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


photo129_zpsd48330c8

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.

photo323_zps6228aa6e

 

photo414_zpscbcc54c6

 

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

Meet more Mighty moms. Like us on Facebook.


Find this story helpful? Share it with someone you care about.


Related to Spina Bifida

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 [...]

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 [...]

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

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– [...]

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 [...]