entrance of wal-mart

To the Only Person Who Didn't Leave the Walmart Bathroom When My Son Needed Help

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When your child with special needs is little and cute, people can be sympathetic. But when he’s bigger and still getting sick over and over, well, you try not to bother people. You just smile and pretend everything’s fine. Inside, I often felt alone. 

My younger son is diagnosed with Down syndrome and autism. He also had a lot of digestive problems. I made sure he went to the toilet every two hours. Most days we were lucky. One day, our luck ran out. My nonverbal teenage son and I were standing in a long check-out line at Walmart when he needed to use the bathroom immediately. He was 14 at the time.  

I parked my cart to one side and asked a cashier to watch it for me. I walked my son to the women’s restroom, about 10 feet away. He was cramping and in pain. I had to get my son on the bathroom as quickly as I could. Fortunately, the handicapped stall was available. Women and girls wrinkled up their noses and moved away from us. Soon the restroom was empty. 

Suddenly, I realized my diaper bag was in the car, about a quarter-mile away. I made frequent trips back and forth to the sinks, wetting paper towels, adding a dash of soap. Most of his clothes were ruined. He couldn’t wear them. I couldn’t leave him alone while I went out to the car, and I didn’t have anyone to watch my son. What could I do, wander around Walmart asking strangers to help? I couldn’t leave my son alone in the restroom, even for a minute. Staff might call in Child Protective Services, a real concern for any single parent of a child with special needs. I felt so helpless. We were stuck in the restroom. 

I couldn’t help it; I started crying. “OK, God, I really need a friend right now. Please send me someone who cares.” I managed to pull myself together and soothe my son. He needed me to smile and tell him we’d be just fine. By now, I knew how easily he picked up on my emotions. Mommy always made things better, but just then, Mommy didn’t have a clue.

One minute later, there was a knock on the stall door. A kind, middle-aged woman smiled at me. “Honey, you look like you need a friend. What can I do?”

I breathed a sigh of relief, thanking God for such a quick answer to my prayer. I hadn’t prayed for help; I’d prayed for a friend, and there she was. I found myself smiling back at her.  

“You’re an angel,” I told her. The car was too far away, I thought. I handed this woman $20 and asked her if she would pick up a pair of pajama bottoms for my son. She was back, ten minutes later, with the pajamas and a pair of socks. I hadn’t thought to ask for socks. 

I thanked her over and over. She didn’t have to stop and help. Everyone else just left, seeing a mom in trouble, but this woman saw someone who needed her. There aren’t enough words for such kindness. I helped my son get dressed in his nice, clean clothes. Soon, we were able to complete our purchases and go home, just like everyone else.

I was mentally thanking God all the way home. His message was clear: “You’re not alone.”

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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Why an Ordinary Question From a Stranger in the Park Meant the World to Me

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I’m sure you have friends, family, someone in your life who asks how you are, how your kids are, what kinds of things you all have been up to since the last time you saw each other. (At least I hope you do!) This is the story of a mom I met today. She has a little girl with Down syndrome, like my son.

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I took the boys to the playground, our usual haunt on an awesomely spring-like day, and as my oldest son ran off to the zip line, I pushed Jeremy over to a bench to give him some lunch and let him play in the sun. (Really I was hoping that I could give both boys lunch at the park and then they would fall asleep on the way home and I could have a few hours of *silence*!). As I sat on the bench and watched Jeremy throw playground mulch everywhere, I saw a mom with a little girl over by the zip line. I couldn’t see the little girl’s face, but from her gait to the way she bent over, every bone in me screamed, “That little girl has Down syndrome!” I just knew it, like I just know that first latte in the morning is going to calm me down, like I just know how a Cadbury mini egg tastes when it’s not even close to Easter yet. It’s not that I identify individuals based on looks or abilities, but I do categorize how I’m going to respond to individuals based on commonalities I perceive us to have.

She came over to us (for the record I rarely approach anyone; I don’t know how some parents would respond) and introduced herself and her daughter (who by the way has the same name as my sister, which is not common at all!), and she asked about Jeremy. After the initial introductions of our kiddos she asked me, “How is he?”

Isn’t that such a loaded question? “How is he?” from any other person who doesn’t share that 47th chromosome in common with our family seems almost obligatory. And do you know why that is? Because I’ve found most people don’t understand all of the medical problems that can be associated with Down syndrome, so their question seems to require a basic answer like, “Oh, you know just being like any other pre-2-year-old… stubborn as hell, destructive too!”

