When a Little Girl Felt Sorry for My Son


She was maybe 6 years old, smiling and ladylike in a gauzy white dress. The kind of dress that makes me want a daughter. The kind of smile that’s heavy on sugar and light on spice. She walked up to my son as he wheeled in circles outside the sanctuary after church and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello.

And then, without taking her eyes from his face, she said, “I feel sorry for him.”

I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.

Children ask all sorts of question about my son.

Why is he in that? Why can’t he walk? What’s wrong with him? Will he need that thing forever?

But questions are easy. For children, questions have answers.

“I feel sorry for him” is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.

A system that tells her my son’s wheelchair is “very sad.”

A system that tells her he is a “poor thing.”

A system that uses words like “confined to,” “suffers from,” and “bound.”

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A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers and friends.

A system that tells her my son smiles is “in spite of” rather than simply because he too is a child and has access to all the same earthly wonders that she does.

Wonders like fireflies, and candlelight, and going fast, and little girls in gauzy white dresses.

 

So I stood there shocked out of my comfort and fumbling around for words to make this right. I wanted so desperately to undo the damage done by a system that is still learning to accept my son. But I was tongue tied and clumsy as I mumbled something about “not needing to feel sorry…” And I walked away feeling like a failure. As if this little girl represented the whole world, and I had missed my chance to set the record straight.

I realized I am very small. I am only one person.

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Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19 years old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.

“Something’s wrong with that kid,” he whispered to her. “Did you see his back? He can’t walk. So sad…”

I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child’s life is very, very sad.

“It’s not sad,” she said, looking at my son with so much kindness. “My brother was in the Special Olympics. Nothing sad about it. That kid is cute.”

And then my heart turned to mush, and I closed my eyes to keep from crying.

I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.

More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.

I am only one person.

But I am not alone.

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 This post originally appeared on What Do You Do, Dear?

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If I Could Have My Son Without His Disability, Would I?


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Last night, I dreamed that Simeon could walk.

It happens from time to time. The dreams sneak up on me, appearing out of nowhere– then vanishing for months.

Sometimes it’s a miracle.  A kick of his legs, a bend at the knee, and I turn to Greg whispering, “Did you see that?Something has changed.”  And something has.  I am picking him up.  I am placing his tiny feet on the floor.  I am letting go.  He is walking.

Sometimes it has always been this way.  He is on the front lawn. He follows behind Greg.  He toddles shakily back and forth as the cars hum through our neighborhood.  “Hold his hand if you’re crossing the street!” I call.  Boys can be so reckless.

But it never lasts.  I wake up every time.

Hopeful.

Unsettled.

Disappointed.

Guilty.

I feel sick.

My subconscious is so unkind.

What kind of mother dreams that her child could be different?  What kind of mother wakes up disappointed that he is not?

If I could have my son without spina bifida, would I?  Would I change this if I could?

Yes.

Yes.

Yes.

I can ask the question a hundred different ways, but the answer is always the same.  I would make things easier.  I would write a different story. 

But I hear other mothers say, “I love them just as they are.  I wouldn’t change a thing.”  And I am ashamed — and disbelieving.  Surely I am not alone.  Don’t we all want to remove, to ease, to unburden?  Isn’t it for love that we long to take away?

My mother would change me.  Were she the author, my story would be less anxious — there would be no panic. But this does not mean that she loves me less.  And maybe it’s okay to want something different for our children.

Maybe it’s okay to love what is while stealing glances at what is not, saying yes — that’s how it would have gone, had it been up to me.

So I dream with eyes closed, I observe the manufacturings of my mind, I feel every bit.  But I always wake up, I shift back to reality, I find the comfort of our home, the solid bed beneath me.  And even now I can hear him, careening through the house, laughing in Greg’s arms.  His hands outstretched, his eyes wide open.

We are playing a flying game.

And dreams seem far away.  And I am satisfied with what is.

Now is enough.

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This post originally appeared on What Do You Do, Dear?

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On Having Another Baby


I should start by saying that I am not pregnant.  I’m really not.

But sometimes I want to be.

