Parenting Archives - Enjoying the Small Things

8 Things I’ve Learned from Having a Child with Down Syndrome

March 20, 2018 By Kelle

Tomorrow is World Down Syndrome Day, a day globally recognized (and officially observed by the United Nations) to raise awareness and celebrate individuals with Down syndrome and chosen on the 21st of the third month to represent three copies of the 21st chromosome. We cannot imagine life without Nella, and although we weren’t expecting that extra chromosome with her arrival eight years ago, we’ve learned so much about ourselves, the world around us and what really matters in life because of its presence in our family. In celebrating the lives of these incredible individuals on World Down Syndrome Day this year, here are 8 Things I’ve Learned from Having a Child With Down Syndrome.

#1: Life is hard. Just accept that.
So much of my devastation receiving Nella’s diagnosis was due to the fact that I got swept up in how comfortable and according-to-plan life was going that I expected it to stay on that path. We are not entitled to a life free of challenges, and clinging to a dream of ideal/easy/comfortable sets us up for incredible disappointment when the inevitable unexpected happens. In those first weeks after Nella was born, I read the words of Scott Peck and actually felt relieved—like I was given permission to stop fighting/grieving/analyzing what had happened and just accept that it was part of life. “Life is difficult,” he wrote. “Once we truly know that life is difficult—once we truly understand and accept it—then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.” When I dream of the future now, I try to focus less on specifics I can’t control and more on the greater picture: I expect a life of love and fullness, and when I encounter the hard unexpected things in life, I will overcome them and use what I’ve learned to be better.

#2: Down syndrome isn’t what makes life hard.
Now that #1 is out of the way, here’s a surprise: That big life-changing diagnosis we thought would make life hard? Turns out the harder things in life have had little or nothing to do with Down syndrome. As for the future, we cannot be sad or stressed about a chapter that hasn’t even been written yet. And when it comes time to write that chapter, we will be ready. The tenth chapter of a math book looks entirely overwhelming on the first day of school, but when you arrive at it when you’re supposed to—after you’ve completed chapters 1 through 9—it’s just another math lesson.

#3: Love the child you were given.
Having Nella has helped me understand this more deeply for all of my kids. Our children will surprise us numerous times in their lives, both in ways that make us feel happy and proud and in ways that hurt and are hard to grasp (don’t worry—we did the same to our parents). But the child you get is the child you get. They might not like the sports you like or the clothes you pick out. They might not learn to read as fast as you did or take an interest in ballet like you had hoped. They might vote differently than you someday or join causes you don’t support. But we are going to have to let go of all of that, because we only have one job…to love them. More than anything, our children need overwhelming, no-strings-attached love as the unshakable foundation on which they will build and rebuild their experiences.

#4: There’s more to communication than words.
“What if I can’t understand my child?” is an overwhelming fear when, as a parent, you want nothing more than to deeply know your child and meet her needs. While Nella can speak very well now, her vocabulary developed at a slower rate, and her communication is different than her peers. Through these past eight years, we’ve understood more how words are only a small part of communication. I have only felt the most intimate connection with Nella through her touch, her expressions, her behaviors, her humor, her tone and her heart. Her messages are intentional and meaningful, and we listen well when she communicates. And the best part? I’ve sharpened these communication skills and recognize and use them with people wherever I go now.

#5: Enough of the metrics!
At seven months, your baby should be combining syllables. Near 12 months, your baby will likely be practicing taking a few steps. Your toddler should be gripping a crayon now. Your kindergartener should know these sight words. Your third grader should pass this test. Your fifth grader should ace that test. Your high schooler should have this GPA. ENOUGH OF THE MARKERS AND METRICS FOR MEASURING A CHILD’S SUCCESS! Having Nella and celebrating the different ways and pace at which she learns has inspired us to let go of numbers, tests and comparisons for all of our kids and instead applaud interest, effort and expression. We put less weight on report cards and test data and focus more on communication with our teachers and evidence that shows our children are exploring the world, making art, pursuing interests, utilizing resources, fostering connections and contributing their unique gifts. Numbers can sometimes be a helpful tool to point out what our kids need, but will never be used to represent my children’s potential and value.

