Enjoying the Small Things

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Three Years Apart, Two Hearts Together: A Report Card of Siblings with Special Needs

May 28, 2015 By Kelle

“Hold Dash,” she says, skipping to the couch where she climbs into her spot—the same spot she’s sat to hold him since his pink wrinkled feet were stained with ink from his birth certificate prints. She pulls a pillow under her left arm to prop his head up–as if he needs it–extends her arms and waits, beaming with such big sister pride, you’d expect a swaddled newborn to be handed to her followed by camera clicks and flashes. Instead, skinny toddler legs awkwardly dangle as I attempt to cradle and transfer Dash—all 37 inches of him–into the space on her lap without a kick to her face. He smiles and plays along; he knows the drill.

“Oh, look at the baby,” I coo, tucking a blanket under Dash’s chin while Nella pats his legs and snuggles him close. They both giggle, realizing this is a bit silly now, but no doubt enjoying the charade—him, for the attention; her, for the chance to be the biggest, the nurturer, the one he looks up to.

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Later in the day, they swim together. Nella wears a life jacket and sits on the first pool step where the sisterhood of Barbies is currently gathered, their naked bodies floating in a circle. She talks to her dolls excitedly, words pouring out so quickly, they overlap into jumbled phrases that are broken by laughter and occasional talking tos—“No Barbie! You bein’ mean!”—because sometimes those girls get out of hand. Dash joins her for a moment, but the promise of underwater adventures granted by his new swimming skills is too good. He’s off, away from the edge, free from a life jacket, kicking, paddling, pushing distance and depth and breath limits. He jumps and waits for us to clap, again and again and again. Nella smiles and claps too.

In a blur of two years, he’s caught up to a place we knew he’d get to, a place we talked about before he was even born. He’s mastered what she’s mastered, chasing the next thing—a surge of new vocabulary words, a size 10 shoe, the discovery of how to slip a key into a door, turn it left and unlock it with a click!—with a speed we’ll never get used to. Her baby–the one who once sucked the finger she crammed into his mouth when he fussed; the one she patted to sleep, pushing our hands away when we tried to assist–is no longer a baby but nearly her twin, a bond strengthened by the sharing of everything–height, clothes, cups, car seats, secrets, conspiracy theories. One never requests a Popsicle or a cheese stick or a pretzel bag without asking for one to share. “For Nella,” Dash asks. “For Dash,” Nella says.

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While their bond will never break, their window of campatibility is slowly closing, and I feel it for her. She wants to be bigger, the helper, the teacher and he’s often helping her now. The flip side is, of course, that he pushes her along, becoming another valuable resource in her life. Here, let me show you how to climb this bookshelf. Hey Nella, follow me. I Shawshank’d a secret tunnel into the locked pantry. She’s learning so much! Siblings are motivating forces–I have mine to thank for attempting many new things. And with the added power of one, two, three, four comrades behind her, Nella’s going to do just fine. Before I find our rainbow though, let me make note of the clouds. My clouds look like little bursts of sadness here and there, worries for her feelings and, undoubtedly, projections of my own misperceptions–daunting phrases like left behind that, when I really think about it, aren’t true at all, but still…they’re there. It will be hard to watch her struggle to do things that are easy for her brother and sister, and the sadness of that cloud can feel heavy sometimes.

But…

We are all moving forward, falling behind, on the heels of some before us and smoothing a path for those behind us always, at the same time. The importance is that we’re on the track together.

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Nella received her end-of-the-year preschool report card last week, a gentle informative assessment comprised of a group of indicators generalized by educators as age-appropriate preschool standards. Always excited to see her sister’s school progress, Lainey pulled the report card off the counter and tried to make sense of it. “Tell me what it says,” she asked, handing it to me.

I read first the note that was stapled to the top of the report card above the assessment, a smart teacher’s way of saying: Read this first. Nella does not equal her abilities. Nella equals the little girl I hug and teach and celebrate every day. 

The note focused on the joy that Nella brings to the classroom and on the incredible progress she’s made this year and ended with “I’m going to miss her so much next year.”

