(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…

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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???????

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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.

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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!

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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!

Julianna’s the ringleader of this little comic group, and her repertoire of jokes consists of one: She signs “eat” and points to random objects–the baby’s nose, the pillow, the wall, my jeans, the phone–and giggles hysterically.

The first time, I admit, I was slow on the uptake (as I often am with jokes). “You’re gonna eat the phone?” I said blankly, and she fell on the pillow, overcome by mirth. Now that was funny. You poor people out there in the e-verse have no way of comprehending how magical Julianna’s laugh is. I was powerless against it. The first time, anyway.

Nicholas found it so hysterical, he couldn’t even sit up. Instantly, he adopted the joke as his own, wholly forgetting that he can talk.

Although–and I hope you’ll permit me the tangent; my story’s finished anyway–Julianna actually is talking now. She almost always asks for “milk please” and names a whole bunch of colors, as well as counting one to ten. You have to know the context; you wouldn’t just recognize the words automatically–but she is saying them. Yesterday her big speech therapy task was to learn to say “go home.” I’m so proud of my little girl. Except when she’s sitting motionless, pretending she can’t hear me issuing instructions, that is. That girl can use her disability to play stupid when she doesn’t want to do something. We really have to stay on our toes to try not to get manipulated. I know she’s winning some of the battles…like the chores battle. Nicholas is way farther than she is on the “complies with instructions” continuum. I know I have to fight that battle eventually, but I don’t have the time and emotional energy to deal with them simultaneously. Let’s just hope I manage to do it before Michael gets old enough to need the lesson!

(By the way–I’m well aware that today is Wednesday, not Thursday, but I have a special post prepared that requires editorial approval, so I’m doing Motherhood Moment a day early today to make room for it! Stay tuned!)

However, I have a good relationship with all the people who work with Julianna in preschool, soI wasn’t worried. it was generally a positive experience. It takes an hour or so to go through current skills strengths, weaknesses and goal-setting, and then we got to the part where we say “how many minutes in the regular classroom, and how many minutes of special instruction?” At that point, I sensed everyone in the room taking a deep breath, and I thought, Uh-oh.

The problem, her classroom teacher pointed out, is that the people at the new school don’t really know Julianna, don’t really know what she’s capable of. So while we, and specifically she (the teacher), know her to be more than capable of a high level of inclusion, the new team wants to play it cautious. After all, we’d rather over-support her and withdraw it quickly than under-support her and have her begin kindergarten with frustration or failure.

It makes perfect sense, and for that reason I took a deep breath and signed off on something utterly contrary to everything I want for my daughter: namely, putting her in a self-contained classroom for all regular instruction, with only her “specials” happening with her typically-developing peers. I did so with a very clear instruction that I wanted it in the plan that re-evaluation would begin immediately, and not late in October or November. And only after taking down three different names for people within the new school whose phone lines I can burn down to make sure it doesn’t get set aside.

I signed, but I have tears in my eyes thinking about it, and a vague sense of nausea. Because I know how hard it is to move a bureaucracy unless you have an advocate within…and my whole support system is at the early childhood center, not at the elementary school. And our goal for the kindergarten year is to see if Julianna can function in the classroom without that support, because only then can we explore the possibility of sending her to Catholic school with her brothers.

I spent all week watching her outdo the expectations for a child with Down’s. They think she needs special P.E. because she’ll need help with stamina navigating a school so big. Knowing my child, I shook my head and smiled. I smiled bigger three days later when she pushed a stroller containing a child almost as big as she is up a huge hill, down the hill, around the corner, 2/3 of a mile from the fire station to our house. Stamina: check.

I watched her name colors and identify letters, and shook my head at 65% special instruction, because she really isn’t much behind other almost-5-year-olds in terms of her knowledge…only in speech.

And then, as I worked on a music list before choir practice yesterday afternoon, she settled at my feet with the cards from the “Your Baby Can Read” box. I’ve ceased to wonder why she’s interested in a bunch of cards with no pictures, only words; she just likes shuffling through them. In the middle of scribbling notes to myself, Julianna uttered her usual “pay attention to me” grunt. I turned around to see her making a sign I didn’t recognize: her hands crossing in front of each other repeatedly, as if drawing attention to her ribs. “I don’t know that sign,” I said, but she kept signing insistently. I glanced at the card on her lap. It said “zebra.” “Zebra?” I said halfheartedly.

“Euh!” she said happily, and signed all the more furiously.

I frowned, trying hard to squelch the leap in my chest, and turned to the computer. And I found this link. And my breath caught.

My girl can’t talk, but she can read…at least a little.

My breath caught, because now I know I have reason to fight for what I always said I wanted for her.