#6: Be a microphone for those whose voice needs more volume.
Having a daughter who is part of a group of people that have been marginalized in society for years has made me more aware of how I can use my voice and my vote for groups of people who don’t have the same opportunities as I do. Our family is more attentive to the needs of others. more sensitive in recognizing inequality and more motivated to support those who have to fight harder for things. Advocacy brings purpose to our lives and a greater connection in our community. Find causes to represent, find people to support, find friends who are marching for something and show up with a poster to march with them. You will be better for it. In the great words of Martin Luther King, Jr., “Life’s most persistent and urgent question is, ‘What are you doing for others?”

#7: YES YOU CAN.
My child works harder than anyone to accomplish things when the decks are stacked against her, and she proves again and again that she can do things that were once considered impossible accomplishments for kids with Down syndrome. This community is hearty and headstrong, and our advocate ancestors paved the road by refuting a whole lot of “Can’t”s with “Watch me”s. I’ve had lunch with a woman with Down syndrome who had just received her driver’s license, helped organize a dorm space for another who settled into college, and sipped wine with a mom who complained her son with Down syndrome never calls her anymore because he’s too busy socializing with his friends–all things that were unthinkable for people with Down syndrome 30 years ago. My daughter’s quality of life has drastically been made better because of three simple words: “Yes. She. Can.” Bonus: It works for moms too. Ever see a mom in a tough parenting situation and said to yourself, “I could never do that”? She probably thought that once too, and yet she’s doing it. Yes you can.

#8: Enjoy the Moment.
More than anything, raising a child with Down syndrome has taught me to sit back and enjoy the moments. So much of parenting is spent anticipating the next phase: When will he start walking? When will she write her name? When can I sign him up to play soccer? Each phase is quickly followed by another so that cherished moments flash by in a blur, and we often recognize how wonderful they were only once they are gone. We discovered early on that many of Nella’s phases last longer than usual. She didn’t walk until she was two, so we didn’t stress about the milestone and rather used her delay as an opportunity to sit back and soak up the smooshy baby phase–so many days of her snuggled in our arms or her head pressed against our chest all nestled in the baby carrier. And learning to read now? It’s so beautiful to watch it slowly unfold, and our entire family gets to be part of it, pulling out sight words games at dinner, pointing out letter sounds on signs, celebrating new word recognition with family cheers and clapping. Time has slowed down for the very best things in life, giving us the chance to recognize that these moments–this learning about the world–is what life’s all about, and it’s something to be savored and celebrated.

We are thrilled to celebrate unique abilities this week and are so grateful for our girl and the vibrant contribution she is making to our family, our community and this world that needs more colorful variety and compassion. If you love someone with Down syndrome and want to share what you’ve learned from them, leave a note in the comments.

If You Fall, We Fall, We All Fall Together

February 7, 2018 By Kelle

This story is shared with Lainey’s permission, with a little time and space between when it happened and when it was written to preserve what’s special and to protect what’s tender.

“Fifth grade is when it starts,” everyone told me, with eye rolls and heavy sighs. “The Drama. The Mean Girls. Those girls, man.”

So, I braced myself for what Lainey would face. Fifth grade was my last year of public school before my mom pulled us out to home school, so I don’t have very many memories of drama and girl fights, unless you count that girl in my church home school group who raised her hand all “Pick Me! Pick Me!” to read the Crucifixion story aloud for Easter service when she knew I wanted to read it. (#churchkidprobs) But that’s as good as it gets.

I know my girl is confident and cool, and I trust she has all the tools to deal with relationship issues with girls if they arise, but also: Circle of Trust eyes to all children in my path as I walk her to class in the morning.

What I’ve discovered this year though, is that the exact kind of girls I want my kids to be friends with–the kind ones, the strong ones, the kids who lift up rather than tear down–they’re out there. And this year, it was fifth grade girls who reminded me one of the most important lessons that sums up what a good friend should be.

