Lessons from Sam #10: Trust the ones who know and love you.

Infants who are born into healthy, stable environments learn to trust their reliable caregivers. These little ones experience love through attentive, ever-present people who will feed their hungry bellies, change their wet diapers, swaddle, snuggle, and soothe. Although babies lack the language and cognitive skills to articulate a normal adult-child connection, they are more aware than may appear. These crucial, early months outside the womb are essential for attachment and trust building, especially for kids who’ve suffered trauma.

 

 

Given Sam’s early stress, I have marveled at his healthy reliance on me. His entrance into the world was marked by the profound loss of his first family, the gain of his second family, and a lengthy stay in the hospital. While in the NICU however, he never displayed signs of worry that I might leave him. He seemed confident that I would show up to his bedside, detangle the myriad wires connected to his tiny frame, and hold him close for hours, his heart beating against mine.

 

 

A month later, our family pulled into the driveway and settled in at home, where we continued a gentle rhythm of care for Sam. We fed and burped him, sang and chatted with him. He never seemed concerned that we might miss a feeding or leave him to fend for himself. Through our attention and presence, he had the assurance that we would meet his needs. We were creating a lifelong bond, one that we continue to build.

These days, Sam trusts that I’ll lift him from his crib when he wakens and yells. He expects that I’ll provide food when he signs ‘eat’. When he wants to crawl up on my lap to read, he presumes I’ll gladly accept.

He has full confidence that I am for him and will choose to engage him whenever he invites me to participate. I’ll welcome his full-throttle hugs, even when they level me. My arms will hold and comfort him when he hurts and those same arms will be there to catch his compact 34 lbs. when he dives off the trampoline.

For over 3 years, I’ve had the opportunity to show up in Sam’s life. He knows that I’ll be there because I’ve been a constant presence over the past 1,156 days of life. Whether helping him to find a lost toy or holding his mask while he endures another breathing treatment, I’ve earned his trust. He can be certain of my fierce love and loyalty.

 

 

Sam is teaching me, too, that I can trust the ones who know and love me. These select few have proven dependable by showing up over time, accepting me in all my flaws, while pointing me to the One who made me. I can believe that they seek my good. They graciously sift through my words, listen well, and speak the truth, gently wrapped in love. These extraordinary individuals don’t assume the worst about my intentions; they know me well enough to know when I’m struggling and need extra support. They’re not afraid to reach out and ask the hard questions.

 

 

The past few months have been difficult for many reasons. When I’m tempted to retreat, to hole up and stay guarded, I come back to these remarkable humans, disguised as rare gems. I believe in the reality of their hopeful, humble words–their faithful presence in my life.

Sam teaches me to trust the ones who know me well and love me. I’ve been there for him, to care for and comfort, to laugh and play, to share victories and struggles. His simple approach to our relationship is a glimpse of what I have received from a small circle of people who’ve proven themselves worthy of my trust. And I’m so deeply grateful for the gift of these precious few.

Lessons from Sam #9: Stay Curious

Since his early days in the hospital, Sam has shown a keen interest in the world around him.

At just 2 weeks of age, he was gazing at the mobile hanging over his crib in the NICU. When I approached, his head turned toward my voice, his dark eyes landing on the book in my hands. The tube in his nose and the one down his throat, both connected to a beeping machine, did not distract. He was enamored with the stimulating bright colors on those pages.

 

 

After a few months at home, Sam discovered the burlap pillow on our couch. He marveled at the rough texture, his short, chunky fingers tickling the scratchy weave. At nine months old, he army crawled across our hardwood floors, reaching for books on the lower shelf or a stray pencil that had rolled off the table. Like most mobile babies, he frequently located our contraband: a bowl of dog food, the lamp cord, and a pair of dumb bells.

“His curiosity drives him. That’s gonna serve him well,” my dad said.

Pappy is right.

Now Sam opens and closes doors while fiddling with the hardware. He is fascinated with cracker crumbs, like a scientist watching cell division under a microscope. He marvels at the details in his favorite book: “Hand, hand, fingers, thumb…one thumb, one thumb, drumming on a drum.” He waves his right hand as he ‘reads’, studies his wiggling digits, and pauses just to behold his fingernails.

