So I was talking to our new neighbor the other day. She was in her backyard, smoking a cigarette and sanding the finish off an old dresser drawer, and I was in my backyard playing with Archie, Kit and Jack.

This new neighbor made a remark about how close in age the kids are, so I told her Archie’s age, and then Kit and Jack’s age. She paused for moment to take a long draw from her cigarette, and then exhaled, breathing her words together as if they were one and the same, “So-then-they’re-twins,-right?”

“They are,” I confirmed.

“Are they identical?” she wanted to know.

Okay. I’ve answered this question many times, and each time I wonder why the person asking doesn’t see Kit, a girl, and Jack, a boy, and just know that there’s no way the two can be identical twins.

So I respond to this new neighbor the same way I’ve responded to many people before her. “Kit’s a girl,” I say. “And Jack’s a boy.” And as I answer I gesture toward each child in turn.

Kit, at that moment, was twirling around the backyard, wearing a pink princess costume dress, plastic high-heeled shoes, and lots and lots of dime-store jewelry. Right then Jack was playing t-ball with a red bat, blue stand and white ball. You couldn’t have picked more stereotypical activities for my girl and boy at that instant if you’d tried.

The neighbor puffed on her cigarette again, and then asked, “Yeah? So?”

“Yeah, well, they can’t be identical if one’s a girl and the other’s a boy.”

“No, they can,” she retorted. I could tell by her tone that she was adamant in her belief, too.

“How?” I wanted to know.

Apparently she has a sister-in-law with boy-girl twins who are identical, this new neighbor explained to me. “They did that DNA test, and everything,” she assured me.

I backed off then, not wanting to begin our relationship, this new neighbor’s and mine, on the wrong foot. But after the kids and I finished playing outside, after we’d picked our outdoor toys up and headed inside, I consulted Google just to make sure I was right as the neighbor seemed so resolute in her insistence. And I was.

Aside from this conversation with my neighbor, there are other questions I’m regularly asked about the twins. For instance, I’m often asked if Kit and Jack are “natural,” or if I took some sort of fertility drug, or endured another type of fertility treatment. From the time I was pregnant perfect strangers were asking me that question. The answer is no, but I wonder why I even need to provide one in the first place, why it’s anyone’s business after all.

Another question often posed to me by strangers and acquaintances alike is whether I plan on having more children. Honestly, Kit and Jack were newborns when I started fielding this question, and I still find myself answering it today. Again, I don’t know why the size of my family is anyone’s business other than John and my own, but still I’m asked this question all the time as if it were a natural part of conversation’s flow. My speculation aside, the answer to this question is also no.

And then there’s this local twins club that I hear about all the time. I’ve been told more times than I can count that I should join the multiples club. I always answer this suggestion the same way, assuring the person with whom I’m speaking that, yes, I’ve heard of the multiples club, but that, no, I haven’t joined. That response always prompts the asker to wonder aloud why I wouldn’t want to join, and I always explain that I don’t really have an interest in such a club.

Now, I’m sure there are benefits to belonging to a multiples club. I don’t dispute that at all. I bet they’d teach me all sorts of interesting twin facts, and maybe even some strategies for coping with discipline issues unique to twins. I hear our local organization has a really wonderful consignment sale twice a year featuring lots of clothing, and accessories, and baby paraphernalia such as strollers, and car seats, and cribs. I’ve been told, too, that the club here where I live supports new twin parents by bringing them meals and pitching in when they can. This is all good stuff, to be sure. But still, the multiples club wasn’t for me.

Sometimes, though, these explanations aren’t enough for the asker. She wants more of an explanation. I may hem and haw a little, and beat around the bush as best I can, but often I’m pushed to reveal the real reason I never wanted anything to do with the multiples club. It’s a long, awkward answer that has to do with Archie’s prenatal diagnosis, and how I wanted to know what it felt like to have a typical pregnancy, and how Archie had leukemia when I was pregnant with the twins, and how that made conversations with new acquaintances, like members of a multiples club, uneasy, and how… well, I could go on and on. As I said, it’s a long and awkward answer that a person either understands completely, or misunderstands entirely.

But that’s me, you know? My life is an open book. Either you’re reading along, enjoying my story, or it makes no sense to you at all. Kind of like my answer to the multiples club question.

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I just finished reading this incredible and moving post by Emily at Lovely and Amazing.

If you haven’t read her post yet, I hope you’ll take a few minutes to read Emily’s masterful description of a nightmare dream she’s endured, and what she’s learned from it. In it she’s managed to sum up so much of what I’ve been thinking recently about Archie, and how he is more alike his peers than he is different from them, but also how he is so, so, so apart from his peers, but that apartness is neither good nor bad, it simply exists.

I worry sometimes that we parents of children with special needs try so hard to prove how alike and able our child is that we forget to be grateful for our children’s true selves: not who they are in terms of their disability, but who they are as they’re learning to exist in harmony with their diagnosis.

I wrote once that Archie’s diagnosis is so much a part of him and apart from him that naming it aloud sounds like stating the obvious, but also feels somehow unnecessary and needless. What Emily writes in her post “My Own Demons” reminds me of this sentiment, and reminds me again to take this sentiment to heart and make it sing.

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Morning with the Moores

I love the springtime when everyone is outside, cutting grass, planting flowers, enjoying the sunshine and warm air. We talk over our fences and in our driveways, my neighbors, John and I, and the kids holler hello while waving wildly to the same lady, the same man, several times in a row until this lady, or that man, stops what they’re doing to visit with my outgoing offspring.

Yesterday morning my parents watched Archie, Kit and Jack while John and I went to the Piedmont Plant and Flower Festival at the farmer’s market. We go every year, John and I, to replace the plants that didn’t survive the winter, to fill in the gaps in our garden. We’d hoped to take the kids with us this spring, but since Archie, Kit and Jack have outgrown (or should I say ‘grown to outsmart?’) strollers John and I decided we’d make better use of our time out if we went without the kids.

And we did. Last spring John discovered a vendor specializing in wildflowers native to South Carolina. Nearly all the plants we purchased from this vendor last year did well, so we visited her again yesterday. Today John planted our haul and already the garden looks established and full, those wildflowers mixed in with the roses, this unique concoction set off by our collection of typical nursery fair.

While the kids were napping this afternoon, as John was watering the flowers, I told him that we really need to have a cocktail party some evening soon so we can mill around outside with our guests, sipping lemon drops from these vintage glass cups, listening to Jamie Cullum, and soaking in the scent of the orange blossoms blooming along the fence. You’re all invited, of course, when we have this party I’m planning in my head, if you’re interested. And I really hope you’re interested.

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Morning with the Moores

Last spring John and I dug and then tilled a flowerbed in our backyard. We filled its sunny parts with yarrow and lambs ear, lilies and peonies, and packed the shadowy places with ferns and azaleas, hydrangeas and hostas. We made way for a variety of herbs, lots and lots of herbs, and reserved a special spot for our roses.

In it we planted English roses, antique roses, floribundas and hybrid teas. We ordered them online, and we put them in the ground bare-root, clustering them together in no particular order. As they grew last summer, we didn’t prune the bushes, but instead left the roses to grow together, their runners intertwining in a mish-mash of color and texture, until we couldn’t tell where one flower ended and another began.

Last week the roses in our backyard started to bloom. One vine of Cecile Brunner, which last summer stretched and shimmed it’s way up and over a portion of our wrought-iron fence, now boasts wide-open heads, hundreds of them, and their fragrance reminds me of rose-scented candles, and sachets, and perfumes, all aromatic in their own right, but not at all as perfectly-pungent as the real thing.

This particular vine, the Cecile Brunner, reminds me of the house we lived in when Archie was born, when the twins were born, and the back porch we had there with the pergola over it, and how that pergola was covered by climbing roses, all Cecile Brunner and Royal Sunset vines. John had planted the roses himself Archie’s first February, burying the roots deep down in the earth so they’d stay insulated from the cold and bloom that coming spring. And then that April John hung a red baby swing from one of the pergola’s beams with huge, stainless-steel hooks, and in it I’d push Archie in the afternoons, when he’d wake from his naps, singing every song I knew as he pushed saliva bubbles out of his mouth with his pink, puffy tongue.

I haven’t seen the pergola at the old house in over two springs now, and we dropped that baby swing off at Goodwill a long time ago. But this weekend John and I spent time in the backyard, this backyard, with Archie, Kit and Jack, playing and planting, weeding and watering. And we all took a little extra time to smell the roses.