I never planned on Simeon being our only child.  I grew up with siblings and I believe there’s something sacred in that relationship— something I don’t want my son to miss.  I think of lazy Saturdays playing monopoly, the winner sneaking money to the loser just to make the game last a bit longer.  Or Halloween night, when we spread our loot on my bedroom floor, bartering for our favorite foil-wrapped sweets.  I like the idea of a busy house brimming with fights and friendships.  I like the community of family.

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But I am afraid.

I go between fear and love. Fright and longing. I play scenarios in my head…

I fear jealousy. Siblings are a natural measuring stick. We move through life together, becoming grown ups, hitting milestones. But Simeon’s milestones will look different than a typical child’s. Am I inviting comparison? Am I inviting strife?

I fear resentment. Trips to the hospital, overnight stays with Daddy, missing school for appointments followed by the inevitable “special” lunch.  A swamp of jealousy lies there.  And (though the very writing of it makes my chest clench and my breath stop) what of when Greg and I are gone from this world? Simeon’s independence will come with help, aid, check ups.  Is it fair to have a baby, knowing that someday they may be called upon to care for their brother?

I fear heartbreak.  Perhaps the problem is mine.  Perhaps I cannot have a healthy child.  What if I am broken on the inside? What if the fault is my own?  Are not some people destined for a life of sorrow?  What if I am Job?  What if I am Job’s wife?

I fear judgment. I imagine walking down the street, belly big, face aglow, my son on wheels behind me. Will people congratulate my good fortune or will they grow solemn and offer prayers that this time things go right? Pregnancy should be joyful– I am afraid of not seeing my joy reflected back at me. Or of hearing whispers saying, “I hope this baby is healthy– for her sake.” What if people assume I am being reckless?

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But then I stop. I picture my brother and my sister. I picture late night movies. I picture dress up and wrestling matches.  I picture the abundance of pain, the ways we have wounded each other, and the love that blankets us still.

I think of how I adore my practically-perfect little boy.

I take stock of the love around me now.

I see there is more to come.

Some decisions can only be made from a place of love — not from a place of fear.  

Choosing not to have another baby because I am afraid is like choosing never to see the ocean again because I am sunburned.  Will I miss out on the beauty because of the sting?  Will I choose fear over love?

No.

I choose to sit, red-cheeked and wounded, on the shore.

It will be warm.

It will be breathtaking.

This post is in answer to a question I received back in October.  Anna (another SB mom) asked: Do you guys think you will have more children? I’m just curious. I waver between, “Of course we’ll have more children” to a mild panic attack at the thought…

This post originally appeared on What Do You Do, Dear?

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Watching 'Frozen' With My Daughters: Disability as Superpower and the Power of Sister Love


My kids are only 2, so I’m still not fully in the loop of kid-culture. “Frozen” largely stayed off my radar during its run in theaters, because I am NOT crazy enough to take these two to a movie in a theater yet, and I didn’t even see trailers because we don’t have cable and they don’t show ads for movies on Hulu very often. I’d see posts in my social media feeds from moms of older kids complaining about watching it for the umpteenth time or having the songs stuck in their heads, and I even saw a few videos shared that related to the film, like those self-declared good-looking parents lipsynching. (Tip: unless you’re Derek Zoolander, never talk about how good-looking you are.)

All that said, the other day we bought “Frozen” and tried to watch it as a family. The girls had a long, late nap that day, so we were looking for a low-key evening activity. And I’d been kind of curious about a movie I heard was about two sisters — I have a sister and am raising a pair of sisters and YAY SISTERHOOD, you know? I popped popcorn, and all four of us snuggled on the couch, and we pressed play. Elmo? the girls asked. And kept asking. Basically, through the entire movie they wanted to know where the heck Elmo was, and if Elmo wasn’t in this movie, why were we watching it at all? We didn’t even finish before putting them to bed.

