Thursday, April 15, 2010

Season of Worry: Parenting with a disability

Here's a link to an article I had published recently on a parenting website.

Sunday, February 14, 2010

Keeping my father company

I talked to my father yesterday. This wouldn't be a big deal except that I haven't talked to him in a couple of years and I knew it would be a shock for him to hear my voice.

First I got a call from my brother who was panicked about the possibility of my father's death. "He's having trouble breathing again. He called me in the middle of the night. He's scared."

"Have you called 911?" Sometimes I could kick myself for my knee-jerk crisis counselor response.

"No," says my brother. "He doesn't want to go. He hates hospitals."

"We all hate hospitals,"I wanted to yell to him, call 911."

But I didn't say that. I let my brother talk about his difficult relationship with our father. How he had mixed feeling about having to take care of him now. How he wished our father had taken better care of himself.

"...And he's still smoking dope."

Several years ago my father was diagnosed with emphysema and congestive heart failure. Smoking of any kind is tantamount to a suicide attempt. I didn't say that either.

"I understand that it's his choice to smoke," said my brother.

"It's the choice of an addict," I countered. My brother cleared his throat. He didn't like how I framed our father's life in the context of his various addictions.

"...So I'm calling to tell you that I don't know how much time he has left."

There was a pause.

"Okay," I said.

He was waiting me to say something more and when I didn't he started talking fast. He talked about his responsibilities about his mixed feelings about taking care of him, about not wanting to pass judgement on my relationship with our father--

"Are you saying you want me to call him?"[

My brother sounded instantly relieved. "Would you?"

"I'll call him, I said.

Shortly afterward, I got a call from my mother. She was worried about my brother's agitation over his father. She told me she would go over to my father place to see how he was doing.

"I'll get him to the hospital," she said."

"Are you sure you wanna do this?"

You're brother has to work. I'll do it."

My parents have lived apart for decades. She viewed him completely differently now. He was ill, physically weak, a shrunken version of his former brawny self He was no longer the big, loud overwhelming abuser she once had been forced to escape.If anyone could get him to go to the hospital, I knew she could. She was heading over there once she off the phone with me.

I'll call him and keep him company 'til you get there," I said.

"Good, she said.

My heart beat a little faster at the thought of talking to my father after such a long silence between us. Would I run out of things to say? Should I do this? A five second debate flashed through my head. Should I do this? Would I run out of things to say I made sure I was comfortably seated, and dialed.

"Hello? He answered the phone almost immediately. I imagined lying down in his apartment, his phone right by his hand,My father's deep voiced quavered. He was breathless, gasping. The low timbre of his voice washed over me and I wasn't nervous anymore. This was the voice of my childhood.

J?" I said, It's Katinka"

"Oh!" he said. 'Oh!"

"I'm breathless, he said.

"I know," I said. People have been telling me that you're going through a hard time."

"I have a cold and it makes the breathing even worse."

"Mom is on the way to help you. I'll stay on the phone with you til she get's there."

Yah? He said. The thought of someone coming over, even my mother was already making him feel better. He was trying to catch his breath but couldn't do it.

"Please pardon me, he said, "I can't talk much."

"I'll talk, " I said.

We stayed on the phone for about forty minutes, until I heard my mother take the phone from him and tell me she'd arrived. I talked about anything I could think of, about Ethan, about my cat who was sitting on my chest, about my recovery from my accident, about lovely New Jersey. During the call my father did ease his breath. He seemed less nervous. Considering our family history, the danger, the domestic violence I could've easily hung up on him or yelled at him or ignored him altogether.For me, this call was a small example of 'staying in the moment' of letting go of painful history to help my father feel better in the present. It occured to me that even the most estranged, exploded family like mine no doubt is, sometimes has the rare chance to come together and support one another. At least while we're all still breathing.

Friday, January 29, 2010

The Halo effect

It's been three weeks since that remarkable interview at the independent living center where I hoped for a case management job. During the interview I felt that interviewer and had truly connected. The flow of our conversation was both relaxed and tinged with the excitement of this job being such a good fit with my social service experience. We talked about the second interview where I would meet the director of the organization. I asked as I was leaving whether I should call in several weeks 'just to see where we are" in terms of scheduling a second interview.