 

 

When we climb the stairs together, he grasps the dark wood banister, his fingers lingering over the intricate details on each railing. At the top of the steps, he runs to grab his Thomas the Train, and using his pointer finger, carefully pushes the wheels back and forth, making sure it’s track-worthy.

When I get out the jogging stroller, Sam rushes to the large, black rubber wheels. He moves one slowly at first, halting after each rotation to pick at the flexible spikes. When he realizes that he cannot remove these tiny, pliant quills, he continues to spin the wheels, shifting from one to the next, mesmerized by the whirling beneath his hands.

 

 

In my worst moments, I get annoyed with Sam’s constant need to explore EVERY.SINGLE.THING.  He transfers from trains to building blocks to pulling out wipes to dismantling shelves to emptying puzzles to climbing chairs to opening drawers to unplugging phones to playing with tape to retrieving banana peels from the trash.

I try to be patient when he insists on smearing ketchup on his potbelly or when he sneaks a taste of his paint brush. I realize that his exploration is a healthy indicator of his thirst to discover the unknown.

 

 

I also realize that Sam’s behavior is typical for toddlers and not necessarily specific to Down syndrome. Given his other deficits however, his demand to discover makes me feel like I’ve won the lottery. Sam may struggle to comprehend difficult concepts and higher level school subjects but I am thrilled to see his curiosity propelling him to learn.

I appreciate that he employs cause & effect when he pulls apart his peanut butter sandwich–to feel the sticky goodness as he opens and closes his hand. Almost every day, he lifts our mini trampoline to expose the components of its underbelly—so he can promptly tear out the foam padding. He finds zippers and random buttons and anything electronic—and with furrowed brow, zips and fiddles and taps keys.

Science and experience have taught me that curiosity indicates a motivation to learn and helps with memory retention. As a parent, specifically to a kiddo with different abilities, this buoys my spirit. Researchers have yet to discover why some of us are more curious than others. I suspect personality plays a role but I’m not sure how or to what extent. What I do know is that Sam encourages me to stay curious.

 

 

These days, I’m trying to stay curious about what I do not understand: technology and certain people. I’m like a baby reading Webster’s when trying to figure out apps and email lists and blog site work. Mastering technology feels effortless however, compared to the work required to identify with certain individuals. There are beliefs that I struggle to comprehend, perspectives far beyond my line of vision, no matter how hard I strain to see or rotate the angle.

Unaware, Sam spurs me on to stay curious. He pushes me to move through my complacency and frustration, to humbly try harder, to empathize a little more, and to ask better questions about what I do not understand.

Lessons from Sam #8: Good health is a gift.

As a kid, I got sick nearly every Christmas–ironically during those two weeks off from school. In the wee hours of the morning, I’d wake up to a sharp throbbing in my left ear. I’d debate whether to bother my parents but the piercing pain drove me to my mom’s bedside. After a quick change of clothes, she and I were out the door. Hours later, we’d return home from the dreaded ER with my signature cocktail: Amoxicillin and Tylenol with Codeine.

 

 

Ear infections were my nemesis, assaulting my immune system, leaving me confined to the couch with a heating pad beneath my left ear. One year, I was sick for three weeks straight, skipping school for an ear infection that ended with a punctured ear drum. Lethargic and pale with no appetite, I lost 10 pounds. Recovery was slow and my only interest was sleep. I remember thinking that I’d rather attempt a Van Gogh than endure that kind of pain again.

 

 

Two weeks of illness each year are hardly worth noting, especially compared to the more complicated issues that Sam has handled in his short life. When he was still swimming in his first mama’s belly, we learned that he had duodenal atresia (DA): a blockage between his large and small intestines. Without surgery, he could not pass milk through his digestive system. In the days before diagnostic testing, babies born with DA often died. After each feeding, they would vomit because their milk had nowhere to go. By the time parents realized that this issue was more critical than reflux, their babies were severely dehydrated and most did not survive. Ultrasounds, pediatric anesthesiology, and DA surgery have saved the lives of countless children. Sam is one of them.

