How My Son Taught Me About Joy With a Piece of Bread

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I have a son with autism. Most days I forget. He’s just my sweet boy, and he’s so delightfully fun and tender that I completely forget there’s anything different about him. Then there are the days when every single thing is a hard fought battle — days when I’m ready for bed at 11 a.m., days when I simply don’t know how to parent him. Yet, like Emily Colson says, “God doesn’t give all the autistic children to parents who are special-needs teachers; sometimes he gives them to the rest of us.”

Why? Why do mothers like me get children like Mareto? I don’t say that in a whiny tone… I say it with awe and wonder. How did God look down on me and find me worthy of a son like him? I don’t know the answer to that, but I do know that Mareto is a gift — a rare and precious gift for our family. Mareto gives us things we’d never have without him, and he teaches me about the important things in life.

One of the most important lessons Mareto has taught us is joy. He’s taught us to experience true and abundant joy in the little things. Like the time John, Mareto and I were sitting in Carabas for dinner. John and I were talking and eating the amazing bread that comes complimentary to every table. We gave Mareto a piece to play with so he would be occupied for a few minutes. He was poking holes in it and tearing bits off to feed us and occasionally throwing some on the floor. He was being quiet so we just let him have his fun. Then all of a sudden I glanced over to see him take a bite and not immediately spit it out. As I watched, he worked the bread around in his mouth, swallowed it and then took another bite. My eyes welled up with tears, and I felt the golfball-sized lump in my throat. I looked up at John to see tears in his eyes as he watched his son eat bread. For the very first time. Tears of joy. We looked at each other and laughed as we wiped our cheeks dry. Who would have thought I could experience so much joy over a 2-year-old taking bites of bread? Oh, but we did. We giggled and smiled our way through that whole dinner. Joy is contagious, and Mareto had a blast through dinner as well.

Then there was the day I casually opened up Mareto’s sensory toys bin. Usually he plays with the different textured balls or the cars that make different noises. This day he took the rubber textured blocks out one by one. I watched as he placed the first block on the coffee table, leaned over and grabbed another block and placed it on top of the other. I watched him do this four times until he had a little tower of blocks. I was almost breathless while he was working, but when he finished and looked up at me, I smiled bigger than I knew I could, cheered his name and clapped my hands. His mouth spread into a wide grin, and he knocked the blocks down to do it all over again. I wiped the tears from my cheeks and prepared to cheer him on as long as he wanted to stack blocks. The joy in that moment was spilling all over the house. To an onlooker this might seem odd and a little deranged. But it has been months of us trying to show Mareto how to stack blocks… and then all of a sudden he just does it like he’s been stacking blocks forever. Joy.

Mareto has taught me how to have overwhelming joy in life’s littlest things. Without him I would take so many things for granted. All mothers get teary and joyful when their baby says their first word. But how many mothers get to experience that same level of joy over a year later when a toddler finally utters his fifth word? Every day with my family is a blessing and cause for celebration. But how many of us wake up each  morning so happy to see each other that we literally giggle with joy? Not many… but Mareto does. When his sister, Arsema wakes up and Mareto realizes this, he lets out the sweetest giggle and kisses her, then hands her a toy.

Mareto can teach us all about how to really enjoy life… even the littlest moments.

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This post originally appeared on LaurenCasper.com.

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Captain America Surprises His Biggest Fan in the Hospital

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Kenny Botting, 9, is undergoing treatment for a brain tumor at Massachusetts General Hospital in Boston, CBS News reported. On Monday, Kenny got a surprise from his favorite superhero.

Chris Evans, the 33-year-old actor known for playing Captain America onscreen, stopped by to visit Kenny. Evans, who’s from nearby Sudbury, Massachusetts, hung out, took pictures and signed autographs for his little fan.

It’s their strength that gives me strength,” Evans told CBS. “No matter what hurdles are in my life it’s nothing compared to what these families go through, so any way I can bring a smile it’s worth it.”