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Morning with the Moores

Sometimes I’m sure this parenting thing will kill me. It seems as if all three of my children have recently become so defiant that it feels as if I’ve completely lost my ability to maneuver through our days together. It’s not that Archie, Kit and Jack are bad, bad, bad. In fact, they are usually respectful, considerate and mindful children. But now they’re also irreverent, selfish and willful, as most young children sometimes are, and it’s these negative personality traits that are causing so much discord in our home.

I use time-outs frequently. I stand my ground once I’ve said no, or yes, or brokered an ultimatum. I try to be consistent, and for the most part I am, at least as much as a mother of three young children can be. There are even moments during the day that I sense a situation has reached the point of no return so I know to walk away from it, count to ten, claim a little clarity before I confront the children again.

So suddenly it seems as if everyone’s been right all along. All those people who’ve commented that I have my hands full were right, after all. But I don’t want them to be right, all these people whom I see often and know the kids and I well, as well as all the strangers in the grocery store, the doctor offices, the preschool pick-up lines.

That phrase, you’ve got your hands full, makes me feel as if its an excuse that is an invitation for failure, and I don’t like that. I want to appear competent, maybe even successful at what I do every day, how I handle the roll of mother to my three children. It seems to me that I created this mess, this family packed full of these three babies born so close together, so I should be the one to handle it, care for it all.

I say this, but just this morning Kit refused to get dressed, so I told her that she had to, that it would be time to leave soon to take Archie to school, and still Kit remained uncooperative so I held her down, forcing her shirt over her head and pulling the pants up over her kicking legs. And while I was doing this, forcing my daughter’s submission no matter what, I wondered what I was teaching her, this girl of mine. I don’t want Kit to learn that might makes right, because it doesn’t, it shouldn’t. Only a mother whose hands are full would act hypocritically, believing one thing but teaching another.

And even though their defiance frustrates me, inside in a secret part of my heart I am glad for it, too, overjoyed by it, really. I want my children to be freethinkers, to know their own minds and follow their hearts. I want them to defy convention and do right by their dreams, the ones I’ll help them imagine as well as the ones they’ll dream up themselves. I want them to be like I was, once upon a time, before I learned to doubt myself, my abilities and my capabilities.

I was thinking about all this, about how to raise obedient yet thoughtful children, yesterday morning as I was out running while the kids were in school. The trees, and grasses, and flowers along my route are blooming, and their lushness reminded me of times now gone. I passed under a huge oak and thought of the gigantic trees on my college’s campus, all tagged and registered, pedigreed. That made me think of the academic quad, and the last time I was there, for my brother’s commencement ceremony.

Then I remembered Archie’s first spring, and the evening I sat holding him, months old, in front of the television as I watched Richard Rodriguez give Kenyon’s commencement address on CNN. I remember crying as he spoke, my tears wetting the topknot of hair on Archie’s head.

I learned to love Rodriguez at Kenyon, in a political science class. At Limestone I tried to teach my developmental writing students to love him, too. And there I was then, newly graduated myself into a special kind of parenthood I never imagined, listening to Rodriguez and really hearing him, maybe for the first time.

After my run, before I left the house to pick my children up at school, I searched the Internet for that commencement address and I found it. I found it, and I watched it, and I cried again filled now by a new knowingness, granted to me by the passage of time. Sometimes I feel as if I’ve failed my potential, deciding as I did to stay home, to love, look after, dance with and discipline these mischievous babies of mine, day in and day out, no exceptions, but yesterday I was reminded that I am today the woman I was meant to be all along. This is what was intended after all.

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Morning with the Moores

Kerri, Archie’s physical therapist at school and all-around great gal, shared this link with me to a business her friend just opened called Scrapbook Blogger.

If you visit the site you’ll see that Kerri’s friend, a mother who blogs about her children but does not keep a scrapbook or baby book, developed a software program that would enable bloggers like herself “to download all or part of a blog, add scrapbook-esq backgrounds, and then print and bind their blogs into a hard copy, coffee-table style book that can be cherished and passed down from generation to generation as a true family keepsake.”

Add this to my long list of ideas titled, “Hey, why didn’t I think of that?”

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Today was most definitely one of those days, although I did manage a trip to our neighborhood playground this afternoon with the kids, which was enjoyable for a bit, at least until the kids’ enthusiasm fizzled and the twins wandered off through backyards, between houses, one this way and another that way, leaving me to holler after them and forcing me to sling Archie on my hip and decide whom I should chase first.

But before all that happened, we really did enjoy our time at the playground. Kit ran up the ladder and slid down the slide so many times she made herself dizzy. Jack sat on my lap, his legs wrapped around my waist, as I swung back and forth on the swing, back and forth, higher and higher. Both Kit and Jack laughed and laughed, losing themselves in the weightless-tummy feeling of the swinging and the sliding, and I delighted in their revelry almost long enough to forget how disagreeable they’d been all morning.

And Archie… Oh, my sweet Archie. As I pushed him in the swing he sang, “Playmate, come out and play with me… And bring your dollies three, climb up my apple tree…” He worked his way through this song I taught him, that my mother and father taught me, all the way through to the end, finishing it with great flourish.

He picked the tune himself, and sang it without assistance as I sat there listening to his lilting notes, remembering myself as a little girl swinging in my own backyard and belting out that same song myself. I watched Archie swing, and listened to him sing, and in my head I saw how year flows into year, time tumbles over itself, and all we really have after all is life loping forward on long legs, a child reflecting his parent, she reflecting her parents, and her parents reflecting their own, over and over again without end.

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I discovered this blog, Daniel Drinker, by way of Beth’s blog, Not that you asked… .

I’m completely smitten with Dan, and his brother Will, and the entire Drinker family, really. A few weekends ago I played Dan’s endorsement of Barack Obama for my family, my parents, too, and even my father enjoyed Dan’s candor regarding the presidential race.

If you visit Dan’s site, please take time to watch as many videos as you’re able. I know I spent an entire Saturday afternoon with Dan and his family, smiling, laughing and wiping tears from my eyes, as I continuously called to John, “Come here! You have to see this one, too!”

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It’s amazing, really. I was doing chores around the house, picking up discarded toys and folding the laundry, going through piles of papers left on the kitchen counter, deciding what could be thrown away and what should be kept. Archie is at school this morning, but Kit and Jack are home. They were playing together, the twins, pushing unopened packages of diapers around the floor, laughing and talking, happy to carry on as they were. I’d turned the Martha Stewart Show on to see what recipe she was cooking today so maybe I could try it, too.

So I’m listening to the kids play together, I’m cleaning up the house, and I’m half-heartedly watching Martha cook chicken cutlets on her big, fancy stainless-steel stove when suddenly the kids have stopped chattering, stopped playing and they’re starring at the television.

I stop to watch, too, because Diane Sawyer is talking and the screen is showing the White House, and the Pope, and the President walking with his wife and daughter. It’s kind of neat, really, seeing all the pomp and circumstance, with the parade and the music and all those flags flying in the wind, but what’s neater, and amazing, is how the twins are transfixed, watching it all. It’s as if even two-year-olds get that some things are a big deal, are worthy of note taking no matter your spiritual beliefs or political leanings.

This morning the twins and I stopped at the grocery store after we dropped Archie off at school. A few days ago Kit saw an advertisement in a circular for pull-up diapers with Disney Princesses on them. John helped her rip the ad out of the paper and she’s been carrying it around with her ever since, careful to place it on top of the bookshelf beside her bed while she sleeps. John spent some time striking a deal with Kit, getting her to agree she’d try her best to pee and poop in the potty if we bought the princess diapers for her. So I bought the diapers and she’s wearing them now, and already we’ve made two successful trips to the potty initiated by Kit and even still her diaper is dry. Jack’s joined her, too, wearing a princess diaper himself, and he’s enjoyed success as well. This is good news here in our household.

It’s odd, really, that Kit and her brothers should adore the princesses so much. I remember that Kit was sent home from the NICU with a receiving blanket upon which was printed Snow White, Belle, Cinderella and Aurora. I had no idea who these women on this blanket were until Tiffany, my helper when the twins were born, swaddled Kit in it one morning saying, “Oh, Kit… here’s your princess blanket. Do you see Cinderella, and Snow White?”