My name is Julianna.

This is a story about keeping my eyes ahead.

Sometimes when I walk,
I look down at the ground.

When I look down at the ground,
I can run into things and get hurt.

Sometimes I run into walls.
It is not safe to run into walls.

Sometimes I run into doors.
It is not safe to run into doors.

Sometimes I run into friends.
It is not safe to run into friends.

If I keep my eyes ahead,
I will not run into my friends.
I will be safe.

If I keep my eyes ahead,
I will not run into doors.
I will be safe.

If I keep my eyes ahead,
I will not run into walls.
I will be safe.

My name is Julianna.
I will keep my eyes ahead.
I will be safe.

Well…at least we know what language to use now!

At four years and almost eleven months, she has finally entrenched herself firmly in the imaginative play stage. She loves dolls, and she doesn’t always connect the difference between cloth-and-plastic baby and real baby. It’s half-electrifying, half-terrifying, that his hands flap around and tap her face when she holds him. And she can’t seem to understand that she can’t drag him around by one arm or pick him up by the neck, the way she does her dolly.

She’s fascinated by nursing. “Baby–eat,” she signs, every time we sit down, and I have to remind her to use her words. “Buh buh,” she repeats dutifully. “Eh.” (We have a ways to go on speech, but she’s trying!)

So it is that after dinner on the Tuesday before Christmas, the first dinner in which I brought the Boppy to the table (although he didn’t actually nurse), I get up to start washing dishes and my husband says, “Kate, look at her!” I turn around and find Julianna sitting in my chair at the end of the table, with the boppy around her waist, grunting and reaching her arms out to have the baby put on her lap.

Christian and I chuckle. And then my mind races ahead a decade, two decades. “Oh, I hope she never has reason to nurse a baby,” I murmur. Christian hmmmm‘s his agreement, and Alex frowns. “Why?” he says.

“Never mind,” Christian says hastily.

I struggle mightily all the time to reconcile my own beliefs about sexuality–openness to life, the holiness of children, respecting the woman’s body as it was created and not imposing artificial infertility upon it in the name of convenience–with my wishes for Julianna. It’s very uncomfortable to see the conflict between my beliefs in general and my complete unwillingness to apply them to my daughter’s life.

Culturally speaking, birth control is absolutely a given for girls with Down syndrome. The nature of her chromosomes makes it a 50-50 shot that any child she bears will also have Down’s. And I don’t think she could raise a child, with or without Down’s. I know that any child my daughter bears will ultimately be my responsibility. And I don’t want to raise grandkids, with or without special needs–but especially, I don’t want to start down this road again at the age of fifty.

It seems sad, wrong somehow, to want to deny my daughter the fulfillment of womanhood. How can I, in conscience, willfully deny her what I spent years longing for myself, what has brought me so much fulfillment and joy?

Yet my greatest fear is that Julianna will be taken advantage of–in high school, in independent adulthood. She is beautiful, and she is vulnerable. I love that she’s beautiful, even by cultural standards, because it facilitates her ability to be an ambassador for special needs. But it also terrifies me. How can I equip her for adolescence, for the normal desires that she, even more than the rest of her peers, needs not to indulge? How can I protect her from being taken advantage of because of her beauty and her vulnerability? I want her to be independent, to have autonomy and the gift of independent living. But the more independent she is, the greater the risk.

Maybe I underestimate her. Maybe her very chromosomal giftedness will connect her more closely to God, render her impervious to what I fear. And maybe she’s perfectly capable of mothering a child.

I know for sure I’m borrowing trouble; for Heaven’s sake, she’s not even in kindergarten yet. But these are the things a parent of a child with special needs worries about. And I share it as one more slice of that life: the beautiful and the difficult.

Before I begin, let me share my success of the week: my short story, “The Third Day,” placed in the top ten for the Glass Woman Prize. The link only lists the story, because I’m still hoping to publish it elsewhere, but I’m pretty proud of this honor–there were well over 900 entries, and I helped with the first-round reading, so I know how good the quality of the entries was.

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My mom tells this story about me when I was about Julianna’s age. Apparently I went into the bedroom while my parents were at breakfast and dragged my baby sister out of the crib and carried her out to the kitchen shoved up against my chest.

Can you guess why I’m sharing this story? 

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Last night I was folding laundry in the upstairs hallway, with Michael lying on the floor beside me, while Christian gave baths. He sent the middle two to me for dressing for bed. I got Julianna ready, and Nicholas came down the hall. I turned around to pick up a diaper–I mean, literally turned around to pick up a diaper–and when I turned back around, Julianna was standing in the hallway with Michael crushed against her chest, hanging down like a flopping baby doll. She looked incredibly pleased with herself. “Julianna, no!” I shrieked, and rescused him before she gave him brain damage, dropping him on the floor.