Watch Kenny meet his idol in the video below: 

 

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This Illustration Used To Make Me Break Down. Not Anymore.

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unnamed (67) The first letter I opened after returning home from three weeks in the hospital was from the Cystic Fibrosis Foundation, asking for the continued support of the organization. In the envelope was an illustrated picture of a little girl holding a bouquet of flowers. Sixty-five roses.

“Sixty-five roses” is what children call the terminal illness because “cystic fibrosis” is too difficult to say.

The little girl on the card looked like how I imagine my baby would at this age — big curls, storybook features, inquisitive eyes. It was just an illustration. Not a real child. I hadn’t cried since we were first admitted to the hospital. But something about this cheesy cartoon child gave me permission to fall apart.

At 4 months old, my daughter, Adelaide, weighed less than eight pounds, and her skin was the color of a child in a Victorian portrait. Everyone told us how beautiful she was — a perfect porcelain doll.

As it turned out, that porcelain hue was severe anemia. Her blood work was off the charts abnormal. Something was terribly wrong.

Our first pediatrician assumed I wasn’t feeding her enough. He was of the blame-the-mother philosophy. I explained she was nursing all day. The problem was not with supply. It was all going in, but nothing stayed in. It reminded me of that silly children’s song, “There’s a hole in the bucket, dear Liza, dear Liza / There’s a hole in the bucket, dear Liza, a hole.”

Nothing remained in her body long enough to actually absorb. A hole in the bucket. Dear Liza, a hole.

We left our blame-the-mom doc and took Adelaide to a pediatrician who was known to be the best diagnostician in Santa Monica, California. He took one look at Addie and cancelled all of his afternoon appointments. No blame, no brush off — a real doctor.

He sent us upstairs to a lactation consultant, who after two seconds of hearing my baby suckle said, “A blind person could see that baby is getting enough to eat.”

They took more blood, urine, stool. They poked and prodded and still weren’t sure why she was failing to thrive. We were referred to a gastroenterologist. “But before you go,” the doctor said, “Let’s rule out Cystic Fibrosis. It’s probably not that, but let’s rule out the bad stuff first.”

He made an appointment for us. This was suddenly real. There was bad stuff we were ruling out.

The second I got home I hopped on the internet and looked up the disease they thought my daughter probably didn’t have. Cystic Fibrosis. Isn’t that the foundation that sends me monthly letters with sad stories of children dying? I’d even seen a Movie of the Week in the 1980’s about a little girl whose parents had to hold her upside down and beat her vigorously on the back to dislodge the mucous and blood from her lungs. Her father was the famed sports writer, Frank Deford, and his daughter died when she was only 9. It was one of those conditions where you thank God you don’t have it or know anyone else who does.

But this was the worse-case scenario. The doctor didn’t appear concerned. We were just ruling it out. Just crossing it off our list of “awful things.”

Maybe she had an allergy or blockage — some correctable disorder where, at worst, she may have to take a pill every day or have minor surgery or a special diet. It wasn’t going to be this – – this disease that’s so horrible, the children who have it can’t even call it by its real name.

When I scrolled down to “symptoms,” the breath left my body. Salty skin, failure to thrive, anemia. They were describing my baby. My sweet, napping, salty baby, who had no idea her mother’s heart was being ripped from her body. The median age of survival was 37, but most didn’t live to adulthood.

The doctor didn’t think it was likely, but I knew this was it. This 80’s Movie of the Week terminal illness with a name so ugly they have to cover it with flowers.

A sweat test confirmed it. Adelaide had Sixty Five Roses.

unnamed (66) My daughter turned 9 a few days ago. With respiratory therapy, a bazillion meds and anal retentive parenting, she’s thriving. She’s a swimmer, a surfer and a Girl Scout. That’s not to say Cystic Fibrosis is a bed of roses. Her treatments steal hours out of her day, she has chronic stomach aches and we deal with the real fear that this is still a fatal illness. She’s been poked and prodded and has had more procedures than my 96-year-old grandmother. But she’s here. And she’s funny and so full of life that people do a double take when I tell them she has CF.