“You know their names?” I asked Tiffany, incredulously. I was never much of a girly-girl, never involved in typical little girl, or big girl, things. The fact that this blanket was covered with characters who had specific identities had escaped me.

Tiffany laughed first then replied, “Yes, and you will too someday.”

She was right, that Tiffany. I know the names of these princesses, as does John, as does Kit, as does Jack, as does Archie. Last night after dinner Archie found the bag holding all the princess figurines and set them up in front of himself, between his legs, naming each doll as he placed it on the kitchen floor. And then he began to sing, “Dance, princesses, dance, dance…” belting out more of his made-up song as he moved the dolls around as if they were twirling and whirling around that dance floor he’d created. When he stopped singing he declared, “All done song!” and “Stop dancing, princesses!” then he got the bag and announced, “Time to clean up princesses,” picking up one at a time and putting it back in the bag, bidding farewell to each by name.

To watch Archie carefully clean up these princesses you’d never know he’d just flung a cup of pudding off the table, across the room, hitting the cabinets and spattering vanilla pudding everywhere. For whatever reason Archie’s back to throwing bowls filled with food, cups brimming with milk and juice, and spoons sticky with leftover food. I don’t know why he does it, but every time he does I think I’d like to pick him up and throw him, too.

But I don’t, of course. Instead I correct him, and I try not to yell, and I clean up the mess, and then I clean Archie up, too. And it’s usually around the time I go back again to the spill, trying to jam a corner of a wet dish rag into the crack in the cabinet, between the molding and the door, that I decide this throwing of food is karma doing it’s best to make sure I’ve eaten my just desserts.

When I was in the fifth grade, on the last day of school, I participated in a food fight that completely decimated our elementary school’s cafeteria. Actually, I didn’t just participate in the fight, I kind of organized it, or at least that’s what the principal said I did.

But I didn’t, really. Or maybe I did. It’s hard to tell where these sorts of plans begin, and how they spread, and who may have had a chance to end them before they go too far. I am sure, though, that when the principal came into the cafeteria immediately following the food fight, asking the perpetrators to come forward and identify themselves, that I was the only student who stood up and walked to the front of the room. The principal wanted all students who threw food to turn themselves in, but I was the only one who did. The floor was filled with food, the cafeteria’s painted cement block walls had food and milk spattered across them, too, but I was the only one who came forward.

Maybe this is the reason I didn’t get in very much trouble at school, or home after all. I’d been honest, to a fault, as I’d always been before and have always been ever since. If you know me well you’re smiling as you read this, I’m sure, because you know this to be so.

Yesterday Archie and I were early to pick Kit and Jack up at school. We sat for a while in the car and I watched the clock. We’d arrived really early, Archie and I, so I decided we’d leave, drive around through a few nearby neighborhoods and look at the houses, then come back to claim the twins, take them home.

So on our drive I turned into a neighborhood and slowed the car to look at house with a sale sign stuck in its front yard. It was a beautiful home. It reminded me of our house now and our house when Archie was born, and seemed as if this house could be the end result of these two houses smashed together. I wasn’t talking to Archie, seated in the backseat, and I didn’t even think he was paying attention, assuming instead that he was lost inside his own thoughts, faraway somewhere else contemplating his day.

And then he said, “It’s nice.”

So I turned, looking over my shoulder at Archie instead of the house, and asked him, “Did you just say that house was nice?”

That’s when he looked up at me and answered, “Yeah.”

“I like it, too,” I replied wistfully as I turned our car around, driving out of the neighborhood, onto the road, and then back again to wait for the twins.

When we pulled into the parking lot at the twins’ preschool a second time Archie matter-of-factly announced, “We’re still early.”

And we were. So we got out of the car and shuffle-ball-change stepped our way down the sidewalk to the courtyard outside the building’s entrance where we climbed on the stone benches there and jumped off them to the count of one-two-three, both of us, individually and then together, and I don’t know if people were laughing because they thought we were ridiculous, Archie and I, or because they wanted in on our fun, too.

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Morning with the Moores

How is it a week can seem to both fly by, yet take forever to be finished? I don’t know the answer to that question, but I’m sure it’s what happened last week and why I haven’t found myself back here, writing more, until now.

I’ve collected so many stories over the past few days, but here I am now on Sunday night with time to talk but no energy left with which to type. So I’ll do us both a favor and save the exposition until later, sharing now only the week’s rising and falling actions.

Archie had an echocardiogram first thing Monday morning. It was scheduled as part of his oncology treatment protocol, an annual touch point to determine what effects, if any, the chemotherapy he endured had on his heart. Archie was excited to visit the doctor’s office where “a lady’ll take-a pictures of my heart,” his enthusiasm propelling him through the parking lot, the office corridors, into the exam room.

But as soon as he saw the room’s lights were dimmed, and as soon as he regarded the heavy machinery parked in the corner of that room, behind the exam table, Archie’s excitement waned and his bouncing smile was replaced by a huge, hulking frown.

He tolerated the exam, though, following directions and acting moderately agreeable, although whiney. He even obliged the technician when she asked him to sit up, and then lie down again over a bed pillow she followed in half, dangling his head back over the pillow while his breastbone stuck way up high.

Since the technician wanted measurements of Archie’s heart, from top to bottom, she had to stick her wand under his neck, around his collarbone. This is Archie’s least favorite position and most disliked measurement during an echocardiogram, but still he did as the technician asked. Archie held himself as if he were filled with brave resolve, but the tears falling silently down his cheeks let me know that even four-year-olds aren’t ready to act like big boys all the time.

Bless his heart.

Later in the week Archie had an appointment at the oncology clinic, a routine visit to check his blood counts and liver enzymes. “He looks great!” Dr. Schmidt told me as he smiled warmly. He and I sat facing one another, nearly knee to knee. Archie sat on my lap, between us, and listened intently as we spoke. “His blood is beautiful and his echo read normal.” For Archie, neither of these diagnoses are small things.

Dr. Schmidt reached for Archie then, taking his shoulder in his hand. “It’s so good to see you,” he said once, and then repeated him self again.

Yesterday we went to my nephew Rhys’ Baptism. The deacon who preformed the sacrament asked Hayes, my brother’s oldest son, and my children to help him by holding the Chrism, another consecrated oil, and a towel. Archie wasn’t interested in participating, but Kit and Jack were.

The deacon handed Jack the vessel holding the Chrism, instructing him how to hold it correctly. Jack did as he was told, turning his palm over this way, spreading his fingers out that way. When the deacon instructed Jack to take the lid off the container, I watched Jack’s fingers shake nervously as he tried his very best to do as he was told. While his fingers were shaking, my chest puffed up with pride.

My chest was filled with pride earlier this week, too, when Kit and Jack went to their first dentist appointments. They both behaved beautifully, and the dentist remarked how mature the twins seem to be. “Two-year-olds acting like five-year-olds!” she exclaimed.

As I watched the twins in the chairs, getting their teeth cleaned, cooperating with the hygienists, I couldn’t help but think of John’s father, a dentist himself who thought highly of well-behaved children, and imagine how pleased he would have been with these two, his grandchildren.

As I buckled Kit into her car seat yesterday on our way to Charlotte for the Baptism, my little girl reached for my necklace. As she held the pendant in her hand, turning it this way and that to get a better look, she breathed sweetly, “Oh, Mommy… I like-a your necklace!”

I thanked her, of course, and then she stuck her feet in my face and asked, “Mommy, you like-a my shoes?”

I’d like-a to tell you more now, typing it here, but John is sitting upstairs outside Kit’s room, working on his laptop in the dark, and I’m sure he’s eager to trade places with me.

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That was the Cooper River Bridge Run tagline this year. So my brother, his wife and I accepted the challenge and ran the 10K race, from Mt. Pleasant to downtown Charleston, Saturday morning. There were approximately 30,000 runners and walkers who participated in the race, including a handful of very fast men and women from Kenya who agreed that this year’s weather ensured the race was “a tough run, very tough.”

Patrick, Camille and I saw all kinds of runners, but my favorite participants where the parents and children, mothers and fathers passing their love for running onto their daughters and sons. On my way up the bridge I was passed by a man, a father, who was holding his adolescent daughter’s hand, pulling her up the steep incline behind him.