But I caught enough of the movie to dig a fairly feminist message of sisterhood and familial love being as strong and important as romantic love, and I knew I wanted to really watch the film, despite my distaste for Olaf the Abominably Annoying Snowman. So the other day when the girls were napping, we watched Frozen again. And upon this viewing, I noticed something different. I started to see a disability narrative where I hadn’t seen one the first time, perhaps because I was distracted by all the demands for Elmo. As I watched this time, I started wondering which of my girls was Anna and which girl was Elsa, the same way my sister and I used to say, “I’M BELLE!” back before anyone needed a Buzzfeed Quiz to identify with a fictional character.

And it occurred to me, my little white-blond Claire is Elsa — not just because of the hair, either, but because of Spina Bifida, too. Like Elsa, Claire was born with something that makes her different. Something that has risked her life, something that many might think she should be ashamed of or at least try to conceal and minimize as much as possible. Like Elsa, Claire will have to learn how to live with this difference and will perhaps grapple with it, struggle against it, though I hope she will not. I hope she’ll accept her whole self as a whole person, and I want her to see her disability as just another way of being a person in the world, but I do know that like any other part of ourselves that makes us different, she may struggle a bit before she decides how she feels. Elsa, for much of the story, has the idea that her difference is something that must be hidden, that is dangerous to others, that is a barrier to her participation in both family and work life. Notably, this is something she is taught, as at first she plays around with her powers and sees them as a way to connect with her sister. I never want Claire to get the idea that her difference is something to hide. “Conceal, don’t feel” could basically be summed up as the opposite to my philosophy on identity and self.

I admit that I worry that difference will come between Claire and Etta, that one will resent the other either for being able-bodied or for requiring more care and attention, just like Elsa’s powers come between her and Anna. I also must say that I hope they realize the bonds of sisterhood and family love draw them closer than any difference could ever separate them.

Maybe one day, when my girls are a little less Elmo-obsessed, they will be able to watch and identify with Frozen. I hope they don’t get caught up in who has power or who is different. Instead, I hope they understand that for both of them, able-bodied and disabled, the things that make them different are essential to who they are and that the love and the bond of twin-sisterhood between them is stronger than any difference could possibly be. I’d be fine if they avoid cavorting with annoying snowmen, though.

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This post originally appeared on The Adventures of Ernie Bufflo.

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My Son’s Disability Defines Him (and Why I’m OK With That)


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I’m sensitive to words. I think they’re interesting. I think they’re fun. I love that words have meanings behind their meanings.  I love that definitions are so inadequate. When you’re the mother of a child with special needs, you hear a lot of different words that mean the same thing.  Disabled, handicapped, differently-abled, special needs, wheelchair user– and amid these swirling words, each carrying connotations like verbal baggage, I see patterns.

Just the other day, I noticed a trend. While scrolling through my Facebook news feed, I read an update that went something like this:  “My friend’s son (who happens to have spina bifida) just got his first wheelchair!”

“…happens to have…”  I’ve seen this kind of language before. I’ve even used it myself.  

A girl, who happens to have CP.  
A child, who happens to have Down syndrome.

Happens to have— a purposeful afterthought. We use these words to create distance between our children’s inner selves and their outward physical state.  We want to separate the people we love from situations that are less than perfect. We don’t want their bodies to define them.

But the truth is, my son doesn’t “happen to have” a disability.

He just plain has one.

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His experience with disability will be (and is even now) woven into his life.  It is embedded just like being a child of divorce is embedded in me. Or being the father of a child with special needs is part of my husband’s identity.  My son’s disability is defining. It is not a side note. It is not a post script. In the story of his life, his disability will not be scrawled hastily in the margins nor will it be offhandedly mentioned in the afterward. It will be front and center, along with his strengths, his flaws and his accomplishments.

Do I think that my child is nothing more than his bodily limitations?  Certainly not.  Do I believe that his diagnosis is an adequate definition of who he is? Not at all. But having spina bifida is a significant piece of his life story and there is nothing about who he is or where he comes from that I want to gloss over.  I want him to see himself in full.

If we believe our children should have pride in themselves, that they should respond to every aspect of their lives with grace, then we cannot separate them from their circumstances.

I don’t want him to say “take that!” to his diagnosis– I want him to thrive in it.  I don’t want him to downplay– I want him tocelebrate. I want him to say disability and hear dignity.  

