(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!

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!)

Image via Wikipedia

Jonah had a really bad attitude. God gave him a job he didn’t want to do– the people of Nineveh weren’t worth his trouble–so he took off in the opposite direction, only to find himself stuck in the belly of a fish. When he proved indigestible (how lucky for him he was spit out near shore!), he did as he was told…but he did it with bad grace. The people of Nineveh repented, and God spared them.

Jonah should have been ecstatic. Who gets that kind of chance to change the world? Instead, he pouted because he thought God had made him look stupid. So he went into the desert to die. When his shade tree died, he threw a little hissy fit, and God said, “How can you get so upset over the death of this little plant, and simultaneously be completely insensitive to the deaths of the people of an entire city?”

This is the story our associate pastor told in the homily yesterday. It reminded me of a column from our diocesan newspaper this week, addressing the story about the Marines who urinated on the bodies of dead Taliban members. I won’t share it all because I don’t have permission, but this part really stopped me in my tracks:

“The irony is so great that we don’t get it. A sterile liquid produced by the kidney and streamed onto a cadaver is morally debated, but the hail of bullets that penetrated those bodies, making inanimate what was only minutes before a breathing, sentient being, does not enter the discourse. War gets reduced to an etiquette that shows more respect for the dead than the living.”

Christian and I spent Saturday morning at a training session to learn how to talk to parents receiving a diagnosis of Down syndrome–part of our local effort to start a hospital visitation program. Right now, the presenter told us, most people are being “surprised in the delivery room.” But very soon the paradigm will shift to almost exclusively prenatal diagnoses, because of the new tests. She reiterated that the Down Syndrome Guild is “pro-information,” not “pro-life,” a position I have always thought was untenable–how can you advocate for people without taking a stand that they are inherently worth taking a stand for?

But as the morning progressed, I began to see the wisdom, or at least the necessity, of such a position. If we come out all guns blazing, laying down a blanket “law” via a prolife message, we will never get the opportunity to witness at all; people will never let us near them, because they will know that we are more about our soapbox than we are about helping them. The fact is that abortion is an option, whether we like it or not. If we hope to be credible witnesses, we have to acknowledge that, and say “Look, we know what you’ve heard about Down’s is scary. Here’s the part the doctors can’t tell you”–without trying to “guilt” people into proper behavior at a time when they’re wounded and bewildered. If we can’t do that, then we can’t be trusted to have a family’s best interest at heart, and we have no right to be doing this work at all.

Sometimes we get so focused on the unborn child that we forget the wounded parents before us. And that’s why I bring it up in connection with Jonah and the dead Taliban. We must respect the dignity of every person–even when they are considering an action we find morally reprehensible–even when the dignity of another life is at stake. The risk to the baby’s life does not negate our responsibility to respect the parent as well.

I don’t have my thoughts all in order on this topic yet; I can’t help feeling there are holes in my logic that I haven’t yet identified. So I’ll be interested to see your thoughts.

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.

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.

(Did you even know it was DS Awareness Month? Yes, it gets so very much coverage.)

Please welcome Karen and give her some “comment love,” as they say.

****

ZAPPPPPP!

Like a lightning bolt God injects the races of humanity with a “Special Race:” Down Syndrome. 

Leaping over all boundary lines comes God’s Gifts of Love and Simplicity.  These Sweet, Simple, Joyful people come to us just wanting to love us and help us.  To be accepted and acknowledged. 

My sister Peggy came to us in 1956.  At that time there was a decision whether to raise her with the rest of us and Thanks Be to God, my parents decided to keep her at home. 

Because of her I learned that all of life is not generic, sterile, pretty, or easy.  I learned to deal with the unusualities of people.  I learned patience and a sense of humor.  I learned that love comes unexpectedly and exuberantly.

My sister Peggy had an active role in our family.  She taught my children how to make their letters and numbers while they still knew less than she did.  She ran to greet us whenever we visited.  She visited us once and helped our church sacristan go through every one of eight hundred (800) loose-leaf hymnals noting which pages needed to be replaced.  Who else would have that kind of patience for tedium?

Peggy worked and volunteered in the community.  She excelled in latch hook rugs, taking a first place ribbon at the county fair over the home ec teacher!  She excelled in Special Olympics and carried her weekly bowling score in her pocket until next week brought a new score.  

She kept a notebook of birthdays, including the Bishop of the Diocese of Jefferson City. She never knew a stranger, striking up conversations wherever she went, and evoking fond kindness from everyone who encountered her.  Doing something kind for Peggy made people feel good about themselves.

Our family looks on Down Syndrome as a Blessing and a call to Growth, and never, never as a Curse or something to be Avoided or Aborted.

God only gives us as much as we can handle. 

NOTE:  Peggy was born in 1956 and died with Alzheimer’s in 2004 at the age 47. Her Alzheimer’s set on about the age of 43.  Because my father was in the Army-Air Force and earned a spot in the national cemetery, Peggy is buried there with Daddy, awaiting Mother.