This man and his girl made me think of my own children, left back at the beach house with their grandparents, my parents, who were selfless enough to spend their morning watching Archie, Kit and Jack. I’d like to run that bridge one day with my children, towing them up with me. But I’d like it better still if one day, years and years from now, they took turns holding my hand, pulling me up behind them.

I’ve only run one race before, a local 5K sponsored by the city’s running club when John and I were newlyweds, before we had children. As a racing novice, I had no idea what to expect at the Bridge Run. After all I am used to running alone along the side of the road, the brim of my hat pulled down around my eyes, my headphones stuffed in my ears.

On Saturday morning I was jittery running up that bridge. The race start stirred in me emotions I never expected. I had a hard time controlling the rush of adrenalin, setting my heart and hands right. But I did and I made it to the top of the bridge, still running, joining the racers who reached the apex with me in a hearty hip-hip-hooray. We were strangers, all of us, but for those few moments we discovered ourselves bound together by the camaraderie of accomplishment.

My brother ran the race in 45 minutes, placing him well within the first 1,000 runners to finish. My sister-in-law, who had a baby only three months ago, finished the race a little while after me. She hasn’t trained much at all, more or less running on guts alone. That’s a noteworthy accomplishment, I’d say. Patrick and Camille are fun companions, but the best part of tagging along with them is that they’ve both run for years and competed previously in many running events, so I learned a lot Saturday morning just by following their examples.

After the bridge, on my way to the finish line, I spotted John, who was standing along King Street, to my right close enough that I could have touched him, ringing a cowbell and yelling my name. That was really nice, but it was nicer still to know John had parked his car downtown somewhere and knew a way back to the Isle of Palms that didn’t involve driving over the bridge, which would be closed both ways for at least a few more hours.

I ran the race in 56 minutes and a few odd seconds, finishing 4,297th. I’m happy with those results, but I know what I need to do next year to have a better run, a better time. As it is now I only get to run two days, maybe three days, a week. I’ll have more time to train next spring as the twins will be at preschool more often during the week, and I’ll know how to better prepare for that climb, which turned out to be so much steeper than I anticipated. I think I’m looking forward to it already.

Posted by: anne
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Categories:
Morning with the Moores
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It is almost five years now since that day during the summer when we watched our baby… Archie, although he wasn’t really our Archie then, just an Archie we looked forward to meeting, to loving… move around the television screen, an image transmitted from the ultrasound machine in the doctor’s office. The technician was examining the baby, measuring him, chatting away. And then she grew quiet, and I realized, too, that John was moving closer to me, reaching for my hand, and it felt as if my insides were beginning to shake.

It is almost five years now since we first heard the words “heart defect,” and then listened as the doctor explained, “This particular defect is very common in babies with Down syndrome. I recommend an amniocentesis to confirm the diagnosis.”

Then he added, “I’m sorry.” And we were, too, John and I.

It seems so odd now, looking back. To be honest, that was a bad time for us, but now the memory of it all feels wistful, bittersweet. That was when we took our first steps into this new life that now feels so familiar, so right. We were frightened, to be sure, but time and distance have softened the jagged edges of that doctor’s words and added a knowingness to my memories. I wish I could go back now to that time, an invisible me from today, and stand beside the woman I was then, whispering in her ear, “Don’t be sorry. You’ll see. It’s going to be so, so good.”

My copy of Jennifer Graf Groneberg’s Road Map to Holland arrived in the mail late yesterday afternoon. I’ve stolen moments here and there to read Jennifer’s words, and I’ve managed to finish the first chapter and begin the second. I’ve cried all sorts of tears while reading, but mostly ones filled with the memories and recognition her words stir inside me.

Yes, you’re right! I’ll think while reading. I remember thinking that same word, feeling that same way. My familiarity with her story makes me think she’s telling each of our stories, unique as they are, all of them rolled together, then tied-up with our common threads.

I can’t wait to finish Jennifer’s book. I think you should read it, too. It doesn’t matter if you have a child with special needs, or not. We mothers are all the same after all.

Posted by: anne
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Categories:
Archie
Morning with the Moores

While Archie, Kit and Jack napped this afternoon, I picked up downstairs, vacuumed the rugs and mopped the floor. I do these things often when the kids nap. The chores have a way of settling my mind, organizing my thoughts. They refresh me as well as the house, and those two things benefit my whole family, for sure.

I’d finished mopping the kitchen, the family room and playroom when I heard someone awake upstairs. It was Jack, I decided, because the footsteps thump, thumped heavy overhead, but fell lighter and quicker than Archie’s distinctive thump-pause, thump-pause gait. Over time I’ve learned that it’s best to give Jack space when he wakes. He’s grumpy in the morning, after naps, so I stand aside, giving him the space he needs to work through it all, and he comes to me when he’s ready. “Just like his mom,” John’s observed. And he’s right.

I pushed the soapy mop across the bathroom floor, into the hallway, and listened as Jack padded down the hall above to Kit’s room. “Kit!” he called. “Wake up!” A few moments later I heard their voices, Kit and Jack’s, floating down the hallway, down the steps, phrases falling in waves as those twins twittered away the way they do in their tiny talk, words tied together in call-and-response tones.

I passed into the foyer then, working my way to the study in the front of the house. Now I could see the upstairs hallway, and I watched as Jack, then Kit, ran toward Archie’s room. “Wake up, Archie!” Kit commanded.

Now I’d finished moping the study, and I was moving again into the foyer. All three of my children were standing at the top of the steps and they smiled at me as I passed beneath them.

I’d dressed Archie, Kit and Jack in pajamas before tucking them into their beds. Kit and Jack had spent the morning outside in our backyard so their clothes were covered in orange, upcountry dirt and melted chocolate, remnants of a snack-sized helping of baking chips I’d found in our pantry, forgotten in a half-full package leftover from a recipe I don’t now recall. Whatever Archie ate for lunch at school had left stains on his pants, so I’d taken them off, too, swapping them out for pajamas that matched Kit and Jack’s.

All three children were standing now at the top of the stairs, smiling down at me and I back up at them. For a moment I thought how much Archie, Kit and Jack, grouped together in pajamas at the top of the stairs, looked like a snapshot I found in a dusty photo album of John and his siblings on a Christmas morning when they were small, peering around each other and waiting upstairs for their parents to tell them to come downstairs, to come see what Santa had brought for them.

“I’m cleaning the floor,” I explained, looking upward at their happy faces. “I’m almost finished, just one more room to go.”

“Downstairs, Momma,” Kit stated, furrowing her brow and pointing down the steps toward me.

“In a minute, Kit,” I responded, working fast to finish the dining room floor, wring out the mop, dump the water, put everything away.

But I wasn’t working fast enough to satisfy my children. All three advanced toward me, shimmying down the steps. Kit and Jack reached the bottom first, leaving Archie behind to sit on the landing halfway down where the stairway branches out in two, one side falling into the foyer and the other descending down to the closet door by the kitchen.

The twins tried climbing the gate at the bottom of the stairs. When that didn’t work, they tried going under it. After that they tried shaking the gate loose from its fixings while bellowing at me, demanding me to, “Open! Open!”

I put the mop up, closed the door to the storage closet, then walked around the downstairs to inspect the floor, ensuring it was dry enough to be safe for tiny feet and unsure steps. That’s when I saw Archie trying to open the gate at the bottom of the stairway in the foyer. He smiled at me, grinning hugely ear-to-ear knowing I’d caught him in the act, and asked, “Open this one, Mom?”

The thing is that gate is often open. For whatever reason, John, Archie’s home therapists and I often forget to latch the gate behind us, but since its hung at an angle that assures it swings shut the gate looks locked even when it isn’t. Archie knows this, I’m sure. And he remembered. “Go ahead and open it, Archie,” I said, nodding encouragingly.

And he did. We listened together as Kit and Jack clamored up the other stairway, and laughed together as they slid down this one. Archie shut the gate behind the twins and followed them into the family room, running as best he could, trying to keep up.

Later this afternoon the kids played together again outside as I stood in the kitchen window, watching as I worked. They were still wearing their pajamas, and I’m sure the neighbors passing by wondered why. Archie was walking laps from one side of the yard to the other, carrying his Backyardigan radio out in front of himself, watching the lights on the toy flash as the cartoon voice sang, “Treasure, where’s-the-treasure…” And I thought, I know where it is. I’ve found it.

