The end and the beginning

In the last month, I have had to come to terms with the reality of Julianna’s Down Syndrome.

There is an initial grieving when you learn that your child has a disability. For some people it goes on forever. We were blessed—it was over in a few days. Then for a while, life goes on as normally as it can. A baby, after all, is a baby, and a child with DS, aside from heart conditions and so forth, isn’t different from any other baby.

But eventually the delays begin to show. For a while, you don’t notice, because your baby is your baby. Then you notice, but you think, ah, it’s only a little. Then come the niggling thoughts at inconvenient moments, like the middle of the night, or while you’re making dinner: Wasn’t Alex (fill in the blank) by (fill in the blank)? Well, you think, she is going to be delayed, after all, and holy cow, look at the way she works the room! Look at her sitting up!

Until, sometime around ten months, you think, she’s not putting anything in her mouth. I mean, nothing. You say, wait a minute, she’s getting close to a year and she’s not self-feeding. We’re still nursing five times a day because she can’t eat finger food. So you ask the occupational therapist, and the OT says, hmmmmmm….well, you know, I’m kind of stumped. I think you’re just going to have to wait till she’s ready.

You begin the process of switching OTs, because waiting just isn’t an option. She’s doing too well in other areas.

But even so, she’s eleven months old tomorrow, and she’s sitting up, but not transitioning in and out of sitting; she has to be helped into all-fours; she’s not pulling up and she only stands with a great deal of support on her butt.

So now the secondary grieving begins. This grief is not so all-consuming, so stormy, as the initial spat. This one goes much deeper. It lasts for months, accompanied by uncertainty and worry and fear. This grief is the grief of having to take an ugly, objective word like “retarded” and use it when describing your child. I still can’t do it. I have to say she’s “delayed.” My entire being cringes when I even think the other.

This was 2007.

Julianna is joy, and I rise up in blazing, righteous fury when I hear of people who choose to “terminate” their babies’ lives because of DS. (“Terminate,” as if ending a child’s life is no more consequential than firing a person.) And yet I also have to be honest and say that I have never in my life been so glad to see a calendar year pass into history.

For 2008, I’ll be satisfied if we can just stay out of the hospital.

Pictures!

Aha! I did it! I've been trying to figure out how to put pictures on this blog without them distorting ever since I started the blog. This is certainly not perfect, but it is a good start.

I think I'll quit while I'm ahead, tonight. :)

Christmas and the mess we live in

There’s this really annoying pharmacy ad that plays at this time of year that starts, “It’s that special holiday feeling that happens every year.” Every time I hear it, I want to throttle whoever wrote it. Why do we set up these expectations? Why should we expect Christmas to be so much better than any other time of year? Life is a mess, for everyone, at almost all times, and when we set up these ridiculous standards for the Christmas season, it just makes us dissatisfied, like we’ve somehow been gypped of something we have a right to expect.

The mess is all around me these days. In my life, and in the lives of those close to me. Illnesses, hospital stays, death and loss—in some cases, the complete upheaval, the overthrow of all carefully-laid (and very reasonable, I might add) plans.

It’s the first time in quite a while that I’ve questioned God as to why. For those going through these frustrating, difficult and downright terrifying times, it helps not at all to hear platitudes like “God has his reasons.” Yet platitudes are all we have to offer. I want so desperately to be of use to those I love, and I keep butting my head against the brick wall of my own ineptitude and helplessness.

This morning, the priest talked about the contrast between the expectations we have for the season and the images presented to us in the readings for the 2nd Sunday of Advent, year A. You know the expectations: peace on earth, silent night, the angelic little baby (blond, of course) lying in a manger. And then there was today’s Gospel: “Repent, you @$!& brood of vipers!”

His take on the matter was that we often think we can’t be witnesses to the Kingdom, to love, to goodness, to the Gospel, unless our lives are in order, and we have things under control. Otherwise, who would ever listen to us? And yet, God often uses the messiest, most chaotic times in our lives to teach us and everyone else what He has in mind.

I suppose it’s just more platitudes, but it really struck a chord with me today.

Right Brain, Scatter Brain

"Cleaning and scrubbing can wait for tomorrow,
For babies grow up, I've learned, to my sorrow.
So quiet down, cobwebs. Dust, go to sleep.
I'm rocking my baby, and babies don't keep."

(Ruth Hulburt Hamilton)

When she’s at home, my mother-in-law is a consummate housekeepr. Her trash cans are emptied daily (at least), her dishes are washed, dried and put away after each meal, and each night she straightens whatever mess her kids, grandkids, husband and in-laws have left.

My cousin Becky managed to design and build a house and parent two elementary age boys while living in a two-car garage for a year. She’s organized, calm, and her boys are well-behaved, all-around good kids.

My friend Tricia designs a summer-long program of chores, activities and recreation, down to daily menus for a balanced diet.

And then there’s me.

My laundry grinds to a halt mid-cycle and lays in piles of madness that grow every time I throw a dirty bib up the stairs.

I stick up my nose every Thursday, thinking, Aw man, it’s been a week already since I cleaned the house?

The dishes get washed at least every third day. But not necessarily put away.

And last week I took the kids up to the farm for a daylong outing, and I left the diaper bag at home.

My friend Jim chuckled when I related that. Then he quickly curbed it. “Well,” he said graciously, “you’re one of those creative right-brained people.”

Scatterbrained is more like it. And the more I think about it, the more I think he’s right—only there’s more to it than that. I’m scatterbrained because my attention is split in too many directions. School liturgies. Weekend liturgies. Music projects for publishers. New music projects. Novels. Short stories. Articles. Reading about writing. Reading in general. The kids. NFP recertification.

