“The first problem for all of us, men and women, is not to learn, but to unlearn. We are filled with popular wisdom of several centuries just past, and we are terrified to give it up.”
Gloria Steinem may have had women’s rights on her mind with this quote, but it rings very true for our friends with Down syndrome. I was so scared when I received Wil’s diagnosis. Why? Because of an outdated belief system handed down to me from centuries just past. I had no other frame of reference; it was what I knew and the unknown is a scary place.
When I opened my mind; when I truly looked at Wil and accepted anything and everything to come — all the knowns and most importantly the unknowns — is when my world first cracked open, then burst open, and love flowed in place of the fear.
In embracing our vulnerable population we embrace our own vulnerabilities.
We crave Love. Love is the base of all things. Love is survival. We crave, live and breathe for Love.
In embracing individuals that we previously misconceived as having lesser value, we find in fact their value is greater than ours as theirs is the truth-pathway to LOVE. In embracing those we do not fully understand; we must find within ourselves a deep patience and seek to view life in new and fresh way. It is in this way we find Love — a love deeper than we knew existed. A love that touches and speaks of God. We feel God and His Presence even if we are not religious; even if we are non-believers. Whatever we believe, we cannot deny what we feel. We call it Love. And yet it matters not what we call it. It only matters that we FEEL it.
Once we are touched by that feeling, we crave more. This Love lifts us, lights a fire within us. We find it hard to believe it was something we closed ourselves to. But we did not know we were living behind a closed door until our child with a disability; or our experience with individuals with disabilities opened the door for us. The blast of fresh air is what alerts us once we open our minds. It blasts us with a gust, not unlike a hurricane; it forces us out of our closed mind so far that we can never go back. We never want to go back. In fact all we want to do now is pound on closed doors in our desire that those behind the closed doors know this Love.
We see the fear, and know the difficulty to get past that fear. But once you feel the blast of fresh air in your face you cannot but want more of it, and want more of it for others. And so you advocate for your child, but it is so much more than equal rights and acceptance. It is a Love, a Love for all that lays hidden. A Love that is locked away inside of us. We are scared of it’s immensity. But in the fight for your child you release it. You must, for their sake more than yours. And you find in this unlocking a Love greater than you ever knew existed but it does exist in immensity all around you. And when you breathe it in fully it grows and grows and grows. There is no end to it, and though it is bigger than you could ever conceive, even a small slice of it breathes new life into. You cry in the sheer love that you feel. And you know you can never run out of that love because it is always there, it is bigger than anything your mind can conceive.
You must re-open yourself to this Love every day. Recharge yourself with it. When the doors start to shut due to habit or other’s actions — your child opens the door for you with a kiss on the cheek, a simple gesture, or a silliness. And when you try to describe this type of grand simplicity that has the power to open a door, those behind closed doors see only the simplicity of the gesture, as they have not opened themselves to the grandness. They refuse to open the door to this Love, staying in a sheltered space they know. Fully unaware that the immensity of Love is available to them if they only unlock the door. But when we don’t know, and what we only know is behind the door there is great security in that. There is great control in that. And we think we are thriving when really we are not. We have created a life that feels good behind the closed door. Even when it doesn’t feel good, it is what we know — how terrifying to go outside of what we know.
When we spend time to truly know and understand our vulnerable population, oh, what LOVE. It is open, it is free. Our children never tire of opening the door; it is their nature. It is on us to open ourselves to them.
You will know when you feel the Love. This Love is yours, it is all of ours. It is in endless supply. Let us circulate it. Let us ventilate closed doors. Let us embrace our vulnerable population.
One of my favorite parts about Special Olympics events is when I thank the volunteers for their time, and they say, “No, thank YOU! We are so very thankful for this opportunity.” And in further discussion you find they volunteered once as a “good deed” and now it’s 20 years later and they wouldn’t miss it.
Many of us seek ease as happiness; or to step in for the sole purpose of a “good deed” to check a “feel-good” box without deeper intentions. But when we make a choice instead, to dive under the surface, to see what this “other life” really and truly means, we find the challenges are actually beautiful in their own way. It’s a new adventurous world that cracks open our hearts in a way we didn’t know possible. Like the Grinch’s heart expanding outside of his chest. But he too had to dive off his own hill with one intention, only to come back with a whole new unintended perspective.
Life can be deeper if we allow it to be. It’s up to us to make the dive.
Most of us don’t choose to be caregivers. Then next thing you know, you find yourself standing on a house of cards.
Last night a friend was at a neighboring table for dinner with her husband and another couple. After they had eaten dinner, the other couple left. As our friend tried to leave, her husband refused. As he’s endured multiple severe health issues, life circumstances now have our friend in the dual role of wife and caregiver. He wouldn’t leave because he’d forgotten he’d eaten dinner, and thought his wife was trying to make him leave before eating. Try as she might to convince him he’d already eaten, he sat steadfast.