Posted by: anne
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Categories:
Archie
Jack
Kit

I try not to complain. I really do. Before Archie, before my eyes were opened to this whole world I never knew existed in regular time, I complained constantly, without end. But now I try very hard not to complain. It can be worse, I know. It can always be worse.

However, with that said, it still sometimes feels as if the universe is conspiring against me. And life lately seems like a good example of one of those sometimes. So indulge me, okay? Just this one time. I promise.

First of all, I am going to Charleston this weekend to compete in the 31st Annual Cooper River Bridge Run. John, Archie, Kit, Jack and I are staying with my brother, his wife and their children, as well as my parents, who are renting a beach house on Isle of Palms. I acknowledge that this is wonderful and unworthy of complaint.

What I am complaining about, though, is how damn bad one of the toes on my left foot hurts. You may think this is trivial, but I challenge you to run six-ish miles with a bruised toe and a nail threatening to fall off eminently and see how well you do.

I know that I can cope with the pain. In fact, I know my pain tolerance level well enough that I’m sure I won’t even feel my feet after the first mile or so, but I’m still not happy about this small hurdle. I’ve been kicking some running butt lately (ten miles each time I’m out!) and I’d like Saturday’s effort to reflect my progress.

Since we’re going out of town this weekend, it occurred to me yesterday afternoon that I needed a place to board our dog. It also occurred to me that our dog needs a new rabies vaccination before she can be kenneled because her current vaccination is out-of-date this week. “No problem,” I reasoned as I picked up the phone to schedule an appointment with our veterinarian on Wednesday morning, my only morning free enough from errands and appointments to allow me to take time out for the dog.

But as soon as I made another call to schedule a drop-off time at our kennel, I discovered that the kennel requires a 48-hour time period between vaccinations and drop-offs. “No problem,” I tell the woman at the kennel. “Let me call our vet again and reschedule the vaccination appointment for tomorrow.”

“I can rearrange our schedule,” I muttered to myself. “I’ll make it work out.”

So I called the veterinarian’s office again. At first, I was placed on hold for a very long time, and then once my call was picked up a very snippy office assistant informed I that Tuesdays are surgery days and she just can’t accommodate my request to reschedule. Now I’ve been taking our pets to this practice for years and the office assistant with whom I usually speak is very willing to work with me. But this new voice and her tone were both unfamiliar to me.

I explained to the office assistant that I needed the vet to vaccinate the dog tomorrow so she can be kenneled, and we can leave town on schedule, and asked the assistant to please, please find a way to make it happen. She put me on hold again until she came back several minutes later. “We can do her as a drop off, between surgeries,” she explained, her words short and tight. “But you need to bring her in before eight o’clock in the morning if you want us to do it.”

So tomorrow morning I’m challenged with finding a way to drop our dog off on one side of town, drive across town to drop Archie off at the Meyer Center, and then drive back across town to drop Kit and Jack off at St. Mary Magdalene’s which incidentally is about a mile away from the veterinarian’s office. And no, I can’t drop the twins off before Archie because his class begins earlier than theirs does.

Also? Tomorrow is picture day at the twins’ school so I need to have them looking presentable, which will take a little extra time at best.

My call to the veterinarian’s office was followed by a call to our satellite television provider. Our television keeps telling me that it “cannot connect to satellite,” and thus there is no reception on our set. This began last night and continued this morning. I only got to see half of The Tudors, and haven’t caught any news program in over a day.

The kids are missing Calliou, and the Backyardigans, and Maggie and the Ferocious Beast, and while these shows annoy me greatly, it annoys me more when the kids whine and cry because they’re missing their regularly scheduled programs.

And, people, I missed Martha today. I am never happy when I miss Martha. I admit it; I adore her. Have I ever mentioned that we are so engrossed by Martha here that Archie, Kit and Jack know her on sight? Well, they do. We are like little Martha robots in this house. It’s a frailty of mine, I know.

Just the same, I am on the phone with the satellite television company, and I am on hold, and then they are instructing me to try this or that, which I do without success, so I am on hold again. The dog is barking and the kids are screaming when the voice on the other end of the line comes on and tells me that we should schedule a service call, but that she doesn’t have a technician who can come to our house until Wednesday afternoon. But she doesn’t say Wednesday afternoon, instead she says the-second-of-April and I ask her to repeat herself because I’m having a hard time hearing her over the din, and then I say, “Hey, I don’t have a calendar in front of me so what day is the-second-of-April?”

The voice on the other end of the line says that the-second-of-April is Wednesday and I ask, “Did you say Wednesday?” and she confirms that she did.

So I ask incredulously, “That’s the earliest you can come?” and she confirms that it is, so I ask her to please check her schedule again, can’t she please come earlier than Wednesday, but she says that is the earliest available appointment. I sense there is nothing left to do but resign myself, so I sigh loudly and tell the voice on the other end of the line to book it.

I hear her computer keys click-clacking and then she tells me that it’s going to cost $79.95 for a technician to come out and fix my satellite television. “Really?” I ask her and I’m sure she can hear in my voice how annoyed I am with her now.

“Yes,” she answers.

“I have to wait two days for a technician to fix my television reception and then you’re going to charge me eighty bucks for him to do it?” I am cringing now, my eyes clamped shut and my nose crinkled as I remember the last satellite technician who came to our house and how much he stunk like stale cigarette smoke.

“Yes,” she answers again. I am quiet so she adds, “I’m sure it’s very frustrating…”

“Sure you are,” I interrupt and this time it’s me who has the tone. “But please put me on the schedule so I can wait two days for you to fix a service you provide to me at cost, and then I’ll pay you eighty bucks for you to do your job.” And then I hung up.

As soon as I hung up the phone it rang again. This time it was John. His car broke down on Friday. At first it wouldn’t start, but after one of his co-workers jumped it for him it wouldn’t stop, so he took it to the service center at the dealership and it’s been there ever since. “What do you want?” I asked him curtly.

“The Jeep is going to cost $1,300 to fix,” he answered flatly.

“Of course it is,” I retorted wondering why John is surprised anymore when our luck falls flat. “Just tell them to fix it.” And then I hung up again.

Our Jeep is about ten years old. It’s a good car. We like it a lot. We intend to run it into the ground and thought that day was at least a few more years in the future, but maybe it isn’t as far away as we’ve dreamed.

And now we’re $1,300 poorer than we were yesterday.

That’s a lot of money.

But to be honest, the car breaking down was hardly the straw that broke this camel’s back Friday morning. Right before John called from his office to tell me that a coworker had to follow him to the service department at the Jeep dealership I had a run in with the man who is planning to write a contract on the house for sale next door to us.

I was raised by a mother who sounds a lot like Sylvia’s stepmother. Consequently, I’ve learned to approach life very much like my own mother. I admit I’m prone to shouting at screens in movie theaters, cheering and hooting loudly when a situation calls for enthusiasm, and sharing my mind even when it isn’t particularly appropriate to do so.

So on Friday morning the man interested in the house next door was in the neighboring backyard, walking the property with a sales agent and builder representative. I was in our backyard with Archie, Kit and Jack. Ostensibly I was pulling Archie out of the garden, kicking a ball for Jack, helping Kit put her shoes back on, but really I was listening to this potential buyer talk about his plans for building a fence.

Now, I found out a few weeks ago that this man wants to build a six-foot tall wooden wall around the backyard of his property. “A privacy fence,” he calls it.

And even though I don’t agree with the farmer in that poem when he repeatedly insists that good fences make good neighbors, I would not be bothered by this, the potential buyer’s desire to build a privacy fence, if it weren’t for the fact that we already have a wrought-iron fence surrounding our property that ties into brick piers constructed in each corner of our backyard.

When we built our fence we did so with the approval of our neighborhood’s homeowner association and with the understanding that no neighbor could ever build a fence smack up against our fence, along the property line. Rather any future fences would have to be tied into our current fence, and would preferably be built of the same material as our fence.

So this potential buyer is talking about his plans to build a fence, and I know he can’t if he complies with the homeowner association covenants, and the community sales agent knows this, too, as does the builder representative, but they’re saying nothing to the potential buyer and are allowing him to dream his impossible dreams.

I am getting angrier and angrier as I’m thinking of how much our fence cost to build, and how we respectfully followed the rules with proposals to the homeowner association, and paid surveyors, and hired licensed masons, and how this man will devalue our property if he comes in and builds a wooden wall right up smack against our wrought-iron fence, side-by-side and fence-to-fence, running right along our property line, until I just can’t take it anymore and my chest feels white-hot, and my arms are pulsating all the way down to my fingertips, and suddenly I hear the emotion in my voice as it shakes and I yell, charging my fence, “You can’t do that!”