The day after his birth, Sam was wheeled out of the NICU and into the OR. I kissed his soft cheeks, squeezed his tiny hands, and whispered “I love you”. Hours later, Sam’s kind and brilliant surgeon told us, “I basically went in and roto rooted. He had a web between his large and small intestines so it wasn’t as complicated as we had anticipated. He’s doing just fine.” While we were relieved by this good news, seeing his vent, multiple tubes, and the IV in his head was sobering. The anesthesiologist later told us that Sam’s airway is “really narrow”, which only deepened our gratitude for a successful outcome. One by one, his tubes were disconnected and after nearly a month in the NICU, Sam was discharged.

 

Sam, post-op. IV in foot.

 

Sam, post-op. IV failed in foot, moved to head. First pic vent-free!

 

In addition to DA and some minor heart issues that have resolved, Sam was born with a hearing deficit. He passed his newborn test but audiologist reports indicate fluid in both ears. He is due for new tubes in the coming months. We’ll see the audiologist in early 2018 to determine whether the tubes are effective or whether his hearing deficits are related to his inner ear structure.

Sam’s main weakness is his respiratory system. As I write, he sounds like a pig–snorting when he runs or dives onto the couch. We’re on our third week of fighting sinus congestion. His short, restricted nasal passages prevent fluid from draining properly and when it finally drains, he battles a nasty cough.

Kiddos with Ds get sick frequently due to their weaker-than-typical immune systems and once they get sick, their recovery is slow. What begins as a minor cold for Sam will often develop into croup or respiratory distress that requires oral steroids and daily breathing treatments for weeks.

I hope that Sam will outgrow these complications but I’ve accepted the reality that this may be a lifelong struggle. In the meantime, his ENT plans to remove his tonsils & adenoids, apparent obstacles to his respiratory health. We’ll have more answers in the next few months.

 

 

When Sam is healthy, we enjoy running errands, connecting with friends, walking to the park, and participating in local events. As soon as he gets a stuffy nose, I brace myself for weeks of medication and hibernation. I don’t begrudge the slower place, extra snuggles, or barking cough but I get discouraged for him–his discomfort, restless nights, and limited social interaction.

Sam has taught me that good health is a gift. His frequent allergy flare-ups and colds remind me to celebrate the healthy seasons when he breathes more freely and we don’t have to stock pile tissues. I silently rejoice when I can put away the nebulizer with its turquoise tubes and clear plastic vials that work magic on his lungs. The medicine droppers and cough syrups return to their bin in the bathroom closet and our counters are free of pharmaceuticals once again.

I understand that life offers no guarantees and can change suddenly, unexpectedly. I cannot predict Sam’s future health (or my own). Down syndrome can bring some potentially scary health issues but I refuse to fret about the unknown or wallow in pity when Sam is sick. Instead, I’m going to savor each day I have with my sweet boy and thank God for the gift of health, whenever it is given.

Lessons from Sam #7: Iceland is missing out.

In August of this year, controversy erupted in the world of Down syndrome and its advocates, as media outlets shared a disturbing trend in Iceland. The initial CBS News report aired a segment about the country’s new government mandate: all medical professionals are now required to offer genetic testing to pregnant women. You can watch the story here.

Prenatal genetic testing, which began in the early 2000s, is not new to Iceland. What is new is the government’s requirement to offer these genetic tests to expectant mothers.

 

 

I am not entirely opposed to a government’s insistence that their pregnant citizens be informed. There are complex issues at work that I do not fully know or understand. I am troubled however, by how this information seems to be used as a way to justify genocide. Of the pregnant women in Iceland, 85% choose to have the genetic tests. Of the 85%, 100% of women who receive a prenatal diagnosis of Down syndrome, choose to terminate their pregnancy.

100%.

In a country with 330,000 people, only two babies with Ds have been born each year. Sadly, Iceland is on track to eradicate an entire people group. Other European countries are not far behind, and in the U.S. about 67% of women who receive a pre-natal diagnosis of Ds choose to terminate. The U.S. tests differently than Europe so the percentage varies between 67-93%. For more details on the rationale of this statistic, click here.