To begin, let me explain a little something about our family: We’re not that sporty. We’re artists and writers and music lovers. Give us a creative writing essay, a visual aid for a science project, a costume assignment for a social studies character, and we will take it home. But sports? We’re only in it for the cool tennis shoes and the cute jerseys. As my dad recalls from his junior high basketball memories, “I just hoped the coach wouldn’t put me in. When he did, I prayed no one would pass the ball to me.” (See also, his cross country recollection: “I threw up a lot and crossed the finish line when they were folding up tables and track mates were already on the bus.”)

Not that we don’t hold out hope. When Dash was born, I remember my dad cradling him in the hospital room and saying, “I can already hear the announcer…’And Dash Hampton makes the winning touchdown!’ It’s a strong name for a football player…”

(three second pause before he continues)

“But just so you know, I can also hear, ‘And the first runner-up for the flower arranging contest goes to...Dashel Hampton!’” We all laughed.

“Either way, we love him and root for him, Dad. He’s going to do awesome things.”

All this to say, much like me, Lainey’s idea of hell is Field Day, the one day a year when the school dedicates an entire day to sports and competition, and students rotate through various sporting events representing their class as a team.

While some kids see this day as “FUN! FUN! FUN!”, my kid views it as “DEAR GOD, NO, THE PRESSURE.” Which, if you’ve ever been a fifth grader running the last leg of the relay race with twenty classmates watching and screaming “GO! GO! YOU’RE BEHIND! WE’RE GOING TO LOSE! RUN FASTER!,” you get it. It happened to me back in the day, and I wanted to throw the damn baton in their faces and scream, “It’s a fifth grade relay race, assholes, not the Super Bowl.” And then there was Brian Mueller who dramatically kicked the cone when I lost and huffed, “Because of YOU.” So, I totally get it, Lainey.

This awareness of sports not being “her thing” along with the pressure of performing and the fear of losing or falling or not being fast enough has made Field Day one of the most dreaded days of the year. So that morning in our house for the past several years has been spent encouraging “We can do hard things” and reminding her that it’s more about having fun and showing up for her team and not at all about winning or being fast. And as I push her out the door, I hope the kids in her class will do the same.

I knew it wouldn’t be an easy day for her, but I quickly forgot about Field Day after I dropped Lainey off this year until later in the afternoon when I got a text from one of her teachers.

“You would be teary-eyed if you saw what just happened on the field.” A picture came through of Lainey–all smiles–with a huge huddle of fifth-grade girls around her.

“She didn’t want to do the potato sack race,” the text continued, “She was afraid she would fall, but the girls got around her and started pumping her up. They were chanting–”

(and here’s where I lost it)

“If you fall, we fall, we all fall together.”

My girl who was so stressed about being the team mate who might disappoint, the one to hold back her friends from winning, was surrounded by girls who were telling her they didn’t care about winning as much as they cared about her.

That’s it, right there–the nugget of truth that will make girl relationships as beautiful as they can be, the guide to good friendships, the key to building and keeping a tight-knit community: When you rise, we rise. When you fall, we all fall.

They assured her that if she fell, she wouldn’t fall alone. They wouldn’t run off without her or make her feel bad for falling…they’d fall with her. This is what girls want, and the desire only gets stronger as we get older–to feel freedom to reveal our weaknesses and have them embraced and strengthened rather than judged, and to succeed from hard work and using our talents and be able to share our celebration with friends because our win is a win for all.

This year, I have been continually impressed by the beauty, love and support of fifth grade girls and the way they celebrate each other when one succeeds and help each other when one needs support. And I’m so proud to be able to use our own friends as examples as I teach my girls about strong women and the power we have to build community.

The afternoon I picked up Lainey from Field Day, I could not stop smiling as I texted her teacher: “You’re never going to believe what Lainey just told me…on Field Day:

‘Today was the best day ever, Mom.'”

P.S. And guess who just decided she loves tennis? Her Hampton genes are pulling through.

What I’ve Learned from a Ribbon Wand

January 31, 2018 By Kelle

It was an afterthought really—one last thing to put in her Easter basket last year, and it wasn’t until the thrill of the chocolate bunny and the jelly beans wore off that she even bothered to notice the ribbon wand that was still tucked into shreds of pink paper grass in the back of her basket. But it didn’t take long for her to love it, to find her early in the morning on the landing in front of our entryway where sunshine spills in like stage lights and where there is just enough room between the walls for her to freely twirl her wand while the ribbon dances in mesmerizing loops.

