It Takes a Special Person [Guest Post by Mary Evelyn Smith]

The amazing Mary Evelyn Smith is a dear friend and fellow blogger over at What Do You Do, Dear?, where she writes-with plenty of candor, humor, and sass- about the joys and challenges of being a teacher, a wife, and a mom. We share a lot in common: our faith, many of our perspectives on life and people, and a devout appreciation for Arrested Development.  

Her family is one of my favorites, and her son, the Sim-Monster, is a sparkly fireball of Awesome.

You can read the blog here, like her on Facebook here, and Tweet her here.

It’s an honor to have her grace my corner of the Blogoverse! 

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In 2012 when my son was born with spina bifida, a birth defect of the spine, I joined the ranks of millions of people worldwide who love someone with a disability.  I’ve learned a lot in the year since—how to find the best wheelchair accessible parks, how to schedule multiple therapists, how to be a mom.  But more than that, I learned that I am “a special kind of person.”  At least that’s what people told me.

Why?  Because it takes a special kind of person to raise a child like my son.

I’ll be honest and say that at first, I really liked being a special kind of person.  Who wouldn’t?  It was nice.  It meant I was doing something good, something important and noble.  I am, after all, raising a child who has a disability.

But after a few months it didn’t sit so well anymore.  Being called a “special kind of person” began to make me uncomfortable.  And then I saw a photo on Facebook that made me realize why.  It was a picture of a teenage girl dressed for prom and standing beside her date—a boy with Down Syndrome.  The picture was charming, but it’s the comments that got to me:

“Honorable move, looks like she made his day!”

Someone at my school did the same this year. It made me proud of her because she’s absolutely beautiful and could’ve had anyone she wanted.”

 “That is very sweet of her…”

Turns out, she was a special kind of person just like me.  But it felt hurtful somehow.  I started wondering, “How would I feel if the boy in this photo was my son?”   Sixteen years from now, when my son goes to prom, will people applaud his date? Will they see her as a martyr? As a saint?

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Just what are we saying about people with disabilities when we glorify those who love and care for them?

Think of it this way:  I am married, I have a mother and father who love me, I am surrounded by friends but what if, time and again, I overheard snippets of conversations—words that praised them for the love and care they’ve given me?  Imagine whispers to my mother: “It takes a special kind of person to raise a kid like that.”  Or to my husband “You are such an inspiration— I don’t know if I could be with someone like her.”  These comments would say so much about my worth— my value.

Believe me, I am not diminishing my work as a mother.  I am not ignoring the extra time and energy it takes to carry a wheelchair up a flight of stairs.  I am not pretending that my son is just like everyone else.  But when we glorify his friends, or his mother, or his one-day prom date, we imply that he is less-than. We imply that those with disabilities are not equally lovable—that it takes someone “special” to muster up this kind of affection.  It seems we reveal our innermost bias—at least I think I did.

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The thing is, all love should be praised and all sacrifice too.  Loving someone is hard work—whether they’re a football player, a musician, or a wheelchair tennis star.  So call me hard working or call me a wonderful mother.  But if you call me a special kind of person I’ll probably nod and smile because I know a secret: if you knew my son, you’d love him too.

So, I guess, you’re a special kind of person—just like me.

Dear Simeon: Enjoy your new wheels! [a guest post for What Do You Do, Dear?]

This is a guest post for my friend Mary Evelyn’s amazing blog, What Do You Do, Dear?

Her son, one of my favorite humans, just got his first wheelchair. I wanted to write Sim a letter about what being in a wheelchair is like, so he and his mom can read it together later on when he starts to get older and ask questions.

Enjoy! And read the rest of her blog instantly.

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Hi, Simeon!

I’m Beth. I’m friends with your Mom and Dad. I go to Church with your Uncle Joel and Aunt Sarah. I made you a video where I sang Happy Birthday to you when you turned one. I bet you could tell that I’m very, very silly. Most people figure it out right away.

Your Mom wrote a blog post about you getting your first wheelchair the other day. I watched that video she made, and it looks like you already know just what to do. Awesome! 

It is fun to use your chair to learn ways to do things your friends do that work for you. You want to zoom around the playground? You can. You want to twirl around in a circle for the heck of it? You can. If there’s something you want to do, there’s a way to figure out how you can do it. 