I want to ask Iceland:

  • What do these numbers say about your values?
  • What kind of country do you want to create?

I’m not here to judge Iceland’s prenatal screening or the women who opt for the testing or the women who choose to terminate. While I grieve their choices to end the lives of their babies, I don’t pretend to know how they feel. I have not been given an overwhelming diagnosis. I have not lived their lives; their decisions are not mine to critique.

But I will say this: Iceland is missing out. She is missing out on incredible joy and laughter, mystery and delight. She is missing out on opportunities and adventures that can only be had with that extra chromosome. She is missing out on lessons that can only be learned when we connect with those who differ from us.

 

Sam with his siblings, July 2017.

 

If I could spend some time in Iceland and meet with just one expectant mother, I might lean in and listen to her share of her recent test results.

I might acknowledge her fears: Yes, a positive diagnosis of Down syndrome can feel terrifying, lonely, and sad. Yes, I wondered, too, whether I had the strength and courage to raise a child with differing abilities.

I might listen to her rage: The whys, the silence felt from heaven, the scary what-ifs.

I might sit with her in the shadows and hold her trembling shoulders while she grieves her loss—the death of a dream. I might say, “You’re right. You didn’t ask for this. I’m sorry that you hurt.”

After the weeping and the raging and the silence, and maybe after a few days or weeks, I might offer a bit of hope:

“You’re not alone. You don’t have to brave this on your own. There is a global community of families raising children with Down syndrome. There are adults with Ds who are thriving, living independently, finding meaningful work. This community stands with you. We are for you and we promise to walk this road with you—if you’ll have us.”

And then I might share with her a more complete picture of Ds–one she has not likely heard:

“Down syndrome is not a road many parents expect to travel but sometimes those roads offer far more beauty and wonder than we had planned. Yes, it will be hard and as with any little one, there are no guarantees. The baby you carry is a gift, full of possibilities and potential. Your tiny guide will take you places and introduce you to people you might never meet otherwise.”

Is anyone telling Iceland the truth about Down syndrome? Are expectant mothers presented with more than just outdated facts on paper, more than just future struggle and potential doom? Yes, Down syndrome can feel scary and overwhelming and leave these dear women doubting whether they can handle this parenting gig. But that’s only a small part of a much bigger picture.

 

 

Just look at Sam. His almond-shaped eyes turn to slivers when he smiles; his adorable round face fits so perfectly in my palms; his squishiness makes him extra snuggly; his dimpled hands reach for mine when we walk; his tiny feet, with that trademark space between his first and second toes, beg to be tickled. He is more than “Trisomy 21” on a medical report.

 

He is a human. He has opinions and emotions and quirks. He giggles and paints and shakes his bum. He likes trains and books and cookies. He babbles and hums and yells. He cries and throws tantrums and runs. He stacks blocks and holds a cup and helps to pick up toys. And when I say, “Good-night”, he wraps his chubby arms around my neck, leans back, and signs “I love you.”

Oh, Iceland. You really are missing out.

Lessons from Sam #6: The best way to learn patience is to wait.

When I was 11 years old, a high school cross country runner approached me to see if I wanted to join a small, after-school running club. Encouraged by her invitation, especially since she was a ‘cool’ high schooler, I agreed. Since that memorable day in 1989, I’ve been running. I joined our XC team as a 7th grader and ran all the way through my senior year.

The idea behind racing is, well, to go fast. To set a new PR (personal record). To get out ahead of other runners or pass as many as you can along the way. To earn a medal or a team trophy. I was serious about my training, elated when my race times reflected my hard work and disappointed when they did not. I never entered a competitive event with the intent to run slowly and enjoy the scenery. I don’t know any dedicated runner with that mentality.

 

 

For years beyond my blue cap & gown, I lived like my high school running days: always in a hurry, always pushing harder to get ahead, and making little time to slow down, to rest, to savor the beauty around me. There was too much work to be done, too many experiences to cram into the hours. I had finish lines that looked more like credits to complete, projects to finish, programs to lead, jobs to land, adventures to take. I ran full throttle, afraid to decelerate and miss an opportunity.