When I was 18, I began making donations to the Cystic Fibrosis Foundation, ten years before my daughter was born. And on the day she was released from the hospital, when I couldn’t believe we were coming home to this life, I received a “thank you” from the foundation I had no idea would one day become my family.

Today in an antique store I found an embroidered picture of the little girl — the one with the roses, curly hair and inquisitive eyes. But this time I didn’t break down. After nine years of living life, rather than a diagnosis, I saw a brave little girl looking deep into a bouquet, searching for beauty in a word that’s still too difficult to say.

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When My Son Says He Wishes He Has Down Syndrome Like His Brother

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There’s so much I don’t know about everything.

Each year I learn a little more as I go — about life generally, about who I am, about my children, about living with Down syndrome. I can navigate pretty well through not knowing everything, but there’s something I haven’t figured out yet. When my youngest typical child looks at his older brother with Down syndrome and says he wants to have his life, I’m stumped. How do I respond to that?

My youngest is 10 years old, and for him, the longterm is the upcoming weekend. Trying to explain some of the longterm implications for Davis, who has Down syndrome, doesn’t work.  And I walk the fine line of making Davis’s life plan sound something less than wonderful, as I hope it will be.  I know Carter wishes he carried fewer responsibilities and less work; he envies when he thinks about Davis. It still breaks my heart to hear him wish he has Down syndrome. I’ve certainly experienced the unique joys that come to us as a family with a child with special needs, but there’s never a day I don’t also see a long line of doors that are closed to Davis because of his diagnosis. When I think about Carter, those same doors seem to be wide open.

As shining as all of these wonderful moments we write about are, there’s also the extra weight that we carry on the journey. In our family, this confusion of Carter not embracing all of his possibilities contributes to that weight.

But sometimes I also wonder if Carter is on to something. Do I lack an answer for Carter because there’s some truth to what he says? That a simpler life, free of the demands and worries for the most part, is something to be envied? Maybe I can use that line of thought to inspire me to simplify in this new year. If simplicity is part of what is to be envied, how can I bring that about more in my own life across these next 12 months? So, if I do that, add this to the long list of lessons I’ve learned from my children.

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If I Could Go Back to the Day I Heard He Was Developmentally Delayed, I’d Remind Myself of This

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He smiles. Every day.

If I could go back to the day I heard, “your son is developmentally delayed; he may have autism,” I would tell myself that he smiles… every day. He’s happy. He’s so smart, and he loves. He may be delayed, but he’s progressing. I would tell myself all the positive things he’s doing and that he’s going to do. I would tell myself to try and not stress because in the end, it makes it so much worse. I’d tell myself it could be worse. You’ve got this. You’ve already done this. You can do this.

You see, my son just had his 3rd birthday. He’s seen a pediatric special needs team: occupational therapist, physical therapist, speech therapist, psychologist, ears nose and throat specialist, audiologist, pediatrician, neurologist and geneticist. He’s had an EKG, sweat tests, genetic testing and he’s on a waiting list for an MRI. He didn’t walk until he was 2, and he often struggles to keep his balance or run. He’s just learning to talk.

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But the part that matters is he smiles, laughs and loves — every day.  He looks me in the eye and says “Wu you” for “love you.” He doesn’t do things quite as fast as his peers, but with lots of help, he’s doing better. He knows he’s loved, and we’ve taught him to love back. That’s all I need. They say my son is special and nice. They have no idea just how true that is.

I know as he grows, things are going to be hard for him and for us. I cannot see what’s in store for him, but I know he’ll be taken care of. I won’t let the unknown hold us back.

Recently my son was having a bad morning, and going into daycare was looking like it was going to be awful. The tears and the clinging was starting. All of a sudden a little friend of his, who could see him crying, came over and held out his hand. That was all Ethan needed. A small gesture by a sweet 2-year-old boy. Off he went happy as can be. Made my morning.

I quit asking why I was given all this, and I’ve accepted that my son has made me worthy of looking after him. Nobody’s perfect. That’s the bottom line. Everyone has their struggles.