As a bigger kid who uses a wheelchair, too, I can tell you: having a wheelchair can be great. It helps you get around more easily by yourself. You can keep up better with your friends who are walking, running, or playing with you; especially if they are pushing your chair during playtime. You will meet a lot of great friends to have fun with. I have no doubt. 

But there are going to be some people you meet that won’t understand wheelchairs or what it is like to use one. They won’t understand that you have your own way of doing things that works for you. They might say that there is something wrong with you, that you’re sick, or that you can’t do something they can do. They might tease you. They might laugh at you. They might look at you funny. They might feel sorry for you. They might call you names. They will make choices that hurt your feelings. 

When I meet people who act like this, I am angry. I’m sad. If they just got to know me a little, they wouldn’t choose to say and do things like that! It’s okay to be upset when people hurt your feelings. Just do your best to remember the good friends and helpers all around you who love you very much. 

You may meet some other friends with wheelchairs, some who use crutches or a walker, some who have service dogs to help them with seeing or hearing or reaching things. Some of your friends might not have wheelchairs or walkers or crutches or service dogs, but there are things they will need help with, too.

We can all help each other, we can all be friends with each other. We can all learn from each other. There are two things we should always remember to say, “Thanks for helping me!” and “What can I do to help you?” Helping each other makes us all better friends in the long run. 

Being in a wheelchair does make us different from a lot of our friends. Feeling like you’re different can be scary. But it is nothing to be scared of or sad about. God makes each one of us special. There is only one me, there is only one you. All of our friends are special, too. We are all different from one another. And that’s just it. Because no two of us are alike, everyone is fabulous, everyone is wonderful; everyone is fantastic. 

So, keep your chin up, Sim. Keep on rolling. Keep on being fabulous, fantastic you, no matter what. 

Zoom zoom. 

With Lots of Love, 
Your friend, 
Beth

first dibs

“It may be that He has the eternal appetite of infancy. For we have sinned and grown old. And our Father is younger than we.”

– G.K. Chesterton

When you spend the entirety of your “public life” seated, there are few people who take the time to make sure they do what it takes to look you in the eye. I spend most of my conversations looking up, squinting, or wishing I had a more swan-like neck.

art i found online by a kid named taylor. check out all those sweet colors!

Unlike their adult counterparts, children have little trouble approaching me and engaging in conversation; this is partly because many of them look me right in the eye and find me reachable, in the literal sense.

Time and time again, I have been instructed by children. I wanted to share with you a few things I noticed tonight after meeting my friend Judah.

Judah and I are both Fable Cry fans. He was in front of me in line [I was ordering dessert, he was getting a side of bacon. Same thing, in my book].

Naturally, we struck up a conversation. After making introductions I asked how old he is. [He is seven: I didn’t volunteer my age. I know twenty-five is ancient to a child anyway, and I wanted to retain my credibility.] Next, I inquired “What is your favorite thing to do?”

“Hmm,” he said, his brow furrowed.

After a moment, he replied, “Be in plays.”

Judah told me that he had recently been in a play in which his character had 2 lines. He recited them for me, explaining their significance, and saying he hopes to have more lines the next time he is in a play.

He nodded knowingly when I shared from my experience with the theatre- the more you try, and the more plays you’re in, the more lines they’ll give you because they know you can do it- Judah seemed satisfied enough with this, and I thought the conversation was over.

Until he said, “I have second and third favorite things to do, too. Would you like to hear about those?”

“Yes, I would.” I said, as if I had nothing in the world better to do [because I truly didn’t].

He then told me about how much he enjoyed “making weapons out of different things” and “listening to audiobooks”, respectively.

After complimenting Judah on his Silly Band [see above], he offered me one: a guitar. And later, I gave him some bubbles. “For a trade” I insisted.

Wanting to make sure I was happy with my gift, Judah methodically removed his bazillion Silly Bands-one by one-laying them on the table before me, so I could make sure to have my pick. It wasn’t just about picking one. I was to choose the one I thought was the coolest. I had first dibs.

[He and his sister Miriam-age 4- weighed in on their favorites, which helped me to narrow things down a lot quicker.] The call between brontosaurus and guitar was too tough. So I got to have both.

I hope Judah doesn’t mind that I traded the guitar Silly Band for a ride back to my house. I kept the brontosaurus, though. It is my favorite dino, because it is friendly-as I told Judah-and does not like to eat the other dinosaurs.