But I think (and this is me, not based on fact or fiction) that parents of children with special needs, and in this case a fellow 47th chromie, ask this question because they get it. They get how hard it is. They get how scary it is. They get how much it sucks to go to the doctor week after week for weight checks. They get how hard it is to watch your child trying to learn and stumbling a lot and working harder than all the other 46 chromies are. They get the terms CAVC, VSD, ASD, G-tube, hypotonia, clubfoot, etc. They just get it. So you know when you’re asked “How is he?” you can answer freely, you can use as many acronyms to describe medical procedures as you want because they probably have experience with it. You can say, “We just can’t get his nutrition right,” “Even though he had a CAVC repair, he still has a VSD.” You can say these things and there is no need to explain what you mean, because they just know.

This post originally appeared on For the Love of Down Syndrome.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Young Man in the Parking Lot Showed My Daughter Immense Kindness

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It was an ordinary day in an ordinary week. Returning from the speech therapist with my then 1-year-old daughter, we stopped at a convenience store to pick up a few things. Just outside the store a gentleman in his early 30s walked over to us and asked if we’d like to buy a rose. He wore a sharp black suit, a bright white shirt and a red tie. He had Down syndrome.

I grinned and as gently as I could, I said “No, thank you.” He grinned back and walked off.

I watched him walk over to the next people… then the next… and next. He received mixed reactions, but his smile never left his face.

When we left the store I had a quick look-around but couldn’t find this gentleman. Only when we got into the car did I notice him walk up to two men standing a couple of cars away from us and ask for a cigarette. I don’t think I’ll ever forget their faces or their reaction of disgust that emanated from them because he dare to talk to them and ask for something of theirs. They walked off without too much of a confrontation, yet he remained smiling. I knew he had similar encounters.

He then turned and walked over to our car. I rolled down the window.

“Do you happen to have a cigarette?”

I quit smoking about a month earlier and this was the first day I regretted I did so.

I sank in my seat and muttered, “I’m sorry. I don’t smoke.”

He smiled, took one of the roses, looked at my daughter and said, “A rose for the lady.”

He handed me the rose and walked off.

My daughter, Rozie, also happens to have Down syndrome.

It took me a few minutes to gather myself. We drove home, singing as loud as we could all the way.

Rozie

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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To the Mother Who Chose Me to Adopt Her Baby With Down Syndrome

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When my husband, Scott, and I decided to adopt a baby with Down syndrome, I played and replayed scenarios in my mind. They ranged from what it would be like the first time we met our baby to what I would say should anyone dare question our decision or say something less than encouraging about my family. I kept thinking about all the joy, the excitement, the passion that I would have for this new calling in life. But somehow in the midst of it all, I never thought about the family that our baby would be coming from in order to get to us.

Suddenly my adoption daydreaming became a harsh reality when we found out a birth mom had chosen our family’s profile and was interested in speaking with me further. I was given her email address and simply told to write to her and introduce myself. No scenario in my mind or any real experience in my past for that matter could prepare me for this moment. What do you say to the person who might choose you to raise and love her child? How do you make contact without sounding desperate? Do you share personal stories or try to remain neutral?

I don’t even remember what I first said to her, but I managed to make contact. Then things got even harder. I was prepared to feel great about adoption because I would be “saving” a child from a bad situation. But as I got to know this stranger through her words on my computer screen, I realized I wasn’t saving anyone. This was an amazing woman who didn’t need me to be the hero. She was already being the hero by choosing what was best for her baby and not what was easiest for herself. I tried to be as honest as possible as we emailed back and forth, asking and answering questions and trying to be as polite as possible. Then I got the email.

Yes, we have chosen you and Scott, so please proceed with the social worker…

This small sentence that has forever changed my life, given me the gift of my son and inextricably linked my life to the life of this stranger. We set up a time to meet in person.

Scott and I walked into our adoption agency as my mental scenarios began again. “Oh, maybe she’ll say this… then I’ll say this…” “The social worker will probably usher us into a private room where we will see her…”  When we walked in the doors, there she was. Just sitting in the waiting room reading a magazine. She looked at me and smiled and said, “Bekah?” and I shook my head yes and we hugged. I felt my son against my belly through hers. And suddenly my adoption harsh reality moved into the realm of adoption pain. She was beautiful, had her life together, loved the Lord like we did and had chosen us. I felt guilty that this wonderful thing in our life was the cause of so much agony for someone else, someone real, standing and hugging me.

Our little William made his entrance into the world too early and very sick. Although he did have Down syndrome, none of his medical needs were centered around it. His kidneys and liver weren’t working properly. He needed a catheter, surgery, oxygen to stay alive. He had leukemia cells floating through his little body. We were talked through comfort care in the event that he wasn’t going to make it. In the midst of the first 24 hours with our sick baby, his mom called our room, still recovering herself, and asked me if she could come and see him. More pain… She shouldn’t have to ask. I don’t have the right to be taking this person from her. We said yes.