He responds that my fence isn’t on the line, my brick piers are. I yell some more, wondering how he’d have me build a wall like ours then where the fencing runs down the center of the end posts, should I have placed my piers outside my property instead, and we are going back and forth.

He thinks he has his rights, I tell him he’s wrong. I actually hear myself threaten to sue him. The sales agent warns, “Let’s not get ugly here!” and I turn to her and accuse her of not protecting the current neighborhood homeowners, of falsifying information to make a sale. Once that statement is out of my mouth I recognize it as slander, and I realize, too, that I’m a crazy lady at this point. What I’m saying is true, all of it, but I’ve lost my temper and I’m carrying on and no one hears me anymore because all they can do at this point is watch and think, “Wow, she’s angry…”

So I walk away from the fence, stuffing my hands in my pockets so I won’t wave them frantically in the air anymore. Somehow the kids just know to follow me inside, so they do without argument and watch television as I park myself in front of our kitchen window and chew my nails. All the while I’m watching the man, and the sales agent, and the builder representative shrug their shoulders as they kick the ground, then mill around a bit until they disappear inside, too. But still here, safe inside my own kitchen, my heart continues to pump wildly inside my chest.

I don’t know what happened with that potential buyer, and I don’t know what happened with the sale, but I tell you now that I hope I killed it. I hope to hell I did.

But why I care so much about what happens to this house in this neighborhood I don’t know. It doesn’t feel as if we fit in no matter how much I try (and I really do want to fit in), and I discovered last week when a neighbor hosted this month’s Bunko night, that after the Bunko night I hosted and she attended, she went home and copied the paint colors in my house down to the exact shade, all five colors, in exactly the same rooms. I don’t know how she managed to do it, but she did. And if you know me at all you know just how much this annoys me.

So that’s my rant for today. Thanks for reading, if you’ve made it this far. I am sighing now, not really feeling any better, but feeling just a little bit lighter. And certainly that counts for something, I suppose.

Posted by: anne
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Morning with the Moores

Two nights ago, by accident, John and I discovered that Jack would stay in his own bed all night long if we leave his bedroom door wide open. So we tried it again last night, leaving Jack’s door open to the hall, and our experiment rendered unfavorable results because we awoke this morning to find Jack sleeping at the foot of our bed.

We didn’t start out closing Archie, Kit and Jack’s bedroom doors at night, but it didn’t take long for us to learn that crying babies sometimes wake up their older brother who sleeps just a few steps down the hall. So we started closing doors at bedtime, slowly and deliberately, turning the knob just enough so it wouldn’t click-clank in the doorjamb, startling a tired child. And for us that worked well for a long time.

But now the twins have realized that they can climb down out of their beds at night and pick their way through the darkened hallway to our bedroom. For a while both Kit and Jack would wake me once they reached our bed, asking my permission to climb in and lay beside me. I never gave it, but instead always made them both return to their own beds. Just the same, I awoke most mornings to find the twins snuggled in the middle of my bed, tucked in tight between John and me, stowaways asleep adrift a sea of blankets and pillows.

It seems, though, that it has recently occurred to Kit and Jack that it’s folly to wake me, seeking consent to clamor into bed, because for many mornings in a row John and I have found the twins lying between us without neither he nor I remembering any night wakings. I wonder if this is how the twins have come to compromise with me? Maybe they’ve decided that they won’t wake their mother if I allow them safe passage upon my bed.

And I suppose that if this compromise means I’ll be allotted my fair share of uninterrupted sleep, then I’ll sign on. But I would like it duly noted that I’m a reluctant participant.

Posted by: anne
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Categories:
Jack
Kit

I received an e-mail today from Robin, Michael Jurogue Johnson’s mother. As you may know, Michael is an accomplished, professional artist who has Down syndrome. I found Michael’s web site when I was still pregnant with Archie, when his diagnosis was still new to me, when I was still vulnerable and vexed by it all.

I remember sitting at my desk and looking at Michael’s paintings. His work, as well as his personal story, gave me hope. I remember calling John at work, telling him about Michael, making him click on the link to Michael’s web site right then that I’d just forwarded to John’s business e-mail address. Together, over the phone line, John and I studied Michael’s work, marveled at his ability, and found renewed faith in our baby’s future in Michael’s current success.

When Archie was a baby in the NICU and the PCICU, John and I corresponded with both Robin and Michael. They both kept up with Archie, with us, by visiting Archie’s web site, and my mother began e-mailing Robin, too. That year we celebrated the holidays in Charleston, and on Christmas morning in a hotel suite on Market Street John and I opened one of Michael’s oil paintings, a gift to us from my parents to mark Archie’s first Christmas as well as their hope for his many Christmases to come.

Today that painting hangs in Archie’s bedroom, near his door. Today there are magnets on our refrigerator, illustrated by Michael. Today I write nearly all my personal notes to friends and family on cards printed with a portrait of Archie, or a portrait of Archie and the twins, that Michael and his mother produced together. Today I know exactly who to approach when I need artwork for our local Down syndrome support group’s latest Buddy Walk fundraiser, or upcoming event placard.

And today I received that e-mail from Robin in which she told me about Michael’s latest projects, about the newest updates to Michael’s web site. She also forwarded me a link to a video clip a man named Joe Kotlinski made for “You Tube” about Michael. I told Robin I’d post that link here and ask everyone who reads this blog to watch the video, to visit Michael’s site and consider purchasing a packet of note cards, or a magnet for your fridge.

After all writing this post is the least I can do for Robin and Michael, for this mother and son, who helped me redefine my expectations of my own son, rework my ideas of parenthood, before my firstborn, my miracle-born, boy ever got here.

Posted by: anne
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Categories:
Archie
General

I just picked up a room full of toys, strewn all over our house’s first floor, for the third time today. Earlier today I joked to my mom on the phone that the kids were like tiny Tasmanian Devils, a triumvirate of cartoon characters from my childhood, twirling together throughout the house leaving destruction in their wake.

Today was the first day of spring break. We tried playing together outside for a little while, Archie, Kit, Jack and I, but it was cold and we gave up before we even got started. Once we were back inside again we read together, colored together, played cars, and trucks, and dolls together, sang together and even watched television together. But eventually even my best efforts at entertainment fell short and the kids drifted off, one to this room, another someplace else, and I was left with piles of dirty clothes, a messy sink, dirty floors. I cleaned up and they messed up some more.

Even on days like today, days that are supposed to be different, our routine is entirely predictable. Even now, as I sit here at my desk, the children upstairs in bed, John seated in the chair by the fireplace hunched over work leftover from his day, even all this is unsurprising.

I imagine a neighbor may watch me through our uncovered windows during the day and say, “She is folding laundry again, pouring chocolate milk again, picking up toys again, sitting at her computer again.”

“She is typing,” they’d say. “Always typing. What does she have to say?”

So much, I’d answer if they asked me. So much.

You can see into our comings and goings here, that’s for sure. You can guess at what it’s like here inside these walls. You may be right, but you’d probably be wrong. It is so much better here than you can tell. We are so much happier than you’d ever suspect. It is all so normal to us, so ordinary and even-paced. It is all so good.

You may be able to predict what comes next, but you can’t know how my heart feels so huge inside in my chest as I sneak inside my children’s rooms each night before going to bed myself, as I bury my face in that place in their necks between their heads and their shoulders, under their ears, and breathe deep. Inhale. Exhale. Inhale again.

In one room I breathe and think, “Princess mine. Tiny, tender, but tough, even at two. World, she will undress you. Be ready.”

In another room I breathe and think, “They say you are like your father, but I know the truth. You see like me, feel like me, think like me. I see it in your eyes, smart boy, silly boy, sweet boy. Stick with me and I’ll show you how to make it work for you.”

And in another room I breathe and think, “My son. My perfect, perfect son. You are my alpha and my omega. Thank you. Thank God. Thank the both of you.”

Posted by: anne
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Categories:
Archie
Jack
Kit
Morning with the Moores

“No way!”

That’s Kit’s response to nearly everything these days.