"No," my interviewer said, "we'll call you."

That call never came. So I didn't even make it to the second interview.

I can't help but ask myself--is it something I said? Is it my resume? Am I too old? Did I come on too strong or not strong enough?


We had such as vibrant conversation, I thought. At one point during our exchange, my interviewer said, "It's such a pleasure to meet someone and not have to explain the meaning of the Independent Living Philosophy."

"I am the Independent Living Philosophy," I said and we laughed. From the beginning my interviewer said repeatedly how much she admired the things I had done. She wanted to know all about my work as a Writing Coach, a business I had started that is commensurate to my interests (and my degree) and a way to bring in some extra money as I look for a job While the interview flowed easily, a little alarm went off when she started admiring me aloud and veering away from my qualifications for the specific job.

She showered me with praise. I'll admit it felt good. but somehow it also created some distance between us. She put me on some kind of pedestal because I wasn't looking for assistance like the usual client with a disability. I was actually putting myself out there for a job, like anyone would do.

It would be easy to find fault with my interviewer. Too easy. I liked her intelligence, her frankness. She would have made a great boss. When someone sees me as a functional independent person, I tell them stories, give them work-related examples, evidence of that functionality. Is that too much information?

Maybe. If it is, I feel like it shouldn't be.

As we were talking I felt a halo appear above my head. I saw it there as clear as the bullet points on my resume. Did she create the halo or did I conjure it for myself ?Don't tell me how fantastic I am, I wanted to say to her. Give me a job. Halos are lovely because they make everything seem golden. Halo's don't help pay the bills.

The other tactic of Not giving information about my accomplishments feels like it dumbs me down, plays into a streotypical a narrow image of disability which hardly feels appropriate.

The answer must be to find the balance between "Disability fabulousness" and the reality of my day to day life as a person, a woman, a mother, a writer, a social service professional with a disability.

It's slightly ironic considering that by definition, with my cp, I have no balance. Literally. The crutches are there to keep me from falling down. My crutches create the balance I need to live my life from day to day. Still it felt good to put myself out there. To know that I'm actively looking for a job and not sitting on my ass waiting for something to happen.Some friends are saying that I should call my interviewer back anyway, just to check in. Jog her memory. Keep it casual. All I can say to that is: maybe.

Thursday, December 31, 2009

Some Difficuly, Corny, Silly and Real Lessons I Learned in 2009

1. Watch out for cars! They don't see very well and have big, big teeth.

2. Pain management is a good thing, even if it comes in the form of bracing cups of tea and chocolate chip cookies.

3. Play with your kid during unexpected moments. Makes both of you feel really good. I played hide and seek with E while shopping at a holiday sale at the Gap. Made E happy, made the sales manager sad.

4.When your kid says "I have something to tell you," put down the cell phone tear yourself away from the computer, and listen. At least until your next email notification.

5. When dealing with a souless organization stay calm. If that doesn't work, write many letters and make many phone calls. If that doesn't work yell. If that doesn't work do all of the previously mentioned at the same time. If that doesn't work start your own soul-full organization.

6. When you need help ask for it. Really.

7. Never underestimate the power of uninterrupted sleep. And good books and friends and that funny OT contraption that helps you pull your socks on.

8. Get outside when you can. There will be lots of days and nights when you might not be able to go outside.If you don't go outside when you can all the days and nights will run in together until all you notice is the greyness of things and then people will want to give you drugs to turn the lights on inside your head. Believe me, going outside is easier.

9. Remember: You are not alone. You are not alone. You are not alone. This is especially evident when you leave your house.

10. Life is equal parts difficult and beautiful. I don't know, I'm still thinking about that one but I do know that when Your Life Truly Sucks it will soon pass into another moment that may suck less. Try to hold on for that suck less moment. It'll happen.

11. Add your own lesson here: ______________________________________

Sunday, December 20, 2009

The Hug Schedule

As as I was tucking Ethan into bed the other night, stuffing every free space on the mattress with stuffed animals, turning on the nightlight and generally performing the nightly before bed rituals, Ethan said to me with absolute certainty, "Mommy, I need a schedule."