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This experience taught me that there is no safe place in the house for Michael if my eyes are not on him, except the crib. So this morning, when I needed to use the bathroom, I went out of my way to put him out of her reach, in the crib. Except apparently even that isn’t safe, because I started hearing bloodcurdling screams. I rushed back to the scene to find that she had grabbed him by the arm through the crib rail and dragged him over to the edge. Where she was presently engaged in trying to pull him by the arm through the rail. His arm was at a horrible angle. I was actually afraid she’d dislocated it.

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I suppose this means that for the forseeable future, I have to have a WAY better idea of where my daughter is and what she is doing at all times of the day. Nice, Julianna. Like I needed anything else to worry about. (Note to Dottie: are you sure it’s too late to run away?????)

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All kidding aside, I know these stories are funny, but I am a little freaked out. I already stop to make sure he’s breathing far more often than I ever did with the first three. I suppose that’s a NICU gift that keeps on giving, but I would never have thought I would become one of those moms. It’s not like me.

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On a different subject: Here’s an article I wrote for Liguorian magazine’s December issue. They asked me to write a reflection on generosity as it relates to the Advent/Christmas season. I focused on Christmas as the gift of a person, Jesus, and how that might shape the way we look at giving–in other words, giving of ourselves more than giving Stuff.

“Wight hee,” says Nicholas, from the opposite corner of the bunk. “I tuck my bay in!” Sure enough, Christian finds a two-inch-high stuffed Christmas ornament bear peeking out from beneath the Leaning Tower of Blankets…

…Attending Mass at Newman a few weeks ago leads to Alex begging to participate in their Christmas pageant. Because he’s not a member, he can’t have a speaking role, but he is playing a shepherd, who is to be led to the manger by an angel. Conveniently enough, his partner angel is his best (girl) friend from school. He comes out of rehearsal in high spirits. “Mommy, E__ and I are walking down the aisle together!” he says. “We hold hands!” He doesn’t understand why Mommy and Daddy have to pinch our lips to keep from laughing—or why we won’t explain it to him…

…We haven’t been down to the woods as much this year as in past years. Pregnant, tired mommy? Writing-busy mommy? Or just lazy mommy? In any case, there aren’t many days left to enjoy in the woods, so one morning I take the little ones down to the creek. I sit down, sharp rocks poking my heavy bottom, as Nicholas throws rocks. Julianna stands with her toes at the very edge of the creek, throws a rock or two, and then, quietly, without fuss, comes over to me and plants herself on my left leg for a snuggle. Fine brown hair against my cheek, body nestled against mine. We look up together as an unexpectedly warm late-fall wind sets the bare sycamores and russet-crowned oaks to dancing. “Buh-buh-buh,” she says as a bird flies overhead—one of many protowords she uses now. And it is a perfect moment…quiet, serene, and all too fleeting…

…I sit at the computer desk, and my insides flutter. I know that by bedtime I’ll feel bloated; in the middle of the night, the baby will shift so far to one side that I’ll moan as I try to roll over–that by morning, my back will ache from lack of support. But in this moment, the raindrop-trickle of little limbs and fingers on my insides feels like grace itself…

There are so many things to be thankful for, this week of giving thanks. I whisper the list silently skyward, but these I preserve and share.

May the coming holiday be full of grace, and peace, and love. I’ll see you all back here on Monday.

But Julianna—there’s something different about her laugh. Something silvery and dusky and altogether otherworldly. There’s something about the way she reacts and interacts that makes me wonder sometimes if it’s not so much that her intelligence is lower, but that part of it exists in another plane. Julianna, perhaps because she’s so quiet, so focused on the task at hand, whether it’s listening to music or pushing a pop mower or hanging over a playground swing…Julianna breathes a different feel into the world than her brothers do. A feel of serenity.

Which is not to say she doesn’t have her stinker moments. She does—and how! In three hours one Friday morning, she took the lid off the honey jar and dumped half its contents on the table; she turned the baking soda box upside down on the bathroom counter; and she emptied the canister of Cavender’s Greek Seasoning. Julianna whiny is a sight to behold…one we behold every morning.

But then there are times when she meets my eyes and I can’t breathe. It’s like falling in love, instantly and irrevocably. And although I fall in love with my boys regularly, that feeling is more tender, the most beautiful and prosaic of loves, the one every mother feels for her child. Falling in love with Julianna is more like being knocked flat on my back by a lightning bolt, like Paul on the road to Damascus.

