Enjoying the Small Things

Enjoying the Small Things

  • ABOUT
    • KELLE HAMPTON + ETST BLOG
    • Our Down Syndrome Journey
    • Down Syndrome: Our Family Today
    • PRESS
  • the book
  • The Blog
    • Make Stuff
    • Family
    • Favorites
    • Parenting
    • Parties
    • Style
    • Travel
  • Once Upon A Summer PDF
  • Printables
  • CONTACT

Saving the Balloons

October 3, 2014 By Kelle

Saving the Balloons

 photo balloon_zps4d30443b.jpg


October is Down Syndrome Awareness Month.

I sat down to write this post about Down syndrome four times in the past three days. And during those four times, Brett was watching one of our favorite shows and I chose to sit next to him on the couch, falling asleep five minutes in. And Lainey came crying to me with, “Mom, my mouth tastes like throw-up.” And Dash and Nella built a block tower together so high that Brett came running for me to take a picture. And I forgot about Lainey’s spelling test and had to fit a cram session in of all those tricky apostrophe words. I never got around to my post.

This is exactly what I wish I knew almost five years ago. That the third copy of the twenty-first chromosome that seemed to be a life game-changer would soon be swept up by the bigger things in life that define us. Tucked neatly in the back with playtime and school assignments and couch love in the lead.

My response to Down syndrome—however fortunate or unfortunate it is—has been much like my response to other hard truths in life: Let’s put some balloons on this. I realized just how much this is true recently when Heidi called to tell me that she broke her foot. “I have a foot boot,” she reported, “and I’m supposed to walk with a walker.”

“Dude,” I jumped in. “No big deal. We’ll decorate it. Clip on one of those obnoxious bike horns so you can scare people who walk in front of you. It will be hilarious. Oh and we can yarn bomb the legs. Get some balloons, tie them—” I stopped myself. “Oh my God.”

“What?” Heidi asked.

“I’m doing it again.”

“Doing what?”

“This is what I do, Heidi. I have to take every bad thing and turn it into a party. I don’t think that’s good. I mean, think about it, I do this with everything. I’m glitterfying. I mean, I’m joking but still. I’m silver linifying the shit out of something that sucks. Sorry about your foot, man. I meant to say that. What does this say about my ability to handle hard things?”

Heidi laughed. “Uh—that you have a coping mechanism that so lines up with your personality? Kelle, I swear to God, the day any of us calls you and you don’t do that is the day I worry. This is why you’re you. We need the balloons. Now tell me more, what color yarn should we use?”

I thought about this, specifically in relation to Nella’s Down syndrome. In the beginning, I needed balloons and lots of them. I needed a whole constellation of rainbow-colored balloons like the grouchy old man in Up so I could tie them to my house and sail high and higher, away from the world, up in the clouds where I could peacefully sort things out until I was ready to land. This pissed a lot of people off. Over time, I’ve untied the balloons, no longer needing them, letting them wander off to find someone else; and our house has landed on a sturdy foundation. Raising a child with special needs—although we aren’t defined by it—does take seriousness and proactive thinking and a mission to both equip our children with the tools they’ll need to face the world and prepare the world to accept our children. They’ll need a hell of a lot more than balloons—both our kids and the world.

But I still keep a little cluster of them—especially the yellow ones—because life is hard, and I’ll always need balloons. They’re less about Down syndrome and more about me. And on this blog and in my advocacy, you’ll see those balloons floating from time to time. When you see them, just know they’re there for me. They make me do my job as mom and advocate and person in this world a little better.

 photo balloon3_zps493dc647.jpg

Filed Under: Down Syndrome

It Is What You Make It

August 26, 2014 By Kelle

It Is What You Make It

Well here we are, in school with two kids. If buying a vacuum or signing a birth certificate or choosing a pediatrician didn’t make us feel like adults, then filling out two hundred forms the first week of school and packing side-by-side lunches does. It’s official: we’re not playing house. This parenting stuff is legit.

If the end of last year was Test Preschool Out year for Nella, then this year is the real deal. We’re in the preschool directory and “Nella Hampton” is typed on cute little labels on cubbies and job lists and birthday calendars.

She’s doing really well, and in one week we’ve had a good handful of reminders that the extra challenges she faces are real and present, but that the greater truth of watching your kids learn new things–regardless of their pace and position among learning curves and growth charts and standards–is about the most fulfilling thing your heart can withstand.

 photo print1_zps51931f86.jpg

The preschool environment is really good for Nella right now, providing an opportunity for her to thrive outside our home, make new friends and learn instructional routines that will soon be part of her everyday life. But the classroom setting also draws attention to her challenges–things we forget that she’d probably be able to do if she didn’t have Down syndrome. We are very good at focusing on Nella for who she is and following her own pace that sometimes we forget–“Oh yeah, most kids this age can have a complex conversation.” We watched an old video clip the other day from when Lainey was three, and I couldn’t believe how well she spoke and interacted with us. You really do forget over time, and while I might not be as bad as the old man in the elevator last week who thought he’d tap into his former dad-of-little-kid days and take a shot at guessing Dash’s age with a, “Lemme guess–8 months?”, I at least have forgotten enough not to make constant comparisons. I love that we see Nella for who she is and that we’re not pressured by what she would be doing without that chromosome, but I also like to keep my finger on the pulse of age-appropriate expectations so that I can prepare her as best as possible for the world that awaits her.

 photo print4_zps8776e191.jpg

 photo print7_zpsb05af039.jpg

Her classmates responded to an “All About Me” activity last week, answering questions about themselves like what their favorite color was, what they wanted to be when they grow up, their favorite toy, their favorite food, etc.. Her teacher, sensitive and eager to make subtle accommodations, texted me the list of questions the night before the activity, understanding Nella wouldn’t respond to these with verbal elaborations like her friends and hoping that maybe I could send in some answers so her poster would be as fact-filled as her classmates’. While she knows many words and can run to the pantry with a passionate “I want crackers!” to tell you what she wants to eat, she doesn’t elaborate much with open-ended questions and sometimes just smiles and says, “yeah.”

I pulled the list up on my phone and grabbed a torn piece of paper and a pen. We’d try again. “Nella, what’s your favorite toy to play with?” I knew I could make it easier by giving her choices or leading her to pick the one I knew was her favorite. In fact, I could save us all the trouble and jot down reasonable answers without her even being asked, but I wanted her to answer on her own.

“Toy,” she said.

I rephrased it. “What do you like to play with? Can you show me what you want to play with?”

“Play with,” she repeated.

I’d try a different one. “Oooohh–your favorite food. What’s Nella’s favorite thing to eat?”

“Favorite eat,” she mimicked with a smile.

It wasn’t going to happen this way, and Lainey knew it.

“Can I do it with her?” she asked, reaching out to take the pen. “I know what her favorite food is.”

Lainey kneeled down next to Nella, using the same syrupy mom voice she uses when she plays house or teacher or calms Dash down after a boo-boo.

“Nella, is spaghetti your favorite food? Do you love spaghetti?”

Nella smiled. “Yeah.”

In the space after “Favorite Food” on the paper, Lainey carefully wrote “spagity.”

“Is a baby doll your favorite toy?” she went on. “You love baby dolls, right?”

Nella smiled again. “Yeah.”

The questions and yeahs continued until the paper was filled, and Lainey handed it back to me, satisfied with her progress.

“Thank you so much for doing that with her,” I said, “You just helped her with her first homework assignment, you know.”

 photo print15_zpse534e5b8.jpg

I would love nothing more than to have a long conversation with Nella–to hear what she really thinks about spaghetti and baby dolls and her sister’s plan for her to grow up and be a singer and a daycare worker who rocks babies all day.  I dream of these language victories and how they would help us know our daughter even more.  But for now it is what it is.

“Oh, don’t say that in front of Dad,” my sister warned me up north this summer after I dropped the phrase in conversation, “He hates that saying.”

“He hates ‘It is what it is‘?” I laughed. “Why?”

My dad overhead and jumped in. “Because it’s overused to be a cop-out phrase. It is what it is if you accept that. But it is what you make it if you tell yourself it can be more.” Life Lesson Crammer, he is.

Down syndrome for us will always float somewhere between “It is what it is” and “It is what you make it.” Like any parent of any child, we love our child just the way she is…and we’d love for her to reach her full potential which takes some pushing for all of us.

After one week of school, I was pleasantly surprised (okay, I cried) to hear Nella sing her entire preschool prayer, word for word, at bedtime the other night. She’d been spongin’ up the week’s experiences, saving the big moment to show us: You sillies. Of course I can show you what I’m learning. Watch this.

Different strokes for different folks, different paces for different faces. We’re all learning.

 photo print11_zpsa707681d.jpg

I decided if my kids were back in the learning and new experience game, I didn’t want to be left out, so I signed up for an adult ballet class and showed up last week with a couple of friends who promised they too were “inexperienced beginners.” My friend Andrea lost all credibility because, while I was having my crooked plie gently corrected by the teacher, Miss “Ballet Beginner” was Pas de Bourree’ing across the floor all total profesh. But whatever. I’m definitely the most inexperienced (translated: hilarious-to-watch) dancer in the class and wouldn’t know a rond de jambe if it kicked me in the face, but I’m learning and it’s fun, and my body’s being stretched past what I thought it was capable of–sore muscles to prove it. I’m pushing myself and watching the moves of the other dancers in the class, knowing I’ll pick things up as I go.

Before floor exercises last week, our teacher suggested the less experienced dancers (cough cough, Kelle!) join a group of–well, let’s just cut to the chase here–people who don’t look like asses out there. Knowing clearly which group I belonged to, I scooched a little closer to the two dancers in front of me who obviously had some dance instruction under their belt.

“How long have you been dancing?” I asked one of them.
“Since I was two,” she answered.
“Whoa, you beat me,” I admitted. “I just pretend I’m a ballerina in my kitchen when I play classical music.”

The music started and I followed her lead as our group glided across the wood floor to the other side. I was happy I wasn’t dancing alone even if I couldn’t keep up. Different strokes for different folks, different paces for different faces…we’re all learning.

I made it through class and look forward to more practice, more stretching, more learning this week.

Oh, and my ballet friend? The one whose lead I followed? I noticed something a few minutes into class. She has Down syndrome too.

******

I’m so excited for what this year holds for Nella–it is what we make it.

I expect great things.

 photo print43_zpsc17875a6.jpg

Filed Under: Down Syndrome, Holiday, Parenting

Another First

August 19, 2014 By Kelle

Another First

The end of another first day. 

I read Lainey’s First Day of Kindergarten post the other night, wincing through all the hard parts and waiting for them to get better just like I watch movies I’ve seen countless times, thinking maybe the ending will be different this time. The post hasn’t changed in two years–she still sits on a bench at recess and cries; I still wait outside her classroom door for the bell to ring. Also, Castaway? When Tom Hanks comes back, he still finds his girlfriend shacked up with the dentist.

This year, thankfully, our first day was less dramatic, made easier by experience but doubled in complexity (and prep time!) by sending two off for first days–Lainey to second grade, Nella to preschool. Maybe it’s some sort of overcompensation for the fact that my heart gets a little twisted sending them off, but I was Y2K ready this year. Outfits ironed, bags packed, forms filled out, lunches packed, notes written, fridge stocked, house cleaned. A message to the world: Hey, world. I got this.

 photo print5_zpsb69758b3.jpg

We did our thing. Ready early, first day pictures in the driveway, music in the car, hands held in the parking lot and up the sidewalk. They both did great–a few tears, but being the seasoned dropper-offer I am, I knew they’d be fine.

 photo print8_zps75d8aa20.jpg

 photo print9_zps5bba3ebc.jpg

I wasn’t home ten minutes and mom friend texts flew in like air traffic control updates: who cried, who didn’t, pictures of well-dressed smiling kids holding “First Day of ______” signs. This is how it goes. I’m two years in now, but school years are like dog years, so I’ve been doing this for twenty-four years.

 photo print13_zpsaf10c438.jpg

With 24 years of experience, I can tell you this: no matter how much they’re smiling, no matter how much you love their teacher, no matter how much they convince you to just go, mom, I’m fine, turn around and don’t even think about asking me for a kiss in front of my friends, you’re still going to leave feeling like you left your own beating heart in a cooler in a classroom, asking someone else to make it thrive for seven hours. Every day. 

There’s no doubt our teachers are miracle workers.

As good as it hurts, as bad as it feels good–this is just the beginning. There are years of first days ahead–for them, for us.

 photo print2_zpsb2a95ba3.jpg

 photo print3_zpsc549597c.jpg

Both girls came home beaming today. I watched for the first smile the second I made eye contact with them, and it came soon enough, followed by “they did great” reports from their teachers. We’re in it now, the first day checked off, the rest of the year officially in progress. From here on out–through school, through life–it’s Groundhog Day. Letting go and picking up.

 photo print11_zpsba71f0d6.jpg

For every first, there’s something good that follows.

 photo print7_zps1cabc0f4.jpg

Happy days to all those facing firsts this month!

Filed Under: Down Syndrome, Holiday, Parenting

  • « Previous Page
  • 1
  • …
  • 9
  • 10
  • 11
  • 12
  • 13
  • …
  • 18
  • Next Page »
  • Facebook
  • Instagram
  • Pinterest
  • RSS
  • Twitter

Popular Posts

Shop My Favorites

Keep In Touch

Bucket Lists

ARCHIVES

Archives


“One of the most emotionally stirring books I’ve ever read….a reminder that a mother’s love for her child is a powerful, eternal, unshakable force.”
Ree Drummond, The Pioneer Woman
  • Home
  • About this Blog
  • BLOG
  • BLOOM
  • Favorites
  • Parties
  • PRESS
  • CONTACT

Copyright © 2021 ·Enjoying the Small Things & Kelle Hampton, All Rights Reserved.