I plan to keep the brontosaurus parked on my wrist, next to the faces of the Saints, to remind me of Judah, and his example.

Love toward our friends means giving of ourselves. And it means giving good gifts. At times, it means putting everything on the table for them to see. Life is a give and take. And so often I find that when I give from the heart, no matter how small my token, I so often receive more than I ever expected in return.

Case and point.

year one

For my Valentine’s Day post, I’d like to begin by telling you about my sweethearts.

i want to hold your hand.

Aida and Sophia, before coming home from the hospital, 2007

Those are my nieces Aida Elizabeth and Sophia Jane, shortly after greeting the world. In some ways, they haven’t changed much: they are still beautiful; still sweet; they still love each other instinctively. In some ways, though, the girls have changed quite a bit.

my valentines

Sophie and Aida, a few weeks ago, now age 3

They have gone from making little gurgly noises to chatting up a storm. They are no longer content to lay in a crib and sleep; they like to run and hop, swing and twirl. Each of the girls are starting to make her own choices; each of them has her own likes and dislikes: each one is taking hold of her own personality more and more by the day. And they are both growing fast, shooting skyward like little spring flowers, in what seems like no time at all.

Orthodox Iconography: Jesus Blessing the Children

Along with my mom and stepdad, tomorrow marks the one-year-anniversary of my becoming an Orthodox Christian. I have been giving a lot of thought over the past few days to this post, and discovered that my nieces offer the perfect allegory.

When it comes to my “experience” treading the path of Orthodoxy, I am only a year old. Let’s put that in human terms. How many theologically articulate infants do you know?

In most ways, I still know next-to-nothing about this way of expressing my faith. I cannot begin to explain to you the complexities of our philosophy, the layers of meanings behind each and every tradition and practice, the lessons that are meant to be taught us by the colors in the icons.  To this day, I have no idea how to correctly sing a single tone in the hymnody.

More than a few times over the past year, I have looked an inquisitive friend in the face and politely implied (s)he “will just have to come with me to church sometime” and that (s)he “may want to ask a priest” instead of me, when it comes to questions about the Faith.

But there are two sides to every coin. Unless it’s a trick coin. And the one in this metaphor isn’t.

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Russian “Tenderness” icon [the style where Jesus’ face touches Mary’s, my favorite

While I feel like I have a long way to go, I am profoundly grateful for how far myself and my family has come. Not unlike my nieces, who seem to look more like little girls and less like little babies every time I see them, I am blessed to have seen my faith and my perspective grow and develop into something entirely different than it was  a year ago [by Grace alone]!

 

It is not an easy task to completely redefine your faith. But it has been a labor of love, and I have so much to be thankful for in hindsight.

I am grateful for the sense of community in the Church, both earthly and heavenly. I am grateful that beauty is not only encouraged in our worship, but embraced, and somehow reveled in. I am thankful to learn prayers and hymns that have been celebrated across the centuries. I am grateful for how accessible and how mysterious being a Christian can be, in the same moment.

the Archangel Michael: I love this because he looks like he means business.

Because of how different the perspective can be from one expression of faith to the next,  the past year in some ways feels like a lifetime. When you are thrust into the unknown, you never know where you might end up, and just how far you may go.

The changes brought on by this year have felt intimidating, frightening, exhilarating, humbling, confusing, joyous. . .I can’t keep track. Just in thinking about what to write in this post, and processing the moments in the past few days of my life, I have run the emotional gamut.

But then I remember my nieces and their example. And I remember I do have a long way to go, but I have grown and will continue to do so.

In the meantime, all I can do is approach G*d with an honest and open heart, like the children before me who ran to Him for his blessing.

is that you, optimus prime?

If you are a person with a disability, [or a friend, significant other or family member of a person with a disability] you may have realized something over time. People can say some crazy things to each other. Many times, well meaning people have approached me-with a kind smile and outstretched hand-only to say some of the most bizarre things I have ever heard.

Whether it’s being told I am “so brave” by my hairstylist, or having people say they are “glad I am out doing things” like having dinner,  I am consistently amazed by the demeanor of the people who approach me. [Example: my friend being asked if my wheelchair was a bicycle by an intoxicated bystander in a bar bathroom]

What does THAT button do?