When I feel that tug on my spirit, the one that sucks me into a whirlpool of painful self-recognition, I often pause to ponder the opinions expressed, usually anonymously, online. The people who think Julianna’s life is somehow worth less, that she is a drain or a burden on the rest of us, that it would be kinder if people like her were never brought to birth—or, conversely, that the things that help her reach her potential should be no one’s burden but those who chose to bring her into the world–as if she’s less important than a normal child, for whom we’d never blink an eye at providing those same supports. That she should be isolated behind a wall. Anything to ensure that no one else is inconvenienced by her existence.

I thank God I was given the gift of a child with special needs. The difficulties that so frighten the uninitiated have broken my heart and left it open to recognize beauty in all the other moments, the ones you can’t quantify. In some ways she is, indeed, “the least of these.” And yet when she laughs, when she catches my eye and bodyslams me on the pilgrim road, I can’t help feeling that all the platitudes, annoying though they may be, are correct: she is closer to God than I ever will be.

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They were doing so well.

So far, they’ve braved a two-hour trip in a car with windows they can’t see out of; they told me when they needed bathroom breaks; they ate well in an unfamiliar house, tag-teamed their catnaps in the car, and tolerated an unexpectedly long wait at the doctor’s office.

Now, at 4p.m., we head for a meeting with my editor to discuss a possible future project. We sit in the tiny cafeteria at the front of Dierbergs and wait. I try to find room in the booth for snack boxes of raisins spread on napkins, a giant bag of books and toys, my NEO, and the stack of napkins I’m using in place of Kleenex.

“Hi!” says my editor brightly. We do introductions, the kids show off their fast-dwindling stack of raisins, and the meeting begins.

Here’s what I had in mind.

Here’s what we already have. What do you think?

Yes, they do look awfully similar, don’t they?

Yes, picture books get expensive.

Nicholas runs out of raisins. I get out the crayons.

What about this idea? Or this one?

Can you clarify? I’m not sure I’m following, with my daughter pulling napkins out of the napkin holder on the table. I set it up on the ledge to get it out of reach.

Well, it could be a resource for children, to go with our adult series…

CRASH. The napkin holder attempts to gouge the Formica, entombing my daughter’s hand within the crater. A quick examination reveals no harm done. I push the napkin holder toward Nicholas, who seems pretty mellow on the other side of the table. Julianna tries to climb over me to get out of the booth. I keep talking, but I sound increasingly out of breath as my pregnant body tries and fails to keep up with the energy of 4 ½.

…books selling well… Distributors…preorders…

The gratifying sensation that attempts to puff up my insides implodes as my daughter climbs over the back of the booth and slips into the aisle. I do a quick cost-benefit analysis and decide to give her a short leash. She walks up to a deli worker on his break. He’s trying to read Facebook on his phone; she places a cute little hand on his leg and smiles adorably into his face. “I’m so sorry,” I say, leaping up to drag her back. I pull out three books from the bag. She rejects them in quick succession. Nicholas puts his raisin-crusted hand on my editor’s shoulder and leans in to say, “Batman!”

What about Ordinary Time? I pull two pages out of the coloring book and set the crayon box between the two of them. That could incorporate several of these ideas, don’t you think?

Yes, that sounds possible.

SCREAM. Julianna doesn’t WANT to color on a ripped-out page, she wants the BOOK.

I’m so sorry, they haven’t really had naps, they’re  usually much better-behaved.

Oh, they’re fine. Now about this column…I think your point starts here, and I think that’s what you want to use for an opening.

Yes, that makes sense. Actually, I’m going on faith that it makes sense, because mostly what I know is that Julianna has climbed over the booth again. She makes a beeline for her interrupted conquest. This time she climbs up opposite him and places both arms on the table, giving him her winningest smile. I don’t know whether to be defeated by her charm or come down hard on her. I drag her back again. This time she screams the whole way.

Well, I think that about covers it.

Yes, thanks for being willing to drive up here…I can’t even imagine how they’d behave if we had to drive down to you today!

Oh, they’re fine.

We pack up the scattered books, crayons, toys and papers. I shove one bag over each shoulder and attempt to hold my children’s hands to walk out the door. Simultaneously, they pull that toddler trick where they simply refuse to stand up, so you’re faced with the dilemma of dragging them along by their arms, possibly dislocating shoulders in public, or you have to come up with some other method of discipline. Frankly, I’m not sure how we get to the car, because the instant they see where we’re headed, the screaming begins in earnest. Sweating, I somehow wrestle everyone and everything into place, lock restraints, and make it onto the highway.

Fifteen seconds later, blissful silence reigns in the back seat. At 5p.m., it is naptime at last.