In the Eye of the Beholder

In the Eye of the Beholder: a celebration of a year

“…no eye has ever seen any God but you doing such deeds for those who wait for him…”
Isaiah 64: 3

She’s so beautiful.

I have to be honest and admit that I have always, always been uncomfortable around people with disabilities. Afraid of their differences. For certain, I have never, ever thought of a person with a disability as beautiful. Clearly, this is one of the reasons God gave her to me.

And yet, as hard as I try—when I look at the folded ears, the wide, round eyes, the cute little tongue tip protruding—all the telltale signs that made the doctors suspect Down Syndrome at the moment of her birth… Well, I can’t see it. I have never really been able to see it.

But everybody else can see it. She and I stopped at a garage sale on Saturday (yes, in January), and the man came hurrying over to us and pressed an angel votive holder into her hands, telling me a story about a young man with DS that he helped to shave.

This is what I find really odd. I always thought I was pretty objective about things. I was and am, after all, able to admit that Julianna was not a pretty newborn AT ALL. And I really try hard to see the Down syndrome in her face—identify it, I mean, the way other people seem to be able to identify it in a glance.

But I can’t. She’s just…so…beautiful.

One of the benefits, and crosses, of having a child who’s significantly delayed is that we get an extended babyhood. She’s five days shy of a year old, and she’s more like a seven- to nine-month-old. At night when I nurse her to sleep, with her little fingers grasping my shirt, or my skin, and her feet pressing against my arm or my torso, I’m frequently overcome. That wild, fine hair, so impossible to control. The long, long eyelashes. The adorable, chewable cheeks. That little nose, that goofy grin! The length of her! Oh, my gosh, she’s so beautiful! And I thought Alex was the most beautiful baby in the world.

I mean, seriously. I know you all think you have the most beautiful children, but…I’m sorry, it’s just impossible. The world’s two most beautiful children both live under my roof. And how did I rate such a blessing?

She’s so beautiful. And she’s been with us almost a year. It’s been rough, and I wouldn’t have chosen it, and I wouldn’t choose it now, given the choice, but I also wouldn’t trade it. Not for anything.

Those moments

And then there are those moments when you shake your head in awe at the miniature people who fill your days with diapers, feedings and playtime.

The thing I love best about children is the way they laugh just because they're happy. Just because we're going to the park, or they like the food placed in front of them, or (in Julianna's case) because Mommy looked at her and smiled.

And I love the way that Alex claps his hands and says, "yay yay yay yay yay!" wiggling his bottom and his legs with excitement because I told him the phone call was from Daddy, who said he's landed in Chicago, which means he's halfway home.

"Did *we* ride two yearpanes" (that would be "airplanes") "in the 'ky, to New York?" Yes, we did, little man. Just a couple of months ago. Another giggle-wiggle: "I LOOOVE New York!"

But at the end of three days without Christian, I am filled with great sympathy and respect for single parents. I really don't know how they do it.

What do you know. Two blogs in one day.

Blogger Blather

They say that if you’re going to have a successful blog—one that has a devoted following—you need to post at least twice a week, and every day is better.

But I’d like to know who has time to read that much blogging? Let’s take a poll. Raise your hand if you delete every single forward you find in your inbox. Be honest now. And I’m sure you all check out every single link you get, too. And all the related links.

What I’d really like to know is how do you get people to read your blog faithfully in the first place?

If I blogged twice a week (much less every day), I’d never get any other writing done.

But then again, if that’s the case, what the heck am I doing writing a blog entry today?

It’s time to get to work, Kate!

Random musings

You wouldn't know I have "so much to say" based on the frequency of my blog posts, would you?

The trouble with a blog is that many of the things on my mind I can't talk about in public. Or, at least, it would be a bad idea to talk about in public. People I'd like to rake over the coals for things they've done...the details of other people's private lives, which I have no business spreading...you know, things like that.