Lainey smiled. “What did she get?”

“Well,” I explained, pointing out the rubric, “there’s M, S and N. M means ‘most of the time,’ S means ‘some of the time‘ and N means–” My mind jumped to “none of the time,” but I stopped and looked back up at the key. N doesn’t mean “none.” Do you what N means? N might be the most valid measure of competence and progress, equally applicable to us all.

Needs more practice.

We are all so focused on mastering tasks. In fact, we’re beyond that. EXCEED, we think. Brett took one look at the honors list in the program at the last graduation we attended and laughed. “5.0? Seriously? Dude, when I was in high school, I would have thrown a party for a 3.8.” The truth is, the best lessons in life aren’t mastered or exceeded. They are locked in the “am learning” stage. And thank God, because otherwise I’d feel like a big fat failure.

I haven’t mastered mothering without meltdowns.
Or loving without judgment.
Or trying without flopping.
Or running without breaking to massage that pain in my side.
Or freely writing what I really feel.
Or valuing my self worth without comparison.
Or making all the right choices for a life best lived.
But I’m learning.

My life report card would consist of a stapled note noting my positivity, my big heart, my great use of color. And underneath it, a giant N. Needs more practice. 

And I’m happy with that assessment.

I approach Nella’s progress equipped with the same things I use to approach my own: Perspective and Action. We celebrate the magnificent opportunities that dwell in the assessment of “needs more practice.” And we show up for practice every day.

I finish reading Nella’s report card to Lainey, giving credit to the importance of each grade, celebrating the “most of the time“s and “some of the time“s and the familiar place of “needs more practice.” When I’m finished, Lainey takes the paper from my hand and scans it over.

“What’s this?” she asks, pointing to a letter chart with circles.

“Those are the letters she knows.”

She studies it carefully. “It says she doesn’t know R. Yes she does.”

“Exactly,” I smile. “It’s just a piece of paper, Lainey. Report cards don’t show who you really are.”

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The report card is still lying on the counter this morning when I wake up. Dash is first to join me and finds his way to a stack of cardboard blocks while I make my coffee. I hear a few crashes, some blocks being flung to closet doors, and in my head say another thanks to Brett for picking up the cardboard ones to temporarily replace his former wood weapons of choice. Nella soon wakes up to join him in his room and I leave the two of them alone to do their thing. The alarm of prolonged silence though soon calls me to check on them, and I peek around the edge of the door.

“Clean up,” Nella says, stacking blocks against the wall where they belong and directing Dash toward the last two left under the table. He runs to get them and passes them proudly to the boss, the big sister, the teacher, the helper, who finishes the clean-up job.

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Dash looks to Nella, clearly in charge, for the next command. She spots me from around the corner and another idea is sparked. “Take a bath,” she says, pulling an arm out of her sleeve in preparation.

“Take a bath,” Dash repeats, two steps behind his sister who’s already in full trot down the hallway.

They both drop an article of clothing near the living room rug, too excited to wait for the bathroom, and right before I ask them to pick it up, I notice the other treasures left in the living room–the lone ballet shoe, the sports bra, the towel, the tape measure and the open book next to the empty glass.

Our family just needs more practice.

As for the assessment of these two?

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They fight “some of the time.”
They listen “most of the time.”

But that space in her arms where she’s held him a hundred times? He’ll fit forever.

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Filed Under: Down Syndrome, Family, Parenting 152 Comments

An Art Party: 8 Years Old

May 18, 2015 By Kelle

I wish I could gather up all the things of Eight Years Old and store them in a bottle on my kitchen shelf, wedged between the other bottles and vials of things that keep me healthy and make me happy–the vitamins; the thieves oil; the jar of shells and pebbles from West Twin Lake, Summer of 2012; the delicious honey candle jar with just enough wax saved in the bottom for one more burn. I’d get a good bottle for these 8-year-old things, the best I could find–blue glass maybe or amber–and I’d add a pretty label–silver, with sparkles. The Magic of Eight-Year-Old Things, it would say.