She came in a few hours later, stood with us over his bed and watched him breathe. After a while, she looked up at me and said,

He was a fighter, and I could feel him kicking so strongly inside of me. He will survive this…

More simple words that rocked my world. And again, from this person who I barely knew but who I could tell was also a fighter and stronger than anyone I’ve ever met. How was God using this person that was dealing with so much herself as my source of strength?

1513820_10105860070283994_2998608033836311516_n As the months went by and William got better and better, we sent photos to his birth mom. We even met a couple of times so she could see him. We eventually got to know each other a little better through emails, texts and then Facebook. Then, when Will hit 7 months old, our world was rocked again. He contracted RSV, and while he was in the hospital, he started having seizures. He was diagnosed with a rare seizure disorder that would slowly take away the abilities we’d worked so hard on in therapy. We watched as he stopped rolling over, stopped smiling, stopped moving his legs and then stopped holding up his own head. We went home to face our new normal only to rush back to the hospital a week later and find out that Will had a hole in his bladder and would need to use a catheter full-time.

I was heading home from the second hospital stay in three weeks and was updating William’s birth mom via text. I always try to sound positive and put together even now because I want her to feel like she made the right choice in giving her son to us. But she sent a text and asked how I was holding up. I answered with, “I’m so discouraged.” The response I got back, from the mother of my child, was…

It’s OK. God loves us all and He has chosen you to take care of William. He will not let you down…

… and there are no words for that emotion. I had gone from adoption being a daydream, to a harsh reality, to so much pain. Now what was it? Grace? Acceptance? Insanity? Peace…

Words from this amazing stranger. A mom like me who I love so, so much although I don’t really know her well. Small words that change the course of my life, give me hope, shape my future and strengthen me to take care of her baby, my baby, our baby.

Follow this journey on Bekah’s Adoption.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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To the Target Employee Who Treated My Son With Down Syndrome With Dignity

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Dear Target Employee,

As I walked past Target today on a mission through the mall with my three little ones in tow, thoughts flashed through my mind. Your employers have been in the news a lot lately with the announcement of the closing of all Target stores in Canada and the politics that have been dredged up as a result. Doing my best at multitasking — handing my children fishy crackers by the fistfuls, coaxing them to sit in the stroller while dashing in and out of stores — I thought of you. Not of you specifically, but of you, the Target employee. I wondered where you would go, what you would do for work, how this would affect your life, your family, your livelihood. I felt bad for your situation.

On my way back past your store, my oldest son took a detour from the path well-traveled, darting into your store and yelling “Ready… go!” at the top of his little lungs, as he pretended he was in a race against the fastest legs in town. And when I ran to turn him around and usher him out, he proceeded to have an epic meltdown. In the middle of your store. With everyone watching, staring, judging. Since he doesn’t have a large vocabulary, he was unable to use his words to explain to me where he was headed, but I knew. Your escalator was calling out to him, drawing him in with the memory of the thrill he’d experienced on its hallowed stairs just a couple of short days earlier.

I feel for my son. He often gets frustrated that he can’t express himself better. He doesn’t always understand my decisions. He knows what he wants, and he gets mad if it doesn’t come to fruition. Part of that is natural for a 3-year-old. Part of that is exacerbated because he has Down syndrome. It must be an incredibly difficult place to live. It’s also hard to have to deal with the fallout. Especially in public.

Enter… you.

You saw my situation. You looked at my other two children, sitting alone in the stroller, waiting for their mommy to restore order and security. You noticed the exhaustion on my face as I bent down to my child’s eye level and attempted to reason with him. You must have recognized that my son has a visible disability, one that would cause many to turn a blind eye or shy away from an already escalated scenario.

And yet you entered. You called out to my son. You walked over, bent down, talked to him and took him by the hand. You led him over to the checkout and let him scan the items just for fun. You diffused the situation for me. You distracted him, calmed him down and gave him back. You saw the situation for what it was — the temper tantrum of a 3-year-old who wanted his own way — and not for what is often read into similar situations — the misbehavior of a child because of a disability.

And most of all, you treated him with dignity.

From the bottom of my heart, thank you. Thank you for superseding your own situation to step into mine.

You will never know how much your gesture meant.

Sincerely,

The frazzled woman with the runaway kiddo.