That's the kind of stuff on my mind lately. But since I'm bored at the moment, why not wander a bit?

My weight is up. I had returned to my prepregnancy weight on the 20th of December, when we had Shakespeare's pizza with friends from Ohio, and after that night I've never recovered.

I say that because I'm hungry right now, at 3:30 p.m.

I've been having intermittent trouble sleeping again lately. I finally decided that there is no shame in taking something to help you sleep, as long as you don't get dependent on it. So I'll allow myself a sleep aid a maximum of every other day.

That's on my mind because we rearranged our bedroom last night and I had trouble sleeping, facing a different direction. Oddly enough I don't feel too tired today, though.

We spent the entire month of December painting our living room red. Then we ran out of money, and we still don't have curtains.

I say that because from my chair at the computer, I'm staring at a very bare window. I hate Venetian blinds. Who the heck came up with those things, anyway? They're cheap, they break, they're impossible to clean, they don't block the light... I just don't get it. Christian said to me once, "Well, I grew up with wood blinds. How do you feel about wood?"

"You still have to clean them!" I told him.

I tried cleaning them a while back. I got all ambitious. It lasted through two windows. (Our house has 9.)

Then there's writing stuff on my mind. My flute collection is already available at www.giamusic.com, and they told me it's going to be featured (I think that's what they said, anyway) in the catalog which should be arriving very soon. "Go In Peace," which is a song for congregation and contemporary ensemble, is at the printer's. WLP will be sending that out in some mailing soon, too. And also with WLP I'm in the editing process with my second song, "I Rejoice."

All three of these, by the way, were accepted for publication before Alex was six months old. Now he's nearly three, and I have another child, almost a year old. It boggled my mind to think the publishing process was so long--but now I know what to expect!

I think I'm headed for music writing for a while. It goes in spurts. I do prose for a while, then I get excited about music for a while, sometimes I juggle both...but I don't have that much time. And as much as I want to be writing, it has to take third place in my priorities--#s 1 and 2 are permanently occupied by husband and kids. (Well, for the next 20 years, anyway. After that writing may move up a notch.)

I'm going through this discontent with my new novel, which seems suddenly unimportant and boring to me. I had a great idea for a new novel, which occupied all my spare waking thought and then some for about a week. But once I got it hashed out on computer file, and I discovered what researching I have to do to figure out the gaps...well, let's just say that hours of research are hard to come by. I can write in 1-hour pockets. Research is more a whole day at the library, which I don't have anymore. So until the docket clears a little bit--till I get a few other projects out of the way--I think it's going to have to sit and simmer. The novel is still quite undeveloped, anyway. I think it could benefit from several months' stewing.

And oh yes, there's the Cardinal coming to celebrate school Mass with us at Columbia Catholic. I've done Masses with the Bishop before, but a Cardinal...well, that's a new one. I won't pretend that I'm not a little uncomfortable. You can imagine the kind of chaos we're undergoing at work, trying to have ourselves ready for that. :)

And it wouldn't be right not to mention Christian's Uncle Bob, who passed away last night. Uncle Bob went by "Rock." Take a moment and construct an image of a man who geos by "Rock." Now, throw your assumptions out the window. His demeanor was as opposite that as it could be. Well, almost as opposite. He was a little man, really, thin and quiet and gentle, very emotional, at least, that was my limited experience of him. He sent turkey joints to the Basi family every Christmas. Turkey Joints are a staple of Christmas tradition in my husband's family--so much so that they forget how weird it is to say, "Here, have a turkey joint!" Then people recoil and say, "WHAT????"

I do it now, too, despite having had the normal "What the...." reaction my first time. It took me 2 or 3 years to try one, but now I enjoy them. To those who don't know turkey joints, just Google it.

Uncle Bob, Christian's godfather, sent wonderfully sentimental cards in which he underlined every single word, and the important ones two or three times. What a good guy. He will be missed.

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.