In the bottle, I’d pour in the excitement of turning another year older, uncensored by the need to play it down. I’d tuck in the thrill of getting to school early just to make sure you hear your birthday announcement on the school’s morning news–because it’s quite nice to be celebrated for being born–and the next day announcement that there’s only 364 days left until the big Nine. There’d be tiny toys in there–trinkets that fit in your pocket, like Shopkins and puzzle erasers and bright-colored charms for chain bracelets. There’d be smiles in the bottle–all kinds of them from thin shy ones to wide grins full of spaces from missing teeth. I’d slip in notes and stapled books I find around the house–like “The Book of Girls” with page after page of drawings of girls in peace sign shirts and heart skirts that sit above long stick-thin legs, and labeled names like Alis and Menica and Emmee and Kira. I’d keep the misspellings–as many of them as I could find because they’re lovely and a very special part of 8-Year-Old Things. And sometimes 36-Year-Old Things.

I’d carefully add the innocence–in fact, I’d use a dropper to squeeze it in drop by drop so that none of it is wasted–the good intentions, the benefit of the doubt, the beautiful open space present before the knowledge of pain and suffering and evil in the world leaves shadows that cannot be erased. There’d be twirly skirts and Taylor Swift songs, hand claps and jump ropes, sidewalk chalk and pink pleather wallets stuffed with hotel key cards and a few loose dollars and a handful of change–we’re talking a lot of money. The pennies would be saved for fountain wishes, naturally. The bottle would preserve the love of Lunchables, Chuck E. Cheese, chapstick in flavors like Dr. Pepper and Junior Mints, gumballs in your ice cream, dropping quarters into bubble gum machines, princesses, shoes with heels that click, a sneaky swipe of Mom’s lipstick before school, worn off remnants of temporary tattoos. I’d add friend dates and still call them play dates. I’d drop in Good Luck Charlie but smile when I poured in Curious George right after.

A generous amount of feeling pretty would float in the bottle and mean nothing more than a cute headband or some sparkles on your shirt–not weight or face lines or thigh gaps. And there’d be love–infinite love–solidified not in answers to existential questions or attention from crushes but in dinner on the table and back rubs before bed and parents waving from the crowd at the second grade musical.

And I’d save the best for last. Right before I corked the bottle, I’d put the magic in, the stuff that makes the bottle glow–imagination without limits and shimmery drops of belief–in Santa and fairies and mermaids, love and opportunity and equality, and good stories with good endings.

I’d open the bottle every day, swirl the contents, take deep breaths in and never forget the importance of Eight-Year-Old Things for every year after.

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Eight years ago tonight, I held a little girl for the first time and could barely say the word daughter without my heart flipping. For all the grade school What Do You Want to Be When You Grow Up? questions I had always filled in with the same answer, knowing my aspirations were just as dreamy as my classmates’ answers of rock star and actor and astronaut, I did it. I became the dream…a mother.

This weekend we celebrated those 8-Year-Old Things with an art party at our local pottery studio, Earth & Fire, and a dozen sweet artists.

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We put the “art” in party.

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Cupcakes from the Hello, Cupcake book, one of my favorite creative baking inspirations. Lainey will randomly go through it, pick something out and say “Let’s make this one.”

Some peeks and pics from our day:

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Clear paint cans from Michaels or you can buy online here

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Lainey and I made the party hats by adding cut card stock paint palettes to Spritz hats from Target (10-pack)

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She’s looked at this book and all the messages her friends wrote so many times this weekend.

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Before the pizza came, the kids had fun decorating their own picture frame placemats and adding their art to pages from this awesome book.

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Eight seems a good age to let the girls do their own fun thing at a party without moms hovering with the next game. We walked down to the dock for ice cream after we ate, and the girls had silly fun making up their own games, talking and taking pictures. Watching them was another experience–how in the world did we get here?

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The world is your paper, little artist. Make your mark.

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Feeling ever so grateful tonight for another year, and for The Magic of Eight-Year-Old Things. Our world is better because of them.

Happy birthday, Lainey Love.