I alternate between being appalled, amused, and just kind of weirded out by these kinds of interactions. My peers in like circumstances often exchange similar stories with me: faith healings gone wrong, fielding awkward romance-related questions, and inquiries about how we sleep, to name a few.

But just when I think I’ve heard or seen it all, one bunch throws me for a loop. The approach kids take with disability is quite different from that of their adult counterparts.

Adults see THIS.

One day, I was shopping in Hillsboro Village, when I noticed a small girl near me. She was close enough to me that saying hello seemed proper, and I did so. She returned my greeting a bit shyly, but I could see her eyes moving over my power wheelchair with unmistakable curiosity.

“Want me to tell you what the buttons do?” I asked her.

She nodded. If she said “yes”, it was just above a whisper, and I didn’t hear her.

“Well,” I began, in my best trying-to-be-simultaneously-cool-and-instructional tone, “This one is for the headlights. This one is for the turn lights. This one is for the horn. This one makes the seat go up and down so I can reach things” and so on. With each explanation, I pressed the corresponding button.

I left out this particularly boring and complicated button. This left her free to ask a question. A question that will live on in legend, myth, and internet publishing:

“Does that one make it transform?”

what a KID sees. i think the winner is clear.

What I wanted to say: Absolutely it does.

What I actually said*: No, it does not. But I wish it did. That would be awesome.

{*Although I do not regret telling this little girl the truth in the strict sense, if I could do it over again, the child in me would probably rephrase. I would tell her it’s best for me not to Transform in public, so as not to cause a scene, or make an unnecessary mess. I’m sure she would have been very obliging in this case.]

Short story long, I don’t have to connect too many dots for you guys on this one. That little girl ruled. She saw difference as something interesting and intriguing at its heart- even if it was admittedly a bit intimidating to begin with.

I do not mind being asked questions; in fact, I find direct questions to be refreshing. Honest inquiry [in the spirit of getting-to-know rather than ‘fixing’, ‘healing’, or ‘diagnosing] is the best way to learn about anyone and the challenges they face. This remains true whether they are similar to you or not.

Many people tread lightly, and I can admire tact. But I appreciate children for their simplicity, their directness, and their ability to re-imagine human difference as what is meant to be: an awe-inspiring glimpse of the supernatural.

Here’s looking at you, kid.

i could have met you in the sandbox

I had a somewhat unsettling realization today during a dinner with my family: this year I will be turning twenty-five. 25. XXV. This in itself is not particularly startling. Birthdays are something that tend to happen every year for most people, or so they hope.

And I love birthdays. Anyone’s birthday. I am one of those people who chimes in on “Happy Birthday” when it is being sung to strangers in bars and restaurants. I can’t help it- I just get caught up in  all the happy. A birthday is a time to celebrate life and friendship with gifts and large, elaborate pastries! Every year, my birthday is a delight- every year I look forward to it. And this year is no exception. With one exception.

Twenty-five. That’s it. Quarter of a Century. There’s nothing I can do about it.

Beth Hopkins circa 1991 would almost certainly be appalled.

When you are a small child, aging is a wonderful thing. It means you can ride real bikes, eat solid food, and any number of other exciting things. Hitting the double digits is thrilling. Because you’ll be a teenager soon, and the world will be your oyster. You will be cool, and by gosh, you will know everything there is to know. Certainly more than your parents have ever known.

Age, for kids, means bragging rights and seniority- to a point.

There are little kids. There are big kids. And there are grown-ups. In a child’s mind, grown-ups cannot be little or young or kids. They are old. Although there is no definitive benchmark for “old” in Kid-dom, but I would venture to say that it begins to happen at twenty. And by twenty five, there’s no turning back.

Telling a small child your age- if it is anything larger than twenty- causes them to look at you with wonder, disbelief, and perhaps a dash of outright. “Twenty Fiiiive?” they’ll be saying to me soon, with expressions of awe and pity, “Whoa”.

I know how you feel, kids. Trust me. My young self would have expected me to have everything figured out by now: a job, married, my own house, maybe even some kids. Grown-ups may be old, but they are enviable to children in this: a grown up is Ruler of his or her Own Realm. Grown-ups can stay awake as late as they want. They can have another scoop of ice cream. They can skip breakfast. They live in a mystical and powerful reality where what they say goes. And, in exchange, they have to do boring things like work and be stuck in traffic.