Karyn and her three children

This post originally appeared on Our Epic Story.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When My 2-Year-Old With Down Syndrome Met a Grown Up Like Him at the Hair Salon

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I walked into the hair salon with Bobby, my 2-year-old with Down syndrome, slung over my left hip. He was small for his age, but my back was starting to feel the toll of carrying him everywhere.  My best guess was that he still had a year to go before he’d walk. Still, as much as my back ached, Bobby hated the stroller, and I hated him being unhappy, so over my hip he went.

“Be with you in a minute,” said the hairdresser closest to me. Both stylists were busy, but the customers were young men with already short hair. “Won’t take long,” I thought, estimating our wait.

Bobby squirmed in my arms, positioning himself so he faced me, where he could command my full attention. I made a silly face and blew gently on his bangs, making him giggle. My real attention was across the room, fixated on one of the customers. His reflection in the mirror revealed telltale almond-shaped eyes, a broad nose and a tongue that protruded slightly from the bottom lip. I guessed he was in his late teens. As I watched his reflection from across the room, he watched the reflection of the stylist cutting his hair. He was quiet, only occasionally filling his cheeks with air and then releasing them.  “Wonder what that’s about,” I thought.

Finally, our name was taken, and we had an official place in line. Bobby was going to follow the man with Down syndrome. We sat down next to a woman, who I guessed was mother to this same young man.   Her face was buried in a magazine, and she scarcely seemed conscious of our presence. Bobby shifted to my lap and immediately reached up to pull my hair. “Gentle,” I reminded, and he released, instead awkwardly and endearingly patting my nose and leaving tiny fingerprints across my glasses.

Soon bored with being gentle, he grabbed the collar of my shirt and, with a smile, jerked himself up and down for a few beats, in an invitation for me to play any number of games that involved him being bounced on my knee and ultimately thrown into the air. I acquiesced with a tame pony ride, still staring over Bobby’s head at the man with Down syndrome. Bobby didn’t care. He squealed in delight.

The squealing got the attention of the mother. From the corner of my eye I saw her glance up and smile.  Pause. Then she glanced up again, this time with more purpose. And her gaze rested on my son just as mine had stopped with her boy.  “How old is he?” she asked.

“Almost 2.  Yours?”

“He’s 29,” then noting my look of surprise that such a young looking man was nearly 30, she nodded towards Bobby. “It’s one of the advantages.”

Bobby gave her his best smile, happy now that two people were giving him their full attention. “How’s he doing?” my new friend asked.

“Good now. He has a heart defect. And he’s on a feeding tube. But the last few months have been quiet.”

“That’s how it went for us. Is he in therapy?”

I rattled off the details, using the shorthand I knew she would understand. She didn’t cringe at the two heart surgeries, the multiple hospitalizations. She wasn’t being callous; she knew this hard route was taken by many children in the Down syndrome community. The important thing was that Bobby was doing fine now.

Besides, I didn’t want to talk about Bobby. I wanted to know about this woman’s son, wanted to learn from her experiences. Bobby’s hospitalizations had forced me to live life day-by-day, not planning for the future. The idea of Bobby as an adult felt like a leap off a cliff into a dark and dangerous unknown – Would I be taking care of him the rest of my life?

I faced Bobby outward and bounced him on my knee as I peppered the mother with questions. Her son worked in a bakery and at Loyola University setting up classrooms. He lived in a group home with five other men and spent his time following sports; he was a big fan of the Chicago Bulls and Cubs. He was an easy going sort who had caused her less trouble than her two typical sons, even though he was unreliable about calling home when his social calendar was full. I memorized every word. I didn’t need this mother’s empathy for what Bobby had already been through, but I needed her hope for his future. She knew, and she willingly obliged, painting me a picture of her son’s good life.

Our conversation ended as the woman’s son walked our way. He didn’t feel the need to watch Bobby’s reflection in a mirror or glance at him sideways to check for the signs of Down syndrome.  He stared and smiled at him the entire way across the room. His face was youthful, but he carried himself like a man — chin up, shoulders back, confident strides. The mother’s words had shored my hope for Bobby’s future, but this walk was even more encouraging. So often I’d heard of adults with Down syndrome having the “mentality of a 6-year-old.” But the person walking towards me was not a 6-year-old in a grown up’s body – he was a 30-year-old man with a broad smile and a twinkle in his eye.

He stopped to shake Bobby’s hand and acknowledge their kinship. “I used to be him, a long time ago,” he said. Then, taking full advantage of my attention, paused slightly, “So, what do you think? Who’s more adorable, me or him?”

I was tongue-tied for a moment, and he smiled a mischievous smile. “Well,” I said, “let me just say that I hope he grows up to be as handsome as you.” We shared a laugh like old friends, and then Bobby and I went to take our turn in the stylist’s chair, he and I both happy to be following in the young man’s footsteps.

Family
Our family.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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