seat in front of the refrigerator door, one child building a marble run in front of the pantry door, and one child trying to drop marbles down it before it was finished. Just imagine that traffic jam.

Have a good weekend!

Image via Wikipedia

It was one of those days.To wit:

Michael would not consent to be laid down…all day. Imagine. Every time I tried to make lunch, use the bathroom, or aid another child in a self-care task, I had to endure heartbreaking wails.

Nicholas kept whimpering pathetically, “I want you, Mommy!” (translated: I want to sit on your lap.) Refer to my last.

Nicholas and Julianna bickered, took toys from and pushed each other, causing periodic eruptions of screaming.

I returned to the computer after, I don’t know, changing a diaper, to find a screen display completely rearranged and a mouse on its maximum sensitivity. The screen was just tiled like a triptych–not a big deal–the point was that Nicholas has been handling, moving and breaking everything in sight lately, and he had no reason to be messing with the computer at all. I yelled at him to JUST STOP TOUCHING THINGS, and he stuck his lower lip out and pouted (this kid’s got the guilt routine down, I’m telling you) and whimpered, “I get my twuck.”

“Yes, play with your truck,” I said, clutching the shredded remains of my composure around me like a too-small robe. He got down on all fours under the computer desk…and turned off the computer power strip.

I don’t exactly remember what came out of my mouth before I clamped my lips shut on it, but you might imagine it wasn’t pretty. Not…pretty…at…all. (Stop laughing! I need several months before I can laugh at this story!)

Deep breath, missy. In…..out….in…out.

At the end of this long, hard day, I wanted nothing more than to be left alone. Alex sat down to finish Return of the Jedi. This is a new thing for him, and he’s pursuing it with his usual enthusiasm, running headlong through all three of the oldies in the span of a week. But there are some pretty intense scenes in Jedi–you know, lightning bolt torture–and I needed to tell him when to hide his eyes. So I breezed back and forth from kitchen to office to living room, narrating to Alex what was happening (because let’s be honest, a lot of it’s still over his head).

And as I watched Luke battle his darker nature, as the twin Darths pushed his buttons and dismantled his hope one block at a time, maneuvering him into an emotional corner, I suddenly recognized myself: trying–trying so hard–not to lose it. Knowing the stakes: “Once you start, forever will it dominate your destiny” (what did we ever do for wisdom before Yoda?) Trying to be serene in the face of a repeated bombardment of frustration and desperation. To focus on the choice to love, instead of giving in to my own Dark Side.

Luke finally had enough; the lightsabers came out, and he began his journey toward Ultimate Bad Guy status. But then…then he recognized what was happening. He put the brakes on, threw the weapon away, decided he’d rather die the man he wanted to be than live as everything he’d fought against.

There’s a lesson in there for me. I haven’t worked it all out yet, but I think it has something to do with choosing, time and time again, to get up after I face plant along the Mommy Road.

Like I couldn’t have worked that out for myself. Right?

(Speaking of Star Wars…we just really need some Cello Wars today.)

(Feb. 2007)

July 2007, post-heart-surgery at Cardinal Glennon’s PICU

First birthday, Feb. 2008

PT, January 2009

Big sister, March 2009

School supply shopping, August 2010: The future’s so bright, I gotta wear shades

First day of preschool, Feb. 2, 2010

Winter 2011, with baby cousin

Kitchen Aid, June 2011

At the pool, summer 2011

Holding Michael, December 2011

At Michael’s baptism

February 2, 2012: five years old. Happy birthday, sweetie!

It’s almost Lent, folks! I know, I’m ahead of the game, but I have a good reason: I am hosting a giveaway for my new book, Bring Lent To Life. If you’re a Catholic mother with young (or youngish) children, click over and leave a comment for a chance to win a signed copy!

Okay, now that I’ve done my shameless self-promo…moving on.

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I was poking around online, doing magazine market research yesterday, and an ad for “Molexit” caught my eye. Considering the helpless rage with which I am consumed every time I walk across my big lawn, my ankle twisting on the maze of mole hills, you can imagine I clicked. A little browsing led me to THIS. All I have to say is: These are people after my own heart.

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I teach flute and voice lessons in my basement, which you might imagine can be a bit of an adventure with three small children and, uh, a nursing baby. Alex used to be very quiet over in the corner, humming vocal warmups along with the students while he bent over a Lego creation or a rescue hero. (Precursor to the autopilot humming he does All.The.Time now.) But Julianna? Julianna takes it to a whole new level. This week in lessons, she turned her back to us, planted her feet shoulder-width apart, and sang to the sunny window with arms out Broadway-finale style, “Eee-AAAAAAAHHHHaaaaah!”

Ah, how I love that girl, despite her selective deafeness to anything she doesn’t feel like hearing…

___4___

Speaking of Julianna, or rather, Julianna and Michael…my baby is 8 weeks old already. I cannot believe it. I’ve been anxiously watching for his first smile, and we got it this week–a few, fleeting, absolutely adorable smiles. But incredibly hard to catch. I spent twenty minutes making a complete, blithering fool of myself while the dish water got cold one night. Once–once–I hit the button at exactly the right moment….and the camera turned off. I had my finger on the power instead of the shutter. Sigh. In the end, this was the best I got:

While Julianna, who torments him ceaselessly, turning him sideways in his bouncy, soundlessly and sneakily rolling him over onto his tummy (and here I thought I was making a big joke when I said she was destined to be a superspy), dragging him by one arm when my back is turned, lying on top of him…what, you think I’m kidding? Look at this! Caught in the act!

Julianna is the one Michael smiles for most often. What is this, some freaky variant on Stockholm syndrome???????

___5___

Smiles aside, Michael adores all his big siblings. He can’t smile with his mouth yet, but his whole face smiles. Moms, you know that look, right? Heart-meltingly bright eyes, arms and legs kicking, face alight? He does that often for us. And it makes me happy to see how much Nicholas loves him. I was worried about Nicholas, because he’s such a drama king, and so needy. I was afraid we’d be in for all manner of resentment and tantrums. But the transition has been remarkably smooth, and he absolutely adores his baby brother, asking to hold him at all times of the day. Of course, he lasts about ten seconds, but hey. He’s a boy.

___6___

Alex was home from school two days this week. And now we have piles of homework to catch up on. Actually, he did most of it while I was teaching yesterday, but it’s a wakeup call, reminding me that whew, we are entering a new phase of parenthood!

___7___

Well, I’m officially back to that phase of my life: the obsessed with sleep stage. It’s cyclical, and varies in cause and style. Right now it’s the “how many times did he get up last night?” strain. The Shangri-la of sleep for me right now would be getting to that stage where the baby wakes up around two and then sleeps till five or six. My babysitter keeps asking, “Is he sleeping through the night yet?” I’m like, uh…no. Is he supposed to? I wouldn’t know. I’ve never had a child who slept through the night until he or she was three years old.

Whatever, dude. Sleep is for wimps.

But that makes me wonder–how many of you actually have kids who slept through the night consistently? And at what age?

Enough from me. Don’t forget to enter my giveaway!