Kit, it’s time to get dressed, Kit, it’s time to eat, Kit, it’s time to go to school, Kit, it’s time to clean up…

No way, no way, no way, no way!

And when Kit says it, she does it with such an air of haughty dismissal that I stare at her, my mouth nearly always agape, wondering where she came from after all.

But of course I know from where she came, or rather from whom she came. She is I, and I am she, and we are one, she and I.

But Kit is prettier than I ever was, and she has a sweetness to her that I don’t, that I never did. And it’s that prettiness and sweetness that keep me from exploding with anger, or frustration, or maybe even a combination of both every time she cocks her head to the side, lifts her chin ever so slightly and then says… no, sings, “No way, Mommy.”

“Excuse me?” I’ll ask her then. “What did you say?”

And she’ll look at me when I ask her that question, always fixing her eyes on my own. And she’ll answer, always matter-of-factly, her words ringing with a confidence I hope the world never takes away from her, “No way.”

Sometimes I’ll tell her she has no choice, that things are as they are and that it’s time to get up, or time to get out of the bath, or time to try the potty again. And sometimes I’ll just ignore her, act as if I never heard a word she said, and guide her to do whatever activity it is I want her to do anyway. And sometimes, too, I’ll launch into a lecture about language, and politeness, and using “ma’am” and “sir,” and about doing what you’re asked when an adult who always, always, always has your best interest in mind is asking.

My favorite times are when I do lecture Kit and she listens, apparently, and then offers, in a voice that speaks slowly but rings as clear as a bell, “Okay, Mommy.”

But even though that’s my favorite time, I still know what Kit’s response to me will be a few hours down the line when I tell her it’s time to turn of the television, go in the car, take a nap. “No way, Mommy. No way.”

Posted by: anne
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Kit
Morning with the Moores

So here we are, John, Archie and I. Click here to view our spot on Your Carolina with Jack and Kimberly.

Posted by: anne
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Archie
Morning with the Moores

Last Thursday John, Archie and I were interviewed for a television segment featuring the Meyer Center for Special Children that is scheduled to air tomorrow, Tuesday, March 18, on Your Carolina with Jack and Kimberly.

We were told that the segment will air at 10 o’clock in the morning on Charter Cable Channel 7, Direct TV Channel 7, On-Air Channel 7 and Dish Network Channel 7 in the WSPA South Carolina market. If you live in our area, please tune in, or record the segment.

We were also told that a portion of the video from our interview will be available on the show’s web site. When it is I’ll be sure to point to the link here on the blog, but only if you promise not to laugh out loud at me if I say something silly, or if my hair looks awful, or if my voice sounds dorky, or anything like that. Okay? Okay.

Posted by: anne
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Categories:
Archie
Morning with the Moores

Like most little boys, Jack has an affinity for airplanes and helicopters. He’ll point them out while he’s riding in the car, walking through a parking lot, watching television or looking in a book. “Wook!” he’ll yell, delighted by his discovery. “A pwane! A yewocopter!”

For Christmas my parents bought an airport for Jack, a small wooden hanger with the sort of accessories you’d expect, including a small wooden airplane and helicopter. At some point Jack began calling the helicopter “Base,” as if that were the toy’s nickname. In time, the airplane became a base, too, and then all helicopters and airplanes turned into bases as well, although Jack is still able to use the proper nouns to describe both vehicles when prompted to do so.

When Archie’s home therapists Heather and Amy came to visit last week, Jack took an airplane whistle from Amy’s bag of therapy toys and gadgets. Amy graciously allowed Jack to play with the toy throughout Archie’s session, so for about an hour Jack ran through the house, up and down the steps, and around the backyard with that airplane, all the while making buzzing and swishing noises.

Jack was inside our backyard playhouse with Kit as Amy and Heather were getting ready to leave. When Amy, who was holding Archie, passed him to me in preparation to go inside the house and collect her things, Jack leaned out of the playhouse window and extended his arm, waving the airplane whistle in the air. “Amy!” he called. “Here’s your Base!”

Amy, Heather and I all sighed loudly and in unison, “Ahh!” And when we were finished uttering our drawn-out exclamation of Jack’s conscious thoughtfulness, I added, “Jack, that was so nice of you to remember to give Amy her toy! Thank you!”

Jack’s arm was still extended through the playhouse window, and he was waving the airplane in the air, twisting his wrist back and forth, back and forth. Amy walked across the yard, to the open window, and took the toy, thanking Jack herself.

Since Jack is two-and-a-half years old, he usually throws a fit when Amy and Heather leave, taking their toys with them. I was amazed he relinquished the airplane so effortlessly last week, and even more surprised that he initiated the exchange himself.

These three children of mine grow a little more each day. I’m always surprised how they’re leaving behind babyhood as they tumble headfirst into the wonderful and wide-open world of childhood. My children, little people really, learning to make their way in this world, all three of them.

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Jack

I received a gift in the mail yesterday; a heart-shaped pendant with three, smaller floating hearts tucked inside for safekeeping. An opal for Archie, my October baby, is attached to one of the tiny floating hearts, and peridots for my August babies, Kit and Jack, are attached to the other two.

The gift is from my grandmother, my mother’s mother, who is in her eighties now. The necklace came in a small box tucked inside a manila-colored mailing envelope. With it my grandmother included a note, just a few short sentences scrawled on a piece of tablet paper by a shaky, arthritic hand. Her note to me reads:

Dear Anne,

Portia (my mother) tells Peggy (my aunt with whom my grandmother lives) all the good things you do. She is proud of you, too.

I love you
Gram.

Before I picked up our mail yesterday, before I read my grandmother’s note, I was feeling as if what I do here at home, with my children, every day doesn’t matter much. Intellectually I’m sure that my decision to be a stay-at-home mother has benefited my babies in ways too innumerable to count, but emotionally, especially on days like yesterday, I admit to feeling awkward, unfit, and sometimes even utterly incapable inside the role of mother.

I talked to my grandmother briefly after dinner yesterday evening. I thanked her, told her I loved her, explained to her how her unexpected act of kindness had made me feel appreciated. She answered, “You’re always doing nice things for me and I wanted to do something for you, too.”

My grandmother is referring to the cards I send her on holidays when I remember to add them to my cart at the grocery store, to the flowers I send her on Christmas and her birthday, Valentine’s Day, too. I don’t do these things for Gram because I want her thanks or anything in return. I just do these things for her because she’s my grandmother, because I should.

As I sit here, writing this, I wonder if Gram felt the same as I sometimes do when she was caring for my mother and aunts, four girls all together, when they were small? Surely she did as it seems we mothers all do. And maybe it’s because my grandmother felt that way, too, that she sent this necklace to me. She understands, I imagine. She knows. And so she just feels she should.

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Morning with the Moores

Tonight in the bathtub Archie started singing this song. He was just belting it out, so proud of himself for having thought of it, and pleased with himself knowing how amused I’d be with his song choice.

It took me a few bars to figure out what song Archie was singing, but as soon as he worked his way through the aha-aha-aha-aha-aha part and arrived at the juicy payload I was hooked. I joined him, singing through the ding-ding-ding’s, and Jack, all wet-haired and fresh from the bath, already dressed in his pajamas, came dancing into the bathroom, stamping his feet against the tile floor in time with our song.

Archie was lying tummy-down in the tub with soapsuds all over his face. He set his mouth right above the water, his chin cutting into the surface, tension be damned. And he was pleased, so, so pleased, having pulled his song choice from thin air like a boy magician, a remnant of a memory of a weekday afternoon he and I spent together in the car on our way from one place to another.

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Archie
Jack

Last Thursday morning Archie had his adenoids removed and new tubes placed in his ears. Later that night John and I stopped in Archie’s doorway on our way to bed and stood a while, watching him sleep.

We do this sometimes, John and I, stand sentinel together in silence, sharing a few seconds with our sleeping children. Their slumbering sweetness sustains us, I suspect, because from them we steal the bliss of their stillness.

Our visit to Archie’s room last Thursday night was different than it’d been in the past. Archie wasn’t snoring, air wasn’t rattling through his seemingly snot-filled nose or down the back of his throat, and as far as I could tell his breathing never paused in that alarmingly aepnic way I’d noticed it doing all those many, many times. Rather Archie simply slept the way a four-year-old is intended to sleep, silent, still and carefree, comfortably enveloped in the hush of his darkened room.