Though the differences are many, I saw many parallels in Wil’s determination not to be swayed and our friend’s husband’s determination. I intimately knew the tears in her eyes. I felt her frustration not of just that moment, but of all the moments built as carefully, patiently, diligently and lovingly as a teetering stack of cards; that in just one moment, comes falling down.
After the cards collapse a number of times, you just feel so tired of it all. All of those cards, all over the floor, and one by one you must build them back again. Sometimes, it goes smoothly, and sometimes that one card keeps falling so as it’s impossible to build on it.
I knew this cycle with Wil. The only two solutions our friend had at this point were to wait him out until he decided for himself it was time to go (which could be hours) or a fresh voice to break the spell (as the caregiver’s voice is heard so many times, pleas can fall on deaf ears). It is a new face, or a new voice, that often breaks the spell.
My dad was the one who stepped in, and I looked at our friend, our eyes connecting in a knowingness. It’s hard, and no one asked this kind of hard, but there is so much love here, so much that we’d do for our loved ones, that makes the hard parts both more challenging, and yet strengthens us at the same time. And when friends step in to help, the wobbly card steadies and we can start building again.
Just before the holidays, a member at work shared with me that she was bringing her mother, who has dementia and lives in Florida, back to Michigan for a visit. She said, “Though Wil and my mom have many differences, I now know how you feel when you fly with him. You just don’t know if they will cooperate or not, so you prepare the best you can. Then you find out there is always something you didn’t think of, and things fall apart. And other times things go so smoothly that you wondered how you worried at all. You just don’t know.”
While visiting my parents in Florida, Katherine, Elizabeth, Wil and I went to the Naples Zoo. Wil gets hot easily, so we went on the coolest day. When he grew tired and too hot, I found an area by the zebras which was shady and he really enjoyed. Though Wil is very capable of walking the zoo for the day, its his building overstimulation with the heat, with the crowds and with the animal noises that eventually get to him.
Every year I find ways to keep him at the zoo longer. Every year I learn from the previous year. But I never let him sit it out. Because every year Wil learns how much more he can do. I’m fortunate that the twins can walk off to enjoy the zoo on their own, and circle back to Wil and me, instead of stopping every time Wil and I do. They know how this works. We build the house of cards together.
When Wil finally hits a wall after stops and starts, he still has to make his way back to the zoo entrance. As this zoo is near my parents’ home, they are fortunately available to pick Wil up when that “wall” is hit. I sit with Wil as long as he needs me to, as his will to walk to the entrance is his only way out.
We don’t choose our situations; they choose us. But we do choose how to utilize the time within our situation. We do choose whether to keep building, even after the cards have fallen. When times get hard, locking tearing eyes of understanding mean more than words could ever convey. They give us strength to build again and again; as many times as it takes.
Internal victories are what carry you and lift you through the hard times. Even 30 more minutes at the zoo on this visit delivered an internal joy with iron-clad strength—a strength and joy that will not fade with time or circumstances. I can build a million cards with the super-sonic strength of 30 extra zoo minutes many take for granted.
Caretaking is unpredictable and challenging, yet it brings out our best, and brings us all together if we allow it to. It’s what humanity is all about. (But if you challenge a caretaker to a house of card building game, they will mercilessly kick your ass.)
Most mornings these days Wil wakes up happy and cooperative; he’s nearly sixteen years old now. We have a few morning struggles but nothing like his earlier years. He enjoys school, seeing his friends, and his independence. We talk about what day of the week it is, the month and the season. Wil keeps close track of the days and the month, but occasionally will get thrown off on the season (Mother Nature herself does the same!).
He picks out his clothes and what he wants for breakfast the night before so both are set in his mind. These choices, even made ahead of time, are what can make or break a morning.
One morning I made a ham, cheese & spinach wrap per his previous night’s request. Elizabeth woke him up as I was coaching. When I arrived home, Wil was seated on the Lazy-boy, still in pajamas, the ham, cheese and spinach wrap on a plate next to him untouched. There were only 10 minutes left before we needed to leave for school.
“Mom,” Elizabeth said, “he won’t eat it. I’ve tried offering other things but he gets more upset. So I’m giving him a minute. And I need to get ready for school.”
“Well, good! I’m starving!” I said and took a huge bite of his wrap.
“Mooooom!” Wil said. I was relieved to hear humor in his voice. I jumped on the opening he provided before he slammed it shut. I took another bite and danced around.
“Geez, mom!”
“What do you want to eat? I’ll make it quick. You need to get dressed.” I said.
Wil looked up at me; he contemplated.
A long time ago a sales manager commonly repeated an acronym: SUAL (shut up and listen).