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Filed Under: Make Stuff, Parenting, Parties 58 Comments

Enjoying: Mother’s Day

May 12, 2015 By Kelle

I woke up in the middle of the night Sunday night worried about the weight of the world and all its people. This happens now and again–never used to, but I’m older, have three parts of my heart beating in other rooms, and understand more now how intricate life is–how many people and things contribute to good and how quickly that can all change.  Under the weight of darkness and without daytime distractors to soften the blow, I think about wars, people who are hurting. I worry about my family’s health. I think about the e-mails I forgot to respond to, jobs I need to finish, the appointment I need to make for new tires. I wonder if I call my parents enough, if I read to my kids enough, if ten years from now I’ll wish we could have done it all differently, if that pain on my right side is nothing or something serious and awful. I put my hand over my heart and feel it beating and am overwhelmed by the fact that my next breath and every one after is completely dependent on that small heart never stopping.

When I’m lying awake in my bed at 2:00 a.m., my love for my kids is all consuming, almost paralyzing. On these nights when the world is heavy, I make lots of middle-of-the-night promises to myself–to live healthier, to run and read and pick up the phone and hug and talk and try and give more. Eventually I fall back to sleep, wake up hours later and laugh because everything is fine and, good Lord, can I take things to the moon. I make coffee, light a candle, wake up kids, decide whether I’m going to drink the green smoothie or care about it tomorrow and eat the toast with extra butter and piles of cherry jam today. I remind myself that perspective is everything, that the sun restores clarity, and I save just a pocketful of those midnight worries to challenge me (drink the green smoothie! drink the green smoothie!).

I’ve accepted that occasional middle-of-the-night anxiety is a thing for me and the more other moms I talk to, a thing for many other people too. I pay attention to it and have an arsenal of ways to keep it few and far between, most that center around good life choices and gratitude.

Paying attention is everything. A couple weeks ago, I stumbled across an old Fresh Air interview with Maurice Sendak that I had forgotten about. I had originally heard it replayed on the radio last year and remember sitting in a parking lot outside a pet store, unable to turn my car off–it was that good. You may have heard it–it’s so lovely. If you haven’t, listen to the last five minutes of it. I reintroduced it to cousins and friends last week like it was my job to spread the gospel of gratitude and imagination. Actually, that is my job, and that is my gospel.

There’s this part where he describes what he sees outside his window, and with just a few words, you truly feel how grateful he is for beauty. For something as simple as trees. In the wise weary voice of a man who’s lived through years of joy and suffering, he says my favorite part: “There’s something I’m finding out as I’m aging–that I’m in love with the world…I can take time to see how beautiful (it is). It is a blessing to find the time to do the things, to read the books, to listen to the music.”

And that is my elixir. To state it in a simple mathematical equation, The Beautiful Things in the World > the worries.

Casting off into the world another love for small things with some images from our Mother’s Day–little people exploring the world like I want to–with a big splash.

 

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I made a Mother tattoo with permanent marker on my hand, and Lainey asked for the exact same one. “You sure you don’t want Daughter on yours?” “Nope…I want it just like yours.”

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Last night, Lainey and I went for a run together post storm. We jumped in puddles, looked for frogs, stopped to observe the way raindrops were suspended on our gardenias, and when I got tired from running, she yelled, “Let’s keep running!”

Sweet sunshine, sweet babies, sweet tomorrows. Let’s keep running. But maybe not stop for jumping jacks every half a block because that was a bit much.

I hope you all enjoyed some of those beautiful things of the world this weekend.

 

Thank you to all those that left encouraging words on Jillian Lauren’s interview post. Congratulations to Brittany, the winner of her book package, Brittany: “…I needed the honest thoughts from moms who have been through the fire and made it out the other side. I am constantly sitting between overwhelming excitement about adopting and the waves of terror for the possible attachment problems, fear that my children will never truly feel connected, or worse- that I will never be able to connect deeply with them. I stopped reading half way through to order the book and then came back to the interview- Thank you Thank you Thank you!“

Filed Under: Enjoying, Our Florida Home, Parenting 29 Comments

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