Random tidbits

I cannot keep up with anything this week, so you get the headlines overview (and perhaps a brief editorial).

JULIANNA IS CRAWLING! Not by herself, but definitely she is driven to move. I can tell that she's going to be a holy pain in Alex's you-know-what once she gets moving. She wants to pull his hair and lick him. He loves it. But then, he can still run away. Or sit on her.

ALEX IS WRITING LETTERS! Not well, and not by himself, and his A begins as an H and then he draws a line across the top. But jeez, he's three!

BASI'S ORGANIZE NEIGHBORHOOD TO OPPOSE TRAIL. We all bought for the gorgeous privacy of a woods and a creek in between our streets, and then we found out that our green space was on the city's list to put a trail through. Part of my last few weeks has been running all over the neighborhood going door to door collecting signatures, sending emails, and writing a letter. And today I hand-delivered it to the city council offices and the project manager. I can't help feeling bad for him. He's a very nice guy. We just don't want this trail in here, and we think we should have been told before we paid...well, a lot of money for our houses.

SALES!!!!!!!!! I have clips in hand now--a personal essay for Family Foundations from CCL, and an article for AIM (World Library, who also publishes my octavos). And I received an email last night asking me to write an article for another magazine. I couldn't get to sleep last night. Plus, in the last two weeks I have found out about two people locally and one on the East Coast who bought my flute collection. So I am very excited.

THE GRASS IS GROWING! Which is good, b/c I'm getting very tired of replanting the patches, and trying to figure out what makes it grow in one spot and not in the one right next to it, which is by all indications completely identical.

Speaking of conditions that change without apparent rhyme or reason...can anyone out there explain to me why I 70, which is a mile south of us, sounds like it's right on the other side of the creek sometimes, and other days we can't hear it at all? I thought it was wind direction, or temperature, or humidity, but after living here almost a year I cannot figure out why I hear it sometimes and not others.

Well, I have a wakey baby. Time to go.

Submissions and baby development (not related)

The last week has been a real zoo…stomach virus, Triduum, no sleep for three nights out of four…so I haven’t done much writing in the last week. Today, however, I managed to put together two short story submissions.

It never ceases to amaze me how long it takes to get a submission ready—music, fiction or nonfiction. Even a query letter, for Heavens sake. First, get it written. (Weeks. Months.) Second: market research. (At least two full mornings. If you count the internet research, call it two full days.) Third: rewrite based on what you decide on market. (One day, usually.) Fourth: format submission (two days in and of itself, so far. Maybe that will shorten up as I get more experienced.)

Tomorrow’s task: the Post Office.

But tonight, I intended to write about Julianna’s development. In my kids’ scrapbooks, I do a series of 6 pages on their development through the first twelve months. There are 2-4 pictures per page and a lot of cramped writing, in which I detail ad nauseum every new skill.

However, Julianna’s first year ended before she did an awful lot of things that I am desperate to chronicle. So I think I’ll torture you all (however many or few of you there are) with them instead.

For instance, in the last couple of weeks, Julianna has become much harder to keep entertained. For a child with Down’s, she has always been interested in the world, but lately she demands to be entertained, her perspective changed; she demands interaction much more often and for longer periods of time. This afternoon, I had her on my hip as I was trying to do household tasks. I had forgotten doing that with Alex. He found it all incredibly interesting, when he was 8 months to…well, he still does; it’s just that now he can go pull a chair over and see what I’m doing for himself.

Today, Julianna lunged forward, wrapping both hands around the lip of the washing machine and resting her chin on them, as I added detergent to the washer and started the diapers. (Imagine having your head in *that* smell. Whew!) Tonight I sat down to read her one or two books—she sits with me all the time while I read to Alex, but those books are way over her head. So tonight I wanted to do it just for her. She shrieked when I set her down—she thought I was getting ready to leave her again. But when she saw the book, she settled down immediately. She lunged right and reached with her left hand to turn the pages of “I Am A Bunny” by Ole Risom/Richard Scarry. And then she was so mesmerized by “Brown Bear” that I had to keep reading. We went through 7 books before we quit.

I keep getting complacent, and forgetting that Julianna is moving beyond what Christian calls the “blob” stage. She’s so slow to move that I just forget, even though I know better.

And now it’s 9:08 p.m., and Christian and I have a date to practice flute and piano together, so I must quit without revising, or waxing eloquent anymore. Your loss. ;)

Of Julianna, and planning for the third

Lately we've been discussing how long to wait before we try to conceive again. I'm 33--no great age, but my mother had her last at 33, so it's on my mind. Because I'll be having a C-section, Julianna has to be able to walk before the next baby comes. At 6 months, when she was sitting up, we were sure that she was going to be close to walking by a year.

And of course, she's not even crawling. In fact, she's not even transitioning into and out of sitting. (Actually, she started this weekend. She had a good developmental weekend.)