It’s sound advice. Any further rushing or pushing takes control from him, and thus requires even more time for him to unravel.
I SUAL.
I SUAL.
I SUAL.
“Turkey hot dog!” He said.
I sighed in relief. “You got it! Go get dressed, quick like a tortoise!” (I used to say fast like a rabbit, and he’d reply slow like a tortoise, so this joke usually got him moving).
If this were a game of curling, I’d be the sweeper. Vigorously, patiently, tactically, I smooth the path for Wil to make his way — curving at times — successfully, independently onto the target.
Wil double-stepped down the broad concrete steps. He paused. Then he threw both arms back, hinged forward at the waist, and propelled himself over the last step. Mid-air he hollered, “Jump!”
He landed flat-footed and straight-legged.
Dang, when will he ever bend his knees?
“Mom, jump!” He yelled.
I exaggeratedly swung my left arm back, but kept my right elbow tucked in tight to protect a cup of lidded coffee. I jumped and landed softly with bent knees, then lifted my right arm in an effort to match the flow of my coffee. A deep brown dribble of coffee escaped the small hole in the lid and slid into the rim. I sipped it from the rim and raised my cup to Wil.
“Woohoo!” He yelled.
“Woohoo!” I yelled back.
“They are angels.” A woman said. I spun around. She sat on one of the ornate ice cream parlor chairs in front of the coffee shop. She was dressed in full-on Kelly green. I could barely discern where her shirt ended and her pants began.
“I’ve worked with many Down’s people. All angels.” She said.
I heard Elizabeth and Katherine, as clearly as if they were there, burst out in laughter. Then in my mind I heard Elizabeth say, “Does an angel throw your favorite comb down the heat vent?”
My mom-mind immediately targeted the woman’s lack of person-first language. But like Wil’s straight-legged landing, a correction would have stolen the meaning of the moment. The woman clearly cared about the person; she cared enough to reach out to a stranger and share the ultimate compliment.
So I smiled. I listened. Then Wil got antsy. I wished her a blessed day.
Still, her comment sat like a lead ball in the pit of my stomach. I needed to reach down deep, lift it up and roll it around until I could identify what the weight meant to me.
Then I saw it…she had put individuals with Down syndrome in a box. It was a beautiful white-feathered box placed on the very top shelf, with the utmost care and kindness; but it was still a box.
I realized I had put myself in a box too; labeled: to educate or not to educate. It’s a grown habit that becomes ingrained over the years of hearing stereotypes both well-meaning and not. Of watching your child reach milestones in micro-moments, so even the slightest bend in the knee does not go undetected.
But sometimes moments are meant to be moments. Moments to take a leap and land just the way you are. Moments to accept a stranger’s kindness by her intent rather than her words. Moments to unravel what sits heavy with you, unwrap it and let it go.
If there was an angel that day, it was one who whispered the vision of Katherine and Elizabeth in my mind; filled with laughter and words to match the moment and burst open the box.
After coaching this AM, I pulled into our attached garage.
Wil, hearing the garage door lift, opened the side door from our house into the garage. He stood there, with his short hair a fuzzy mess, navy blue donut pj bottoms, and one of his many Buddy Walk t-shirts.
I responsively smiled at him through my car window. I shifted the car to park, lifted my hands and raised the roof. He raised the roof back. I stirred the pot, and he stirred it back. I rocked my shoulders, he rocked his and added a hip twist. I hadn’t even gotten out of my car, it was barely 7:30AM, and our day was already groovin’.
I wish I could bottle this stuff up and spread it around. Our kids w Ds bring just the right dose of joy this world so desperately needs right now.
Our kids aren’t happy all the time, but wow does Wil know how to bring out happiness in others.
When Wil was born, I wondered on his differences. How would they separate him from making friends? How would his differences separate him from living a full life? What I didn’t know was Wil’s differences would become woven so deeply into our daily lives that they would be our norm.
One example is Wil’s dancing. When the mood strikes, Wil busts a move down the aisles of Target, Busch’s or Meijer. Wil gets jazzed going shopping with his sisters, because there are mirrors hanging everywhere to dance in front of.
Chopping vegetables with me for dinner is always a hip wiggling activity for Wil, and a car ride another opportunity to belt a tune out the window.
Wil’s had the music in him for so long, it’s ingrained in our lives. I forget that not everyone dances whenever the mood strikes, or bounces to the beat in their car seat, until a stranger gives Wil a smile as he rocks out to his own tune. I smile inwardly to myself, as I smile outwardly back to the stranger, how one-dimensionally I once viewed what differences meant.