On the Tuesday before Archie’s adenoidectomy, the hospital’s business office called to complete our pre-operative paperwork over the phone. Our hospital garners a patient’s medical history first, inquiring specifically about previous surgeries, existing health issues, prior hospitalizations, and asks about incidentals secondarily. The questions are direct, obviously formulated to seek pertinent information, their phrasing leaving nothing up to interpretation.

Thanks to Archie’s many surgeries and procedures, I’m able to anticipate the hospital representative’s questions, my forward thinking enabling me to compose an answer to the next question in my mind before my answer to the current question has completely escaped my mouth. But even with all my practice and planning, I somehow always forget to tell the hospital representative that Archie has Down syndrome until she asks her final question.

“Does your child have any learning disability or developmental delay that may effect the way he’s able to follow instructions?” the woman on the other end of the line wanted to know last Tuesday.

“Oh! Yes!” I’m sure I sounded surprised, maybe even as if I’d been caught off guard. Archie’s diagnosis is so much a part of him and apart from him that naming it aloud sounds like stating the obvious, but also feels somehow unnecessary and needless. “My son has Down syndrome.”

The woman paused a beat or two so I forged ahead; answering the question she wasn’t sure how to ask. “He’s able and willing to follow instructions.”

“So he can do whatever the doctors or nurses ask him to do?” she wanted to know.

“Yes,” I confirmed.

As I review the conversation now inside my head, I’m surprised the woman’s question didn’t irk me when she asked it. I’m sure I decided then that she wanted me to be specific, that she was looking for a yes or no answer, just trying to do her job within the perimeters she was asked to do it.

But then she offered this, “They’re always happy, aren’t they?”

Her words knocked into me and pushed me a little off balance. “Not any more than what’s typical,” I replied, stumbling a little as I stepped word to word through my sentence.

“Really?” she wanted to know.

“He is both equally happy and unhappy. He experiences the typical spectrum of emotions and can throw a tantrum just like his brother or sister,” I explained and this woman on the other end of the line had the good sense to let the discussion end there.

After I hung up the phone, I continued to think of the woman’s question, her words ringing in my ears, making them red. I have always hated this assumption, it’s implications and it’s absurdity.

Always happy. No, of course not. To have happiness you have to have unhappiness; one does not exist without the other. In making such an assumption you are implying that my child isn’t whole, is only half, and a half who lives an unexamined life at that.

I tell you, though, that I believe I know how people arrive at this assumption. When people see a person with Down syndrome, they see someone who, for the most part, lives in the moment, someone who eludes the stagy fixings of time. Archie lives as if he understands something I once read a long time ago in a Jeanette Winterson novel, “Every moment you steal from the present is a moment you’ve lost forever.”

In that same novel Winterson writes about being happy, and what that means, and who knows happiness and who does not. She writes that to be truly happy you have to surrender yourself to it, you have to have the courage to walk around in all that happiness and let it lick your legs a little.

So maybe that is what these people see, people like the hospital representative on the other end of the phone line, when they look at Archie and others like him. Maybe they see a person who is brave enough to believe, no matter what. Someone who is brave enough to expect the best of others and find it in himself. That’s what it’s like to have happiness, I think. That is what Archie has taught me, at least, and that is how I’ve been learning to live these past four years.

When I was in college, when I read Winterson’s book for the first time, I underlined the following passage. I thought then that I knew what her words meant, and maybe in a way I did. But her words have a new meaning to me now, now that I know Archie, now that I know what it really means to be happy:

“I was happy but happy is an adult word. You don’t have to ask a child about happy, you see it. They are or they are not. Adults talk about being happy because largely they are not. Talking about it is the same as trying to catch the wind. Much easier to let it blow all over you. This is where I disagree with the philosophers. They talk about passionate things but there is no passion in them. Never talk happiness with a philosopher.

“But I’m not a child any more and often the Kingdom of Heaven eludes me too. Now, words and ideas will always slip themselves between me and the feeling. Even our birthright feeling, which is to be happy.

“This morning I smell the oats and I see a little boy watching his reflection in a copper pot he’s polished. His father comes in and laughs and offers him his shaving mirror instead. But in the shaving mirror the boy can only see one face. In the pot he can see all the distortions of his face. He sees many possible faces and so he sees what he might become.”

The “they” that hospital representative spoke about? They recognize their birthright feeling and everyone recognizes that in them. Makes me wish I was among the “they.”

Sometimes, though, I think I am.

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Archie
Morning with the Moores

If you’re keeping score you’ll see that today I finished re-posting all the blog entries Rebecca and Tom were able to help me locate. I’m still missing posts I wrote in July and June. I’m still looking for them and suspect they may be here somewhere, stored in a document folder on my computer. But finding them is proving more difficult than you may expect. Because these entries aren’t listed on Technorati, I have only my memory to rely upon when locating the copy. This work of mine would be much easier to find, I’m sure, if I knew each entry’s title or lead sentence.

I tell you, that hacker’s random act of meanness has sure caused me a lot of grief this past month. And especially today as I felt compelled to finish rebuilding my blog right now, no matter what. See, I have this submission I’m working on for an upcoming anthology and I decided this morning, before I even got out of bed, that I had, had, had to get the blog back in working order before I could finish the piece in question. The whole thing felt so if-and-then to me that I knew I had to finish working on the blog today even if it meant generally ignoring the twins when we normally play together in the morning while Archie’s at school.

And, yes, I do feel guilty about that now as I sit here, typing, while Kit and Jack are in their beds, sleeping.

Just the same, I have to tell you that there are a few things that really irk me about my rebuilt blog. First of all, I’m fairly sure the dates of each entry are correct because I took them from Technorati and Google, but then again I wonder… For instance, according to Technorati, I once wrote three sizeable blog entries on the same day. That’s not like me. So I did what I could while re-posting the dates, and I hope what I did was an accurate depiction of my true, original work.

Then about halfway through my work I began to get really angry with our site’s old host. Have I mentioned that John opened a problem ticket with this hosting company the day my blog was breached to report the issue, and then both he and I opened several subsequent problem tickets, as well as made several follow-up phone calls to the company’s help desk, and no one, NO ONE has since updated these problem tickets nor called us back with an explanation or solution? That’s a shameful way to do business, don’t you think?

After I acknowledged my anger, I started to feel awfully forlorn about it all. I mean, really, who cares if my blog exists in its entirety, or not? Is what I write here really of interest to more than a handful of people?

But I thought about those questions as I copied and pasted, copied and pasted, and I realized that, yes, there are many people who visit my blog regularly who never comment on my posts, but who do e-mail me, or talk to me face to face. I know some of these people personally, but I’ve also never met many of these people and still they care, still they come here to read.

And then I thought about that morning in the geneticist’s office when my parents, John and I met with the doctors to discuss the news of Archie’s prenatal diagnosis and I asked them, almost pleaded with them, “Who can we talk to? Is there someone out there we can talk to about all of this? Who will help us?”

Those doctors suggested we talk to parents of children and adults with Down syndrome. And we did. And I was so glad we did because in many cases we still talk to those parents today. They’re our friends now, and their children play with our Archie.

But there was a time when I wasn’t ready to talk to other parents of children with Down syndrome yet. I wanted to talk to them, but I didn’t know the correct language to use, and I didn’t know how to approach some topics, and I wanted to know all the intimate details of their lives, but how do you begin a conversation with a stranger and demand, “Please, please, please tell me all the intimate details of your life.”

So that’s why I spent my day rebuilding all I was able to post. Maybe someone out there who is at a crossroads and is wondering which way to turn will stumble upon my blog, or maybe someone out there who has already made her decision, or delivered her baby, will stumble upon this place of mine and find hope in what I’ve written here. Maybe someone out there who’s life hasn’t been touched by Down syndrome at all will find what I’ve written and be inspired to care, if only just a little.

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Archie
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Jack
Kit
Morning with the Moores

John wants everyone to see how scientifically superior he is to me.

But I bet he’ll still ask me to help him proofread/revise/write his work e-mails tonight when he’s logged on and working after the kids have gone to bed.

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General
Morning with the Moores

I’m only posting this so that you can enjoy a laugh at my expense. But yeah, I stink. Earth science is definitely not my thing. It’s good that I only needed one “math and science” credit to graduate from Kenyon College, and that Psych 101 fulfilled that credit requirement.

Ah, yes, Old Kenyon… Always a friend to English majors, thank goodness.