At the end of my twenties, my firstborn daughter arrived and less than two years later, my firstborn son. Motherhood brought a different tempo but I still had this need to accomplish–to prove my competency. I moved through my planned days with speed and efficiency, wanting my kids to set records in the following events: potty training, talking, reading, art, and writing. And yes, I was still lacing up my running shoes.

Then, something shifted in our home & in my heart in the fall of 2012, when our family began to seriously consider adopting a child with Down syndrome.

 

 

Nearly two years after those prayers and dreams began, our beautiful Sam was born. His adoption and hospitalization forced me to slow down, to wait. I was powerless to speed up the legal process. Unlike running, I couldn’t train harder to improve my time so Sam could be discharged. More sprint work couldn’t rush his body to heal from surgery. I couldn’t force a judge’s hand to sign the papers more quickly. This was expert-level waiting and I was an amateur.

 

Sam, 1-day old. Post-op, August 2014.

 

After a month out of state, we brought home our sweet boy, who continues to grow and develop on his own time. His slower pace is an unexpected gift to his overachieving mom consumed with the proverbial finish line.

One might think this new way of being would frustrate the bejesus out of me but I’m grateful for the opportunities to wait, to relish each day with Sam. Instead of rushing from one milestone to the next, trying to do more and be more, proving and pushing ahead to appease my need to excel, I’m learning to treasure these unhurried days of books & walks, puzzles & paints. Sam is showing me a healthier, more meaningful way.

 

 

In the past 3 years, I’ve waited for Sam to heal, for the hospital to discharge him, for legal papers to be signed, for his adoption to be finalized, for clearance from his specialists, for lab work, for procedures to be scheduled, for therapies to be arranged, for doctors to return my phone calls, and now, for the results of his recent sleep study.

Running & racing taught me how to move more efficiently, how to increase my speed, how to improve my time, and how to pass my opponent. Those lessons certainly have value but the arrival of my baby boy with an extra chromosome has taught me a lesson that has nothing to do with speed or efficiency. He has altered my pace and expectations. He has shifted my perspective from a deep need to prove to a deeper need to rest and receive the gifts that God has given to me. Sam is teaching me that the best (and often only) way to learn patience is to wait—for milestones to be met, for answers from doctors, and for learning to take root as he matures.

I still wear my running shoes. I still race, though with less intensity & greater enjoyment these days. My steps are slower with Sam but the joy within me as I get to watch him learn & grow means more to me than any personal record or medal.

 

Lessons from Sam #5: We are more alike than different.

Parenting a child with different abilities has revealed to me my polar tendencies.

Sometimes I want our son to blend in with typical children, silently begging for people to see him as they would any typical child. Other days, I’m searching the internet for resources to help improve his skills, asking for more therapies, pushing for clarity from his specialists, calling state senators, or voting for politicians who will preserve current laws and pass new laws that support those with disabilities.

 

Sam, Summer 2017.

Some days I feel more relaxed about his future, believing that he’s gonna be okay. He’s got enough spunk and determination to handle life. He has a great support system that promises to help him navigate the complexities of adulthood. And he is fortunate to live during a time in history when so many people with Ds are thriving, finding meaningful work and relationships, building careers, attending college, and living independently.

Then there are days when the thought of my own death terrifies me. What other mother will care this deeply for Sam? Who will defend, support, and encourage him? Who will grab our world by the shoulders and shake it until it believes Sam to be worthy of life and opportunities?

I’m such a blend of angst and hope, fear and trust.

On the days when I’m more angst and fear, I think of my spirited friend Finn, who brings hope unaware. Finn, who was born 4 months before Sam, is a blonde-haired, hazel-eyed dumpling of a boy, full of mischief and wit. He is the son of our dear friends, Eric & Sarah. When he and Sam get together, Finn is quick to offer his toys, to show Sam how his new tractor works. Finn is kind even when Sam invades his personal space by chasing him for a hug.

 

Finn, Summer 2017.

 

Aside from sharing his toys and tolerating Sam’s abundant affection, Finn sweetly refers to Sam as “Same”. Despite his northern upbringing, Finn seems to have a more southern drawl, though I’m not convinced that this name choice is only a matter of enunciation. I think Finn may be on to something.

