My Disability

Night settled in. Walking to my car I thought, what do I have to complain about?  I can feed myself—walk—talk—and I don’t wear diapers. Things I take for granted. Daily. But not tonight.

PREFACE
I love working with kids, and have been in working in junior high youth-groups upwards of five years. I’ve always considered my love of kids is amplified by the fact that I have none. Something I consider a HUGE blessing.

Being an aunt is the best thing in the world. Working with and teaching kids is amazing. In all instances I get to give all my love and attention in these short spurts. And it’s all I desire. No more.

And when it comes to babies, honestly, that whole “mommy gene” missed me. I’ve never felt a clock ticking in me, telling me to have a baby. And when I’m around babies—spit, spit-up, snot, crying, diapers, and that total dependency kinda freaks me out. Which is why that night, I found myself confused.

CAPERNAUM
Recently I’ve been working with a special group of teens and young adults. They’re mentally disabled, which is often paired with a physical disability. It used to be okay to say “mentally retarded”—and it’s how my family has always classified my aunt. But now you have to be careful—even in California they’re banning the term “retarded” and will spend tax dollars to go back into legislation to replace “retarded” with “intellectual disability.”

Hum. I could go there… but I won’t.

Back on track: the kids at Capernaum have all types of intellectual disabilities. Be it Downs, Angelman, Prader-Willi, or Williams Syndrome. Or Autism, Tourettes, Cerebral palsy, Fragile X, or about 100 others—these kids gather to socialize, play, eat, talk, and learn about God. Some are running/walking and seem “all there”; while others are strapped into a wheel-chair—locked inside a body that won’t respond.

This one night I was doing fine, playing basketball, talking, laughing, visiting. Then a gal came up to me and asked me to take over with Karra (not her real name).

KARRA
Honestly counts right? Here it goes.

Karra is one of those kids I tend to avoid. She’s bound with a belt to a wheel chair. A bib-towel is wrapped around her neck and falls into her lap—clearly catching her drool. Thick slightly greasy brown hair is pulled away from her face by random-oddly placed clips. Her pink-glitter shoes dangle limply to the ground. She doesn’t talk—but she does wail.

My care instructions were simple, “She can self-feed if you break up the food—sometimes she’ll hold a cup to drink. Thanks.”

And that was it.

And for a split moment I froze. Smiling as the kind woman walked away, I wondered how quickly it would be discovered that I had no idea what to do for Karra. I was about to fail. Then a burst of sink or swim came over me.

SUPERNATURAL
I told you I’m a germaphobe, right? And maybe that’s part of why I’m not fond of babies. All the spit and poop and vomit. And there’s Karra… and its snack time.

The first thing I noticed is how wheel chairs are invisible. We waited at the back of the line as able-bodied kids crowded in. Once the table was cleared I wheeled Karra up. Feeling silly, I asked her what cookie she’d like. Knowing there would be no response I chose the ones with M-n-Ms. That’s what I’d want. Then breaking the cookie up into small bits I offered her a nibble.

{crickets}

She didn’t reach out. I didn’t know what the next step was. Do I feed her? What if I insulted her? I knew nothing about this girl. Was she “there” or not? Taking her hand, I placed a crumbled bit into her palm. Her hand quickly disappeared into her mouth. She chewed the cookie—with her hand in her mouth. This produces great amounts of slobber. I wanted rubber gloves.

Before long she verbalized a happy nom-nom as one cookie-bit after the next was consumed. It took a terribly long time to eat this small thing I would easily cram into my mouth with one bite. Yet my patience never seemed to be taxed. She was dependent on me—and it was totally okay. It was my honor. And before long I could care less about the chocolaty drool. I was so happy that she was happy.

I forgot I was germaphobic. I forgot my issues with other people’s bodily fluids. I forgot I disliked helpless dependence.

GETTING MESSED UP
Unbeknownst to me, Karra doesn’t like loud noises—or small group time (when a message is given and the participants discuss). No one told me that she would begin to buck backwards in her wheelchair and wail. And I do mean wail. Loudly. Someone quickly came over to let me know Karra usually is walked around, as they pointed towards the exit.

Got it!

I started to move her wheel chair and she quickly calmed down. So with one hand I rocked her chair and with the other I combed her hair with my fingers. It seemed to melt the bones in her neck. She rolled her head back and stared into my eyes. And in that moment I was lost and messed up. Big giant brown eyes watched me. Deep eyes like those of an angel that could see straight into my heart. I wanted to cry. I felt ashamed of who I was—and the Karra’s that I avoided.

