A Little Empathy Please

Handwritten while camping at Cuzuncle David's in Seward:

"I sit at David's porch. Clouds and blue sky dance above, the breeze quickens. Olive sleeps in the truck. Finally. Her first nap since we arrived Monday morning. Its now Wednesday afternoon and Elias will soon arrive with Bruce and Kathy.

Its quiet now.

Soon questions will come flowing out of my son like waves, endless, curious, repetitive, relentless, soft.

I've enjoyed this time away with only Olive to follow around. No sibling feuds. Easier playground visits without worrying about Elias's awkward social engagements. His off-balance hands that grab ahold without discernment. Its been a small taste of life without special needs. Without cerebral palsy and Autism and visual impairment and diapers at age 8.

Olive and I have spent every morning at the playground and I can actually sit. I can socialize with other parents. I can breathe.

I love my son but there is a weariness that comes along with his array of challenges. A guarded breath that staggers before releasing when he walks upon a playground. How will the other children respond to him? Which parent will he choose to hold onto? Who will he push his way through? Who will he ignore? Who will he mimic? Where will he fall?

With Olive I hope for other kids for her to play with, with Elias I long for vacant swings and empty slides, the whole place to ourselves so I can finally breathe out.

The breeze increases but I see more patches of blue in the distance above Resurrection Bay. Maybe tomorrow will be a nicer day..."

 

Elias arrived soon after I wrote this and promptly hit his sister in the head with his cane because she followed him into the woods. Today he stepped on her head in front of our Mail Carrier. Yes, good day to you too!

You know, I would take all his challenges and more if he could just gain a drop of empathy. Just a spoonful. Hope that maybe someday he'll understand that he can hurt people and make them sad.

"Look at my face, Elias, how does it look?"

"Sad."

"Yes, because you just slapped me in the face. And it hurt.

"No! No it didn't hurt."

"Yes, it did. And I'm sad that you grabbed your sister and pulled her down."

"But I wanted the water sprayer."

"I know, but you didnt say that. You didn't use your words."

"Does the water sprayer.."

"Uh. No questions right now.

"Does the water sprayer spray water?"

And so it goes...

I can be crying on the stoop next to him, like I was yesterday. Sobbing even. And he will ask, "Are we going to the playground now?"

No, we're not going to the fucking playground! I'm not taking you anywhere ever again do you hear! I'm done! Done!!

Of course, I don't say this. I may sigh a bit. Or cut him off. Or put him in his room for a much needed time out. For Mommy. But I don't say everything I feel. Not even close. Not to him.

Sometimes, I think about caregivers of people with Alzheimer's or Dementia as I practice patience with Elias's repetitive questions that circle the surface, turning in on themselves, in an endless loop. I'm reminded of visiting my Great Grandmother in her 9th decade and learning, as a girl, just to answer the question again as if she didn't just ask me the same one moments before. I imagine those closest to her sometimes closed the door and screamed: I cant do this anymore! And then returned to her side with a patient smile.

"Its like putting a square peg in a round hole," I say to Nick when he tries to force Elias to apologize to Olive and our boy swats at his Dad and grunts like a wild pig.

He just doesn't get it.

But then he calls my name from three rooms away and stops. I hear his awkward steps stagger across the floor, he stands next to me as I type, and taps my shoulder three times. I turn and see him smiling, proud of himself for remembering to tap me on the shoulder and wait instead of endlessly repeating my name.

"Come see the elevator I built," he says.

How can I resist?

 

Comments

[Kimberly]

I share in the playground dynamic that you described. Although a different context, I understand that constant concern and worry. I wish I did not have to hover and give impatient kids the stink eye. I then wonder how my child feels surrounded by joyful kids free to use their bodies as they please when their own creates barriers. How physical limitations give way to social distance. You enjoy your respite, but it is clouded by the loss you feel for your child and for you. But you know what, you are there, when so many choose not to go to avoid that worry. You are there.

[Faye]

Thank you for doing such a great job of helping all of us who read your blog to appreciate the difference between the things we have an overwhelming right to think and how we treat the people who test our limits the most. You say so eloquently the things that I feel and think. It's so nice to read your words and be able to think, "Yes! THAT!! That's exactly what I have felt!!"

[danielle in zurich]

Big, big hug.

[nerissa]

I don't have a child with special needs but you capture so well the challenges of parenting...thanks for that!

[Kelly O,]

You give this NICU nurse so much to think about.

[Shelley]

This is exactly how I felt last week when my one son who has ADHD was gone to a family member's house for a week. I just had the one kid and I noticed it was so "easy" and I felt so guilty for thinking that. Son #1 is not uncontrollable and he has a great personality, but he can be hard to like at times(and part of that is that we are a lot alike, I'm realizing...). It's comforting to know that whatever a family's situation, there is someone else that feels exactly the way you do.

[Liz T]

Empathy sent to you! I get it and live it. And then, on an afternoon when our 15 year old boy didn't want to take a bath he took a swing at me. This was day 2 for a new care giver. She is 17 and proceeded to tell me how to discipline him. I chose to laugh although even now I could cry. I did not tell her about the last 15 years I have lived through and the many more I look forward to. Thank you Christie.

[Kate]

Glad you're back! As always, your journey is not mine but the themes are universal and even if the challenges are different I can definitely relate to parenting different kids, frustrations, fears, glimmers of hope etc. anyway, maybe danielle said it best: just hugs. wish we could commiserate over a beer or some chocolate or something!

[Christy]

I'm honored to know that my words speak to others and that you can relate to these feelings whether or not you have a child with special needs. Parenting is hard period. And some days we all just want to throw in the towel. But we don't. We keep on going on. We go to the playground. We clean up our children's shit. We make another meal that will be thrown on the floor and smudged into the table. We kiss our kids' foreheads when they sleep and say, "I love you." And we mean it. Olive is shreaking from her room and part of me wants to ignore her and head out to my gardens but I know I will cave and go back in her room to cuddle one more time. And then I may open another beer and congratulate myself for making it through another day without hurting my kids, another day of kisses and hugs and outdoor adventures, another day of putting my own desires on hold to respond to these newer hearts that beat a little faster than mine. I'm off to snuggle with Olive....