Although I have the night owl thing down, and an increased tolerance for dairy treats, I doubt I have earned my full bill of adult rights. Bill paying, regular dentist appointments, and understanding insurance benefits are among the many things about being an adult that remain illusive to me. Part of me knows I have learned and grown through experience- but most of myself remains convinced that I know less now than I ever have. If grown ups had recess, they would pick me last for kickball.

In this, I have probably disappointed my younger self. But she would be happy to know I haven’t forgotten her. The daunting climb to adulthood is a trying one. It is a long, arduous struggle that is not achieved simply by having enough birthdays. And the irony is, it seems to me, that it would be impossible to live through adulthood without retaining some elements of the childlike.

Life would be ugly without a sense of wonder. It would be boring without imagination. It would be agony without fun. Children understand these things. And I hope I have learned enough from mini-me to become someone she’d be proud to know.

gratitude adjustment

I haven’t written since Tuesday night- pretty unbelievable for someone who overwhelms you with Tweets and status updates every time she writes a word, I know. But I have been a busy bee, people! Because things are all out of order, I am going to start with the moral(s) of the story, and toss in some characters and a plot when you least expect it.

The moral(s) of the story is/are:

We should always be looking for the lessons life is trying to teach us because they will bring with them blessings; there will always be reminders of things to be grateful for.

For this helpful reminder, I would like to thank the following:

A Child: This morning, after a period of prayer, study, and inquiry, my family and I were received into the Orthodox Church and were able to take our first communion there. This afternoon, we participated in a Forgiveness Vespers (prayer service). After the regular prayers are finished, the clergy and their wives begin asking one another for forgiveness and extending forgiveness to one another, in turn. Then the congregation does so with the clergy, and then with one another. The process goes on until everyone present has asked for, and received, forgiveness from everyone else. It is truly an experience! The most moving part of it is that the littlest children participate, embracing you and asking for, then extending, forgiveness! Not a dry eye in the house after that!

I realized that, great and small, we all need each other. And when we celebrate others with gratitude, our relationships are fortified.

As I cross this new threshold on my spiritual journey, I am rendered so grateful for the foundation laid at home, by other church leaders, and by spiritual and godly people I have met throughout life. Without all of those twists and turns, hills and valleys, I would not have ended up on this path. I have love and respect for all of you and remember you in my prayers.

A Stranger: To harken back to my previous post, last Wednesday evening was spent with the prettiest guy I’ve never met. Despite all my delusions of grandeur, that is precisely what John Mayer is to me: a complete stranger who hasn’t the slightest clue I live and breathe. However, his heartfelt apology for some especially unsavory remarks really resonated with me. Because he forced himself to become reacquainted with humility. In doing so, he discovered that where humility is, gratitude will be there, tagging along.

Since then, John’s example has given me an easy recipe for perspective. Step one: acknowledge that I can’t conquer demons, master reinvention, or do a single significant thing without vital love, input, and support from others. Step two: embrace and employ gratitude. Reinvention and conquest will follow accordingly. Repeat as necessary.

[You’ll be alright, John. Thanks for coming through for the people who have supported you. I still believe in you, and know that you will only emerge from this situation stronger, now that you’ve gained  some awareness. There will always be angry people, but- as you reminded us in Nashville, there will always be people in your corner.]

A Recession: I have been out of graduate school, unemployed, and living at home for around 14 months now. Time flies when you’re needing funds. At any rate, the job market shows no sign of giving me a break, for crying out loud. Not to mention that people with disabilities tend to face some unique challenges when it comes to finding employment. Aside from fear-based discrimination, many “means to an end” jobs [like working in a restaurant, in retail, or as a barista] are not options for people with physical disabilities, as they require significant mobility and dexterity. I’m pretty sure you know already those are not two of my strong suits.

All that to say that things seem a little bleak right now. But after thinking about a lot of other things the past few days (including aforementioned ones, of course), I have realized that without living at home, I would not have had as much time with my family, friends, and the new people I’ve met as I have. I would not have been likely to finish the children’s book, much less start to submit it to publishers and editors. I would not have spent so much time in cafes and been able to consider starting the coffee blog.

Being out of a job and out of school has forced me to forage for other opportunities. Though nothing has come to fruition yet, there are certainly things going on below the surface. Maybe life will finally blossom when the sun returns.

In the meantime, I wait. I grin. I bear it. I am thankful.