“Same”, he says. “Come play!”

Same.

As in “alike”.

As in “not so different after all.”

As in, “Hey, buddy. You’re my friend. You’ve got this extra chromosome but I don’t dwell on that. I see you as a kid who wants to play and laugh, just like me. Here’s a toy.”

I liken the connection between Finn & Sam to the relationship between Ron Hall, a wealthy art dealer, and Denver Moore, a homeless man. In their beautiful memoir, Same Kind of Different As Me, Hall & Denver share the story of their *unlikely* connection. Despite their skin color, their history, their social status, their strengths & weaknesses, they recognize their shared humanity and build a lasting friendship as a result. These poignant words from Moore speak to their bond:

“I used to spend a lotta time worryin’ that I was different from other people…

I worried that I was so different from them that we wadn’t ever gon’ have no kind a’ future.

But I found out everybody’s different – the same kind of different as me.

We’re all just regular folks walkin’ down the road God done set in front of us.

The truth about it is, whether we is rich or poor or somethin’ in between, this earth ain’t no final restin’ place.

So in a way, we is all…just workin’ our way toward home.”

 

I’m so thankful for our young, towheaded friend who is willing to walk this earth with Sam, who sees him as a ‘regular folk’, and who models the message that Sam brings to the world: we are more alike than different.

Lessons from Sam #4: The R-word feels personal.

If you know me well, you know that I consider the word ‘retard’ or ‘retarded’ to be more offensive than any swear word. In fact, most swear words feel benign to me, when compared to this (and other) derogatory slang words that reference certain populations.

I find the R-word to be divisive, elevating one human above another, separating our humanity into ‘us’ and ‘them’. Once a clinical term used to label people with intellectual disabilities, the R-word has now been removed from *most* medical journals and professional conversations. Unfortunately, it is still spoken in our American culture, whether in jest, without thought, or with the intent to mock another person.

The R-word is often used to label an idea, object, or person as frustrating, stupid, foolish, or worthless. Whether or not the R-word is expressed mindlessly, it still makes me cringe. While the person speaking might think the word is ‘no big deal’, I (and many others) find it to be degrading, a personal insult to my friends and family with special needs, specifically Sam.

 

Our sweet boy was born in August 2014. Released from hospital in September 2014.

 

I’m grateful for the steps our society is taking to remove the R-word from our vernacular and yet I still hear it at least once a month. I’m compelled to keep speaking out and offering ways to improve our language, especially as it relates to my own family.

Here are a few practical ways you can help to stop the use of the R-word:

  • Think before you speak.
  • When you realize that you’ve said the R-word, apologize. I’ve had friends sincerely apologize to me, as soon as they realize they’ve said it. Forgiveness is swift and we carry on with grace.
  • Replace the R-word with a better descriptive. Take the time to think of a better way to explain your thoughts or reference to a particular person.
  • Address the R-word when you hear it. Politely suggest that the speaker find a better term—one that does not insult.
  • Practice people-first language. When I talk about Sam, I never announce that he has Ds, unless absolutely necessary. In that case, I say, “Sam has Down syndrome” or “my son, who has Down syndrome.” I don’t say, “My Down syndrome son” or “my Downsy kid.” Always refer to the person first. If a disability is irrelevant to the conversation or situation, simply leave it out.
  • Get to know someone with Down syndrome. (Come over to our house and hang out for awhile!)

You may be wondering why advocates make a big deal of the R-word. I offer my reason:

The way we think about people often starts with our words.

Abusive language leads to dehumanization. In the past, we saw this as the cruel Nazis used vile words to describe the Jews. We now see this occurring in countries and cultures that view people with Down syndrome as nothing more than a burdensome fetus to eliminate. When we use derogatory slurs to describe our fellow humans, we begin to *slowly* justify the ill-treatment and eventual annihilation of entire populations.

We don’t have to settle for this in our diverse country, dear readers. We can choose our words carefully. We can eliminate language that does not serve our fellow humans. We can continue to affirm the worth of every person, who was made in the image of a loving, creative God that makes no mistakes.