Oh yeah, don’t forget the housework.

Last weekend the readings at church said, “From those given much, much will be expected.” I guess that’s me. I just wish part of the bequest had been a brain capable of keeping it all straight.

Alex's First Halloween

Nov. 1, 2007
All Saints Day

Last night, Christian and I took Alex trick-or-treating for the first time. He was Bob the Builder, outfitted in blue plaid and too-big jeans that fell down around his tool belt, exposing gray big boy briefs. He wore his yellow construction hat perched at a rakish angle on his head and completed the outfit with light-up Star Wars tennis shoes (garage sale special, 50 cents).

I enjoyed Halloween in a whole new ways last night. We stood back and let him go to the doors and ring them, and every time we had to tell him to say thank you. After 45 minutes of “Ooooh, how cute!” from every woman who answered the door (yes, OK, he’s adorable, I admit it) he was ready to stop “getting more candy” and to go eat some. We went home and turned on our own lights.

Christian served the first several trick-or-treaters, and then I took over till time to put Julianna to bed. Then…“Wanna give candy to the kids!” Alex said in his slow, deliberate way. Christian let him do it up till 8:00, which is bedtime, and then began a 45-minute pitched battle between the parents and the overexcited 2-year-old.

When at last he was ready for bed, the late rush—all the big kids—started. So we let him come downstairs. By this time we just wanted to get rid of as much candy as possible, so we let him take whole handfuls and put them in kids’ bags & buckets. He was in Heaven. But the part that made me really proud was that he was taking all the pieces of candy that he thought were the best ones and giving those out. He wouldn’t let me give out the cheapie eyeballs that I bought because they were cheap. He thought they were gross, and he wasn’t going to let me give them out. No, he was going to give away all the Kit Kat, Mounds, and Milky Way.

Christian tells me I shouldn’t read into that, but it seems to me that selfishness is so innate that even a 2-year-old ought to be well-versed in it. I’m so proud of him for giving the best to others.

Communing with Calm

This afternoon, at last, I went down to the creek behind the house. I’ve been putting it off until the weeds die back, so I can clear a path, but today, somehow, sitting on a picnic blanket in the shade of the deck just didn’t cut it. I wanted to be down in the woods, in the midst of the wild trees. So I tromped the short distance down to the creek in my dress slacks and platform slides (great gear, Kate), and there I stood on the bank above the creek, surrounded by trees swaying from tip to root in this crazy wind that blows through Missouri, trying to cool down the Earth to a proper temperature for late October. I remembered Alex yesterday, sitting on the deck eating his macaroni and cheese and pointing with his fork. “The trees are dancing,” he said. (Did I teach him that?)

My moments of communing with nature are few and far between, and all too short lived these days. I used to drive out to Rock Bridge, or the Stargazer, and take a walk to the edge of a cliff and perch there staring into open space, for an hour or more. I always knew when it was time to go—it happens without my being aware of it; suddenly I find myself on my feet saying goodbye to the view. That moment comes when the “hurry, hurry, hurry!” in my heart relaxes and goes to sleep.

I don’t get to that point very often anymore. Most of my communing times are stolen outside our house, within the noise radius of I-70 (I don’t bother going outside when the wind is in the south). And inevitably I hear, “Mommy!” from the window upstairs, or a long, A-a-a-a-a-a-aaaaaaah” over the monitor, long before I get to the point of calm.

But there are Julianna’s smiles to compensate me, and the occasional giggle, and Alex’s snapping chocolate eyes and impulsive hugs. They don’t take away the need…but they do ease it.

Field Trip

There is no machine cooler than the combine.

I’ve known that since I was a very little girl, and I’m delighted that Alex is now old enough to agree with me. Ever since wheat harvest ended (in mid-July), he has been asking when Grandpa would get the combine out so he could take another ride. The combine came out last weekend; we have been counting the days all this week. And today was the day.

It was a beautiful drive from Columbia to Moberly, a drive lined with cornfields half-harvested and soybean fields spangled with gold and red. When we rounded the last corner on “the bumpy road,” there were the two grain trucks and a tractor and grain cart lined up along the edge of the “hundred acre” field. Alex could barely contain himself. It was everything a boy of two could ask for.

Autumn is my favorite of all the seasons. It’s the colors, the bracing air, the sense of fulfillment—“the crowning of the year.” Although I know this every day, every fall the wonder overtakes me again as if I’ve never felt it before. The air today was cool, filled with the smell of corn stubble—sweet, in a way that you can’t equate with food. I got Alex out of the van, and he shrieked as the big red Case 2100 came toward us, chewing up the rows with a roar and spitting out chaff behind it. He fairly danced in place, giggling without self-consciousness or self-control.

We rode (and played, while Grandpa fixed the combine) for nearly two hours, all three of us, with my dad. Alex loved it. Julianna looked around with placid disinterest at everything but me. (I got smiles.) After lunch, Alex went for a solo ride with Grandpa while I nursed Julianna. As the combine slowly sank over the hill, the incessant bellow faded to a muted roar, and then to silence—a brief, perfect stillness. Up sprang a tricksy little wind, and a funnel of long dead leaves and stubble went swirling into the air. A miniature tornado, there on a perfectly clear September day, whirling its way across the cut rows, then spinning over the tassled heads still standing.

And then came the subsonic rumble, and the outermost row of corn at the top of the hill began to thrash. A moment later the dark fork point of the header emerged, then the Big Top riding above the brown rows, and at last, the cab clearing the tall stalks.

We got back on the road about 2:30, and the first time I turned around to glance at my children, they were both fast asleep. If only naptime were this easy every day.