I want to look my child in the eye, loving every inch of potential and pain, saying, “You are my son. You are defined by your experiences and your reactions to them. You are defined by your mind and your body. You are defined by your kindness and your faith and your integrity. You are defined by your disability. And every piece of you is beauty.”

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This post originally appeared on What Do You Do Dear?

The Song That Helps Me Appreciate the Wonder in My Son's Spina Bifida


The drive up to see Henry’s specialists is a long one, and most of the time we need to wrassle everyone in the car and hit the road before the sun’s even come up. Clinic days start promptly at nine. We leave the house at six-thirty to avoid rush hour traffic, we drive 90 minutes (if we’re lucky) up to Park Ridge, and by the time we find parking and grab a muffin for June, it’s time to report to the radiology lab for Henry’s pre-admission ultrasound. By 9, I’m exhausted and we’re usually only still in the waiting room. Clinic days are a doozy.

Every clinic day is different, but we’ve developed something of a tradition. Every time we go to the spina bifida clinic, I swing by Starbucks, purchase a big-ass iced chai latte and pull out Natalie Merchant’s Tiger Lily CD that my husband purchased at Half Price Books last year (it’s always in our car because seriously? Have you heard it? That album is great). I turn on the second track and drive into the sunrise with this song on blast. I even throw in a fist-pump or two if it’s not too early.

I love her songs. I was eight when that album came out, so it reminds me of early fall afternoons as a third grader, watching episodes of Pop Up Video and eating fruit roll-ups while I struggled to do my math homework.

I blast that shit.

“Too noisy!” June hollers from the backseat, but mama don’t care. There’s one song in particular that I have to hear.

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing 

Maybe it’s too on-the-nose. Mama don’t care. I had heard this song before in the third grade, and it was catchy, and I’m pretty sure the Pop Up Video version made my afternoon, but when I listened to it after Henry was born the entire world melted away and I grabbed my noise-cancelling headphones and blasted it because I was hearing it all for the first time. This is our anthem. And what more appropriate place to listen to it when we travel back to the place where we were first told our little boy would never walk?

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

I adore this song and it resonates in my bones more than any Haas/Haugen song at Sunday Mass. It’s become our anthem. This child will be able. This child will not suffer. He will make his way. It might not be the same way everyone else travels, but dammit, he will make his way.

And it’s haunting — if I could go back in time and tell my old self anything, I would do exactly what Destiny is doing in this song. I would laugh. At the cluelessness of the doctors. In anticipation of our joy. I would whisper in my own ear: He will be able. He will be gifted. He will make his own way. You have no idea. 

I was accused a few months ago of lying. The specifics are unimportant, but basically I got into it with a bunch of strangers in an Internet combox who were asserting that a life with spina bifida is miserable, horrible, and that abortion would be a much preferable alternative. Needless to say, I disagreed. Others chimed in, saying that spina bifida was “incompatible with life” and that I was “minimizing” Henry’s “suffering.” Obviously, spina bifida was awful, and I had no earthly idea what I was talking about. Man. I’m the worst!

Is it difficult, this road we’re driving down together? Yeah. It is. And I want to write more about the difficulties we’ve faced — as a family unit, as a married couple — because sugar-coating our journey ain’t gonna help anybody. My marriage has scars, and I won’t pretend that it doesn’t.

But isn’t that what’s great about wonder? It’s a feeling of surprise, mixed with admiration. We are living this life. We’re walking down this difficult road together, our spina bifida journey. And I fully expected when we got the diagnosis — in all my ignorance — that it would be nothing but hardship and constant misery. And it’s just not. And I’m surprised. And I laugh. He is able. He’s not perfect. None of us are. But we’re able. And we’re making our own way.

And this boy? My smiley boy? So worth it.

I wouldn’t trade this fabulous life of ours, this sometimes-daunting road we’re walking down together. We’re making our own way — with love, patience, and faith. And I wouldn’t trade it for all the gold in Gringotts.


This post originally appeared on wifeytini.com.

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