Enclosed is a video that shares a small glimpse of Sam’s journey to our home. He is not a label or a slur or a sub-human. He is an incredible gift to our family, to our world.

Samuel Creed Carper Slideshow complete

 

Lessons from Sam #3: Welcome everyone.

Our diverse world provides countless ways to look at life. In certain communities and with certain individuals, various beliefs and people are welcomed. In other places and with other people however, there is resistance (overt or subtle) toward those who think outside the majority, those who offer a different perspective.

As a person with a strong sense of justice and as the parent of a child with Down syndrome, I am deeply aware of exclusive places and people. I pick up on social cues, looks, tones (online or in person). I can sense when I am not welcome, when a community does not feel emotionally or spiritually safe.

Sam’s life has opened my eyes wider to discrimination. I notice those who are uninvited, those less likely to be accepted in a culture that often ignores or rejects those who don’t fit a certain standard. I’m grateful for the tireless efforts of so many advocates, from parents to politicians, who have graciously fought for inclusion and equality for those with differing abilities.

In our home, we have endeavored to create an environment of acceptance. When people come over, we want them to feel loved, valued. Sam does a stellar of job of this. If he hears a knock at the door, he runs to greet our guests. He hugs and touches people, even when they politely try to pull away. (We’re working on healthy boundaries).

At this stage, he’ll engage with you no matter your political party affiliation, your social status, or even if you’re unkind to him. He is not concerned with whether your English is broken, whether or where you attend church, or whether your collar is blue or white. He will not exclude you for your smoking habit or public moral failure or strong body odor. Those identifications, which carry heavy social implications in our *Christian* culture, do not determine how Sam responds to anyone. He just welcomes people. All people.

Sam welcomed his baby sister in January 2017.

 

Author Shauna Niequist says,

“The heart of hospitality is about creating space for someone to feel seen and heard and loved.

It’s about declaring your table a safe zone, a place of warmth and nourishment.”

 

How ironic that our Sam, who was born into a marginalized population, seems to effortlessly create space for people to “feel seen and heard and loved.”

I can’t be sure whether his personality or his extra chromosome makes him extra inclusive but I can be sure that I want to do a better job of receiving others in the same way: arms wide open in a posture of acceptance, finding every person worthy to be welcomed.

Lessons from Sam #2: Communication is more than verbal skills.

After reading through Go, Train, Go! (for the tenth time), I lift my 3 year-old boy into his crib where he plunks down for a nap and grins up at me. He shoves his grey bunny toward me, a familiar gesture that invites me to play our homemade game of “Hop, Hop”. I take his bunny and say, “Hop, hop, HOP!” Each ‘hop’ grows louder as the stuffed animal jumps closer to him. Eventually, the bunny lands on his face and smothers him with kisses. Laughter ensues as I repeat the hopping until Sam is giggling so hard that his mischievous, almond-shaped eyes seem to disappear. As he settles, I tip toe quietly toward the door, watching him out of the corner of my eye. He laughs again at my facial expressions, mimics me, and lays his head down. I turn off the light and close the door.

In this daily routine with my tot, the only word used is “hop”. We share gestures, giggles, side glances, and tickles. Even my creeping toward the door asks him to respond in some way.

 

Reading with big brother, Jude. Spring 2017.

 

Merriam-Webster defines communication as “a process by which information is exchanged between individuals through a common system of symbols, signs, or behavior.” If this definition is true, and I believe it to be, then Sam is one gifted communicator.

Speech delays and deficits are common in kids with Down syndrome. If you know Sam, you know that he rarely says any words, though he will occasionally, clearly articulate “all done”, “Dad”, or “Mom.” While I look forward to the day when he and I will chat together, I’m delighted that we’ve found other ways to ‘exchange information’ in the now.

Here are some of the ways that Sam speaks:

Sign language: Sam knows about 45 ASL signs. My personal favorites to observe: iPad, cracker, and Jesus. He seems to like those signs, too. In that order. Apparently, in the mind of my toddler, technology and pita chips rank higher than the Son of God. Please don’t judge.