So now I wonder if our plans for a baby a year or so from now are too optimistic. And in my fears, I also realize that I'm harboring deep fear, insecurity and guilt. I am the primary "therapist" in the family, and I feel like I don't do enough work with her. So I think it's my fault that she's not developing more quickly.

This entry is not coming together well, so I think I'll err on the short side. A wonderful man at church this morning told me that God would provide. And he can say that, because he has a child with DS who is 1 year and 2 weeks older than her younger sister.

Easy to view from the outside--now that both of his kids are grown.

Harder to imagine trying to live through.

Small triumphs

This morning, Julianna grabbed a cloth napkin from the table beside her and proceeded to play peekaboo for 15 minutes.

A small triumph, to be sure, but a triumph nonetheless!

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.

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.

The Memory Keeper’s Daughter

At the National Down Syndrome Congress convention in Kansas City at the beginning of August, we had the opportunity to hear Kim Edwards speak about and read from her book, The Memory Keeper’s Daughter. Afterward, she signed books, and we bought a copy and had her inscribe it to Julianna.

Christian read the book the week following the convention, while he was on vacation. “This book is really depressing,” he said at least three times a day. And yet he devoured it. He read at every moment—an hour at a time, lounged across the couch, sitting at the table, bringing it with him wherever we went.

At the end of the week, Christian was a new man. Relaxed, settled, back to his old self—he hadn’t been himself in so long, I had ceased to notice it. And he knew it, too. He was the one who pointed it out to me. During that week, he began laughing at Julianna, playing with her, calling her “cute” for the first time—he’s not a baby person; it took him months to admit that Alex was cute, too. He has been a wonderful father to our daughter, but that week, he bonded with her.

Probably it is coincidental that he happened to be reading that book at the same time.

But now I’m reading it. And from the moment Phoebe was born, with her black hair and her delicate skin, in my mind she had Julianna’s face. Phoebe is Julianna. The shock of discovering that your newborn child has Down Syndrome, the terror, the revulsion you don’t want to feel at the idea that it could be true— I recognized all of it. But when the father told his wife that their daughter was dead, my psyche reared up in a white-hot blaze of grief, of outrage, even though I knew it was coming.

I ran to my daughter, swept her up, hugged her as close as I could, and I said, “Oh, my darling, beautiful baby girl, how could anyone give you up?” And then I started crying.

Forgive me if I ramble a bit today. I try to stay brief in my blog, but I haven’t reflected on our experience as parents of a child with DS in a while, and I finished my first draft of my new novel yesterday, so I think I have earned a little diversion.

Sunday on the way to the band concert, Christian told me to expect that lots of people he worked with would want to see the kids, particularly Julianna, who hasn’t been shown off around campus as much as her brother was when he was born. (For several reasons—hospital and doctor visits, plus the general unwieldiness of having two kids along, the move, etc.) People keep asking his boss, “Is Christian really doing OK?”

I found these questions confusing. Then I realized that people have been asking me, too. And I realized, too, that they’re asking because they don’t realize that we have settled into normal life. I think that for a lot of people, the idea that life could ever go on as usual seems impossible. I remember one exchange in particular, with a wonderful woman I know, who spoke of a family member with DS—a family member who is now deceased. I came away from that conversation with the knowledge that many people are deeply, deeply uncomfortable around people with disabilities, conditions. I say that completely without malice because I was (and remain, to a certain extent) one of those people. It’s a long-standing shame of mine that I lived my life unable to look past a person’s disability.

Because of that, I am supremely grateful to have been given the opportunity to love–passionately, fiercely, and in awe–a little girl named Julianna Margaret. A baby who insists upon rolling onto her tummy, even when she knows perfectly well she hates being on her tummy. A little girl with the goofiest smile I have ever seen, and a sparkle of mischief in her eye. A beautiful, drop-dead gorgeous, baby girl with a heart-shaped face, long eyelashes, a rosebud mouth, and long dark brown hair that gets into impossible rats five times a day. Who won’t go to sleep during the day, and rivals her big brother for loud vocalizations. A baby so determined not to miss a single one of life’s experiences that her little thumb migrates to her mouth even while she’s nursing, and then gives me the innocent look that says, “Hey, what’s up with this? Why isn’t it working?”

Yes, we’ve been in crisis mode this year, hopping from one hospital to the next—four hospital stays! Heart surgery! A new house! Selling an old house! Toilet training! But Christian and I toss the baby back and forth across the dinner table when one person needs both hands. We dissolve into laughter when she sticks her feet up in the air. We make complete bumbling fools of ourselves, mimicking her silly baby noises. We live for making her smile, and keep a sense of humor when she’s overtired and fights going to sleep.

In other words, we have a baby. And that, in essence, is the point that I believe Kim Edwards was trying to communicate in this book. And the writing truly is spectacular. I’m only 90 pages in, and I have a feeling that I, like my husband, will be changed by the reading.