JOYFUL NOISE
As forewarned, eventually Karra wailed uncontrollably. Moving outside was a soothing salve for whatever she needed. We walked, stopped, looked at flags whipping in the wind. My heart was rolling through waves of emotions. To calm myself from my own wailing, I began to hum. And again Karra threw her head back to the noise. I crouched down and sang by her side and her small cripple hand began to pat her leg.

Taking her hand in mine, I clapped into her palm. It interests her. Turning her palm over, she then clapped into mine. I felt as though we were talking. And now I really knew how the Grinch felt, because my heart got bigger, and I was more messed up than I’d been in a long time.

Later, inside, kneeling by Karra, she reached for my head and pulled me into her. And the wails had a different tone. There was a joyful noise—just as loud as a wail—but still I could tell there was joy. And in a burst of energy she smiled and reached for me again. I was being shown love in a way I didn’t deserve. If only she could see how messed up I was. How I wanted to avoid. How at first glance I didn’t love her.

It was only later I discovered the spit and bits of cookie in my hair—and how I didn’t care.

THANKFUL
Driving home, the only thing I could think was how grateful I was. Grateful for Karra. Grateful for something supernaturally taking away my germaphobe ways in those moments. Grateful for my abled body. And grateful that I was given this gift—to get a little messed up. And to have hope that I would see Karra and get the honor of caring for her again.

That girl? Now? I love her—and I’m beyond gratitude with what God chose to do that night. And I suppose, that’s why this post is a bit different. I couldn’t think of anything else to write about—that experience is so strongly on my heart.
Sherry Meneley Soiled Wings
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14 thoughts on “My Disability

  1. God supernaturaly shows His love for us by allowing us to give love at the very point where we would never go. You have blessed me with your vulnerable confession tonight.:)
    Much love!

    • Sherry, your transparency is more than refreshing—it’s REVEALING. Not just revealing your thoughts and feelings, your head and heart, it’s like a mirror to me. As the reader. I see stuff in me when I read what you see in you. If confession is good for the soul, then reading your blog is good for the spirit, soul AND body. Because I “get it.” Again and again. Light bulbs go on. God wants to use our MESSES. I just had to say, ‘thank you!”

      • It’s not about the “cure.” It’s about admitting the process. That’s where you reveal truth, not just in yourself, but like you are holding up a mirror so all of us can consider the process of “messiness” going on in our own lives too.

  2. Sherry… thank you. Beyond words, thank you. This post, this experience… this is why I do ministry. And yet I forget. I get caught up in the planning, and the conflict, and the administration, and the self… and I wonder why I’ve lost that joy that sets me free. And then I am reminded (pointedly) about surrendering my own plans for the ones of someone infinitely greater… and I am found again.

    Perhaps this is why I like visiting the hospitals and care homes. People think it is for what I can give in ministry. If only they knew how much more I receive in return. It feels selfish in a way.

  3. Dang girl… you are supposed to do the disclaimer so I have time to get the tissue before I start reading.

  4. wow. just wow. I really hate to admit it, Sherry, but I am still disabled. I don’t even really want to say anything because it scares me. You know? Like I’m afraid to give God permission to do something similar to me. But I’m also afraid of staying cold-hearted…

    I guess I don’t have to figure it all out this very minute, but I certainly can begin to ponder.
    Thanks. I think.

    • Thanks Kaye. Here’s what I know (I even told this to a client this morning): God will put us into places we are comfortable (for me it’s working with kids or art or coaching). And then without warning He’ll provide a moment of challenge smack in the middle of our comfort zone. Kinda like finding a black fly in your Chardonnay.
      And it seems those challenges are ours to take or refuse. Of course in this case, my pride made me accept the challenge of putting my hands onto Karra’s wheelchair… I could have said no. Funny how it didn’t start with my heart – it started with an icky place of ego. But then God worked on my pride, ego, prejudice, fears, and so much more. It was hard. It was a lesson I treasure. A melting I needed. And I wouldn’t change a thing.

  5. WOW Sherry! So many thoughts going thru me as I wipe my tears – your raw honesty and sharing that with the world, how blessed Karra (and Capernaum) are to have you, and how once again you have helped me to look even deeper into myself. I love working with the special needs kids at our church ministry so your story just makes my heart so happy! Thank you my friend.

  6. How do you do that?

    You got me covering my mouth to silence the laughter one moment and then scrambling for a tissue to wipe my tears away.

    *sigh* I love this and love the journey you are on.

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