"Schedule? What kind of schedule?" I had no idea what he was talking about. It surprised me that this gleefully rambunctious four year old could come up with the word, let alone the meaning of it. Let's get real: I would love to be one of these supermothers that keeps their kid on an activity schedule, sets up recurring playdates and is organized in that soccer mom kind of way. I count myself lucky that my son likes to go to bed at the same time every night and takes bathes voluntarily.

"Nooooo Mommy," he said in that exagerated, exasperated way of little kiddom "This, is my schedule. This pillow." He picked a small pillow decorated with painted lobsters. He listed numbers out loud : ..."50, 72, 12, 41....." Ethan waited for me to understand.

"You want to make a schedule of numbers?"

"Schedule for hugs!" he said and let himself fall back on his captain's bed for added drama.

"Ohhh! I said, you want to make 'Hug Schedule.'

"Yes, Mommy! Yes!" Excitement ejected him into the air.

Let me explain: When I got home from Kessler, Ethan was certain that I would, suddenly and without warning, go away again. To give him extra reassurance, I started a new routine at bed time. No matter who puts him to bed, I visit him without fail, five minutes after lights off. The 'Five Minute Check' as we call it, usually entails a hug. I sit in my wheelchair and he scrambles up on my lap. After he chooses a number from 1 to 100, the hug must last the number of seconds he dictates. Every night, he giggles as I squeeze him for all he's worth. I whisper and count in his ear. He let's his body go slack in a swoon and completely relaxes. This little ritual is just enough for him to pop happily back into bed without a worry of where I'll be when he wakes.

The next day at the kitchen table we made a grid of the days of the week and we filled in the squares with numbers. Ethan scribbled a bit on the page and pronounced it perfect. He took the stickers from a bag of apples and used them to stick the Hug schedule to his bedroom door. That night he checked the grid and declared that tonight being a Thursday was a 49 second hug. According to the first row of schedule.

"Okay," I said as he hopped up on my lap. He stared at the grid from his higher vantage point.

"What happens when the we use up all these numbers?"

"We'll make another hug schedule."

"Good," said Ethan.

I gave him a good squeeze and start counting.

Sunday, November 29, 2009

Trains, Planes and the Garden State Parkway

While I take a few hours of writing for myself, my son is on an adventure today. Like most four year old boys, Ethan has a rabid, unerring, constant passion for trains. Well, he loves vehicles of all sizes but trains are by far his favorite. Oh and did I say he loves maps too? Especially New Jersey and New York maps dotted with local highways and turnpikes and skyways.Cabbies around here become a little freaked out when they strap my son into his seat and then he gives them precise directions home. When we go to our neighbourhood Krauzer's for a quart of milk unlike most kids who'll beg for a lollipop, E will beg for a lollipop AND a map of Hudson County.

Today, Ethan is driving with his daddy to Jersey City and from there, they're taking a the path train into the city. In one fell swoop all of his major interests will come rushing up to meet him: trains, maps and handing money to grown-ups. He and daddy will have an indepth conversation about what route to take to Jersey City, and then--this part his a surprise--go down into the train for the first time. E may well be wide eyed with excitement! The noise! The people! Daddy will let him pay the fare and they'll hold hands as they step onto the car. E will rivited by the rumble, maybe a little frightened by the flashing lights and the darkness of the tunnel.

And if that isn't enough, once they re-emerge into the city it's just a quick walk to Dinosaur Hill a small but spectacular toy store on the Lower East Side where I'm sure E will avail himself of a tiny fire engine or a garbage truck, some four wheeled thing that fits in the pocket of his jeans. Then, after a well deserved snack, chocolate milk and a cookie I wager, they get to do it all again back to the car in Jersey City.

Don't misunderstand, I'm grateful to have this small window of time to write without interruption. It's a beautiful day in the neighbourhood and I plan to enjoy it. But I also look forward to that new knowing look in Ethan's eye, that look of actually having been inside a passenger car of speeding train.Later, When I ask him how his day was, he'll look at me