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.

Back to School

I am so glad that I am not in school anymore…but there are times when I miss the excitement of it all.

Last night, Christian and I took the kids out to the Quad at MU for Marching Mizzou’s “concert on the quad.” These sorts of things are much more fun with kids than without. Alex wanted to run up and down between the circles of band members warming up in sections, shouting, “Tuba! Tuba! ’Nuvver tuba! Dums! Dums! Eveywheah dums! Foots! Foots!”

And the best part was that I got to go wandering in among the band members without feeling silly or out-of-place. I started feeling nostalgic for my two years in Marching Mizzou (one of which, incidentally, I detested). As we watched the concert on the Quad, I remembered, and missed, the silly cheers we used to pass the time. Not much has changed in the fourteen years I have been away from M2. The band plays the same arrangements of the same fight songs, and does almost the same dances.

As the freshmen pelted through the Columns toward the free Tiger Stripe ice cream waiting at the south end of the Quad, kicking up grasshoppers and mites, I thought for a moment or two how much fun it would be to be back in college again.

And then I regained my senses.

A review

This review came to me weeks ago. But in my defense, I have had an infant who had heart surgery since then. And I am toilet-training a two-year-old.

"The story took on a life of its own and pulled me right in. This book turned out to be a wonderful surprise. It is a must read for anyone who loves historical mixed with a little romance, lots of action, and a whole lot of mystery."

Check out the full review at

http://www.coffeetimeromance.com/BookReviews/Thebeggarsqueen.html

In praise of a good pen

These days, I do a lot of my writing longhand.

Yes, like all the rest of you, I prefer to write on the computer. But with a 2 year old and a 6 month old (who goes to the doctor a lot), computer time is at a premium. So I have broken out the 3-ring binders, the college-rule notebook paper and the pens.

And I have discovered that Anne Shirley was right: the pen makes a difference in what you are able to write. It's really hard to concentrate on a good story when the pen grates along the page, bumping and vibrating the hand.

A good pen warms the creative juices and helps the words to flow. A good pen makes the writing experience enjoyable. It keeps your hand relaxed and lets you write longer. It doesn't give you something to say, but it removes one of the barriers to getting what you have to say out of your head and into the greater world.

And it's really not any slower to write longhand than it is to type one-handed with a crying baby on your shoulder!

(Which, incidentally, is a far more formidable barrier to creativity than lack of a laptop, or a bad pen!)

Perfect moments, and not-so-perfect moments

Last night, the kids went to bed by 8:30. Yes, that was a plural: KidS. For the first time in recent memory, Christian and I had the chance to sit down—together!—on the couch, turn off all the lights, and watch a movie. (Well, part of one, anyway.) I reveled in the sensation of reclining in my husband’s arms with my head resting on his shoulder, having some time just to be lovers instead of parents. It was a perfect moment. How many of those do you get?

We went to bed at 9:50. The light hadn’t even gone off when Julianna began crying. That was how it went for the next hour: three minutes of crying every 20 minutes. Just when we would almost fall asleep, off she went again. We tried everything we could think of, beginning with Infant Tylenol and ending with the carseat. At 11p.m. I gave up and went downstairs with her, bracing myself for a night of stolen seconds of sleep.

The way the night went isn’t really the point (in case you’re curious, I ended up with probably 5 hours of sleep, in bits and pieces). The point is that the awful night came right after the perfect moment. And this reminded me of something I’ve noticed before: it’s as if the universe prepares us for the hard times by giving us a single beautiful moment—to fortify us for the journey, as it were. To show us what’s waiting on the other side. To let us know that the fight is worth fighting.

When I write it, it sounds very over-dramatized, but I think that the universe displays the same lessons and tendencies over and over again—sometimes in big ways, but more often in the everyday occurrences.

There is a spiritual dimension to this reflection, but I’m going to bypass it today. I didn’t intend for this page to become a religious blog, yet every entry seems to express some way in which the divine touches the ordinary.

Today, however, I am fuzzy-brained with a building cold bug and lack of sleep. I could spend all day revising this, but that wouldn’t be the best use of the baby’s nap time, now would it?