Wil’s dear friend, Sarah, is a ballerina. Sarah is graceful in every sense of the word. She is tall and lithe, and practically floats on air when she walks. Wil has low muscle tone so he lands flat-footed with a slight side-to-side gait. I love watching the two friends walk together, because they could not carry themselves more differently. Sarah, however, always makes a point to walk at Wil’s speed, and when he talks, she leans over so they are eye-to-eye. Then, I can almost predict at some point during their conversation, Sarah will throw her head back laughing at something Wil shared with her. And they always find time to share a dance. It’s been that way since preschool.
On Wil’s 14th birthday, Sarah wrote in a beautifully-crafted handmade card to him:
“I am so lucky to know you. You are so amazing and always make me laugh. Goodness, you’ve gotta be the funniest person on this Earth! Your laugh is so contagious. I always have fun walking around with you and talking about lots of things. Hope you have the best birthday bud!”
As I read Sarah’s words, my eyes welled with tears. I now wonder, these 14 years later, how on earth did the differences I once so worried on become a true blessing? That this life, that such friends, have woven themselves into the dance of our lives as our norm.
At one time differences stopped me in my tracks. Now, all I see are blessings in the dance.
As Wil has gotten older, it’s clear he needs closer friends with Down syndrome. He has wonderful friends at school that love and support him fully. As the gap in abilities with his typical peers grows and social lives expand, Wil also needs to cultivate friendships with those whose abilities match his.
Manny’s family lives in the neighboring town, so his mother, Laura, reached out to get our boys together. Manny will be entering 9th grade, and Wil 8th.
When Manny arrived at our house, it was our second get-together. We had met at Portage Lake the previous week and a friendship was formed. Though both Manny and Wil had talked of this second get-together for days, when Manny entered our house he went to the couch and Wil retreated to his bedroom. They were overwhelmed.
I took a big sigh of relief. Why? Because this was normal behavior not for just one of them, but for both of them.
I coaxed Wil out of his room, and Laura coaxed Manny to show Wil the toys he brought. Manny won Wil’s heart by bringing him a can of Sprite to drink with lunch.
The two laughed and were silly with lunch, and that broke the ice. But after lunch, they separated again. Even this separation was refreshing to me as it’s usually Wil I’m coaxing while others wait. This day, we were all gloriously on the same page, even if Manny and Wil were apart. Manny’s older sister, Grace, was there, and she kept the conversation going engaging both Wil and Manny. Like Katherine and Elizabeth (who were at a birthday party), this is Grace’s normal, and she handles it, well, with grace.
Laura suggested a movie to start the ball rolling again. And roll the ball we did — Manny chose Hotel Transylvania 3 and we played a game where we sat on the floor and rolled the ball to each other. When the music in the movie played, that was the kryptonite to whatever was holding them back. Manny and Wil broke out their dance moves. Then Wil broke out his karaoke player and jammed to Luke Bryan while Manny jammed on his Bluetooth mic he brought from home.
After the jam session, we headed outside to the driveway to ride bikes. Manny tried Wil’s recumbent bike while Wil rode his bike with training wheels. The handles on the recumbent bike are what steer it. Manny is used to using an elliptical machine, so he was pumping the handles back and forth zig zagging around. I thought that was a smart technique. With a few more tries, he figured it out and was zooming around, even on the grass!
Then I took Manny on the 4-wheeler. He “woohoo’d” the entire time. The guy has a need for speed!
Soon it was time for them to go, and we said our goodbyes until next time. I talked to my sister that evening, and told her how great it is to have a get-together where the kids are on the same level. It’s something you just don’t take for granted.
A day full of stops, starts, zig-zags, and full speeds ahead — all the while, remaining gloriously in sync.
Wil was busy packing his backpack. Then he walked up to me and told me what he was doing and walked out the door. I didn’t understand fully what he said. So I watched him walk down the lane of our back field. If he turns right, that means he’s going to the river. If he turns left, he’s collecting sticks. He turned right.
I threw on a coat and gloves, hopped on the 4-wheeler, and sped down the lane. I hopped off and started making my way from our property to the woods.
But, before I reached the woods, there sat Wil – cross legged in the grass. His backpack was open, the soccer ball he packed had rolled out. In front of him was a spiral notebook. He held a pen in his hand and had written one word: Ashley.
“Hi Wil.”
“Hi Mom.”
“Whatcha doing?”
“Mom, look.” He started writing.
“Ashley summer? Yes, we’ll see Ashley in the summer.” He nodded and continued writing.
“Swimming with Lila? Yes, you’ll have fun swimming with Lila.” He nodded then wrote again.
“Eating? I know you love to eat!” He laughed and wrote again.
“With Mom and Dad. Yes, Wil, that’s right.”
“Mom, look.” And he wrote “I love you.”
“I love you, too, Wil. Very much. I’m also very proud of you.”
'WIL'ingness = Willing to Embrace Extra in Life 