This whole journey with Ethan, and with my oldest son, Jack, has reminded me that this life was never ours to plan from the start. Everything is going to be OK. Because I have him, and he has me. I am his momma; my life is dedicated to making sure he thrives. My 3-year-old child is a gift; he’s beautiful, happy, full of life and fun to be around. And he smiles. Every day. That’s all I need to remind myself.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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What Horses Taught Me About My Disability

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I grew up in a stable home with loving parents.

The one thing they couldn’t love away is my cerebral palsy, which mostly affects my fine motor skills, coordination, balance and movement. Failure has been a part of my life since I was a child. I had to go to therapy to learn how to skip, run and even put my hair in a ponytail. Life became about rising up from failure, adapting and getting back on the horse (no pun intended). I became resilient to obstacles in front of me even though I severely lacked the confidence that I exuded. I always needed help to do simple things that, in my mind, any “normal” person could do with ease. As I grew older and started to babysit, I came to the point of being fearful of being a mother. I can never hold a baby and feed them. What if my baby needs something and I can’t physically help them? What if I hurt or drop my baby? That fear turned into acceptance that I would never be a mother because I physically couldn’t. That was one obstacle I thought I couldn’t overcome. That fear has stayed with me until a few weeks ago.

I met Rebecca in early October 2014 when she started coming to our church’s 20’s group. She immediately introduced me to Stable Moments, a program that helps foster and adopted children heal and build dependable relationships through horses. I’d always loved horses and had done a good amount of riding and hippotherapy (therapy for special needs children on horses), so I wanted to know more. But, like most 23-year-olds, I had a nine-to-five job that didn’t allow much time for going to the barn for hours on end. I thought it would stay a distant image that would never mature into more.

My life turned upside down when I lost my job in October. Did they downsize? No. It was my fault I lost my job. I was now a failure. I was a young woman with cerebral palsy, fearful of her future, unable to adapt or “get back on the horse.”

I began to believe all the lies that I was a terrible person who wouldn’t find another job. At our 20’s Halloween party, Rebecca casually mentioned that if I had time I should come to the barn to ride and learn more about Stable Moments.

The first day I came, Rebecca had to do everything for me. I felt so unstable on Jesse (the horse) that I began to feel like a failure again. I felt like an utter fool when Rebecca trotted and I had to watch. I couldn’t trot, and that saddened me to the point where I cried all the way home. I was so frustrated that I was unemployed, that my cerebral palsy got in the way of everything, and that I needed help with everything.

I loved the barn, the horses and Rebecca, so I made Tuesday my day to go to the barn and have a small respite from life. At the barn I didn’t have to think about the next interview, or the company that had rejected me, or the other company that never responded back. All I had to focus on was riding, the smell of the horses and the feeling of purpose I had with Jesse. As I kept going, guess what happened? I got better. I remember the day when I felt like I was ready to trot. I was scared. What if I fell? That would be embarrassing, and it would hurt. I decided to try and I was able to trot and post. I was elated that day and texted Rebecca, “I feel so confident in myself!” This got me thinking, if I did more than I ever thought I could with riding, couldn’t I do the same with motherhood? What the riding had instilled in me was confidence and strength, both mentally and physically, in myself. I knew where I came from — being able to do nothing to being able to do everything. I also learned it’s OK to take it slow; the first day I wanted to do everything because I thought I was a failure if I didn’t. Now I know that it’s the journey that makes me who I am. If I never went through the journey I would never be as strong or as able. It takes time to become confident and trust my abilities and myself.

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I can now say happily that I’m employed but am building time to ride and to be a volunteer for Stable Moments. This is a time that I will always cherish, but I also look forward to my first day of work. My work is a blessing in many ways. Financially, it’s afforded me to support a Stable Moments horse for a year, so the children in the program can hopefully learn what I’ve learned about the journey. Stable Moments has truly changed my life in a way I could never imagine.

This post originally appeared on StableMoments.com.

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