Hand gestures: Sam uses our homemade hand gestures to choose a song. For example, he holds up his right pointer finger to request “This Little Light of Mine.” He waves that same pointer finger really fast to tell me to increase my singing speed.

When he wants an object out of reach, he points or waves.

When looking at books, he uses grand gestures to animate the story.

 

 

Grunts & arm flaps: Sam grunts and flaps his arms when he’s excited or frustrated. For example, if he is asked to finish his veggies, he grunts and straightens his arms to convey his frustration. He lets me know that he’ll comply but he won’t like it. If he gets a cookie, he grunts and flaps his arms to show his excitement.

Smiles & laughs: Sam feels happy about life and finds a particular expression, person, or item hilarious.

Impish grins: Sam thinks his misbehavior (like sitting on his baby sister) is funny.

Tears: Sam feels sad or hurt.

 

 

Comforting his baby sister, Eden. February 2017.

 

Hugs: Sam is glad to see you, offering comfort, or attempting to delay bedtime.

Tackles: Sam is inviting you to play and wrestle.

Humming with his mouth open: Sam is singing a song with a mix of “ahs”, “uhs”, and “dos”.

Sam is teaching me that communication is more than words. While I know that vocal clarity will likely be a lifelong journey for Sam, I’m grateful for his desire to connect, especially when he sits on my lap, swivels to face me, cups my face in his pudgy hands, and signs “Jesus loves you.”

He may not be able to articulate words *yet* but his ability to communicate feels like a gift.

Lessons from Sam #1: Comparison often leads to pride or discouragement.

As the parent of a child with different abilities, I tend to be hyper aware of the comparison games we play in our culture. I’ve grown weary of the social competition in which our kids become pawns we move around the proverbial chessboard, always looking for a checkmate.

Comparison usually does one of two things: It can pull us toward pride or leave us discouraged.

I understand that exchanging information about our kids can be a helpful way to gauge their progress, to get another perspective. I also understand the desire to share our enthusiasm about our kids’ accomplishments. I want to trade info and celebrate, too, as long as our goal isn’t to one-up others or assign value to ability. To do so can lead to pride or discouragement, depending on where our kids land on the developmental map.

 

 

When my two older kiddos were born, I read through the What to Expect series with a big, fat magnifying glass, taking copious mental notes. I did all I could to help them excel in every area. As they grew, I compared them to their peers, hoping to keep them ahead developmentally. I actually wanted them to reach their milestones at record pace. Ridiculous, right? I could feel my competitive nature at work and I didn’t like it.

When Sam came along, I gave away those books. Soul work and parental experience were significant factors in this shift in perspective. I wanted to enjoy our new, sweet bundle without focusing on the speed of his milestones, especially compared to his typically developing peers.

 

Photo cred: Richelle Gregory Photography

In Sam’s first year of life, every doctor visit reminded me of his slower development. Medical paperwork revealed his progress as literally “off the charts”: at six months of age, he was in the 0.083 percentile for his height. There was no line on the age/height/weight graph. We recently celebrated his third birthday and he remains well below the typical percentiles in height and weight. His IEP indicates deficits in every area, a sobering (though not surprising) reality that tempts me to discouragement.

BUT.

I am learning to compare Sam to himself. While I celebrate his milestones, give thanks for his health, and want him to excel, I understand most importantly that he’s a person. He’s a soul. He’s my son. His abilities and placement on a chart do not determine his worth.

Will he know how to read? I hope so.

Will he know how to catch a ball? Tie his shoes? Jump? Eventually. Maybe.

Will he know how to sing? He’s trying.

Will he know a skill well enough to earn some money? Possibly.

Will he know how to live independently? Maybe.

Will he know how to effectively communicate to others his needs and wants? I pray so.

 

 

When I look at Sam, I don’t see stats in black ink on white paper. I witness something more that begs me not to compare him to others. I see a little human learning how to love and relate to his world. I see a cuddly boy who tickles his sisters, wrestles his brother, snatches warm cookies from the table, signs “Jesus”, and grins when he’s been naughty.

Sam is teaching me that he will learn and grow at his own pace. Instead of comparing him to others, I’m praying for wisdom and working to help him achieve his full potential. Seems to be a better use of my time.