It’s been ten months now, and the wonder of the wand has only grown in strength.

“Where’s my wand?” she asks as she shuffles out of bed, eyes half-closed, before the sun rises.

“Where’s my wand?” she asks as the van door glides open for school pick-up and she climbs in, tossing her back pack on the floor.

“Where’s my wand?” she cries, frustrated, when she’s circled the house three times and still can’t find it.

I’ll admit, I was worried for a minute there. It’s not necessarily fair to her, but sometimes because of Down syndrome, I look at things through a different lens. Is she too obsessed? Is this attachment going to be a hurdle for her later? Is the way she shakes the wand stimming? (likely.) Are friends going to think she’s the weird “wand girl”?

And here’s what I’ve concluded: If weird wand girl is wrong, then I don’t want her to be right. On her own (because she’s smart like that), she drops the wand when she knows it’s not appropriate. Hands it to me when I ask for it, leaves it in the car for school, (hesitantly) turns it in for a consequence when she hasn’t followed directions. It hasn’t distracted from things that are important like learning and socializing (her friends love the wand) and paying attention.

Mostly, it does this magical thing though…it brings her joy.

It unlocks a little whimsy in her, encourages lyrical movement, provides a little comfort (like a lovie).

And then there are the bonuses. Like watching Brett get all excited when he’s figured out a way to fashion a new wand—a better wand—out of a dowel rod and some ribbon. I’ve found him in the garage, drilling holes into sticks, threading ribbon through—ribbon he picked out just for her, mind you, at a….wait for it…fabric store.

“Just wait, this one’s going to be her favorite,” he tells me with boyish enthusiasm that makes me want to renew our vows right there in the garage with the heap of Goodwill bags and broken lawn mower behind us.

Or there’s the day she was crying when a friend was over, and the little friend who said to her mama, “I’m going to make her a wand to make her happy.”

Or the old lady in the grocery store who saw Nella twirling her wand in the condiment aisle and left her cart for a moment to come dance in the loops of the ribbon, laughing and twirling her hands above her.

Or the readers who’ve found wands in store aisles across the country and have taken the time to take a picture and send it to me with a little “Thought of Sweet Nella” message.

Or the way she stands next to Gary, patient as ever, waiting while he untangles the 300 knots that have accumulated in the ribbons from all that twirling.

Or my precious Lainey who said the other day, “We should make Nella a Valentine wand.”

Or the swell of happiness I felt the night I stayed up before Christmas to hot glue peacock feathers on felt and braid thin ribbons into long strands to make another wand—I wand I knew she’d love—for a gift.

“Oh, so you think your wand can top my wand?” Brett teased.

The wand has brought a little magic to our family, and that makes me happy.

I know there will come a day—just as they’ve come for the blankets our kids clutched every night as toddlers, and the plush puppies they dragged through stores, and the favorite bunnies that were loved so hard, their whiskers fell off—that the wand will be forgotten, rolled under the bed with the dust bunnies and the lone sock that’s too small.

She will let go and find new things to delight her.

But I’ll never see a wand in life and not think of these years, these snap shots in my mind of her twirling in the sunshine at the front door, or my family hustling to find her favorite wand when it’s lost, or their efforts to make a new one for her, more beautiful than the last…and remember how wonderful it is to get lost in little things that delight us.

P.S. Most of our favorite wands are ones we’ve made ourselves or that have been made for us, but we do love this one we bought from Amazon and this one from Anthropologie.

Do you remember that scene in Inside Out when Bing Bong lets go so Joy’s wagon can make it up the wagon? And he fades away while memories of her as a little girl with him replay? I don’t think there’s ever been a scene in an animated movie that hit me in the motherhood jugular more (close second, when Andy leaves his toys in Toy Story 3 to go to college). I literally shook in the theater, tears rolling down my cheeks, thinking of all the little things my kids have loved and what a special place they will always hold in our family’s heart.

Does your child have a lovie or a cherished thing that will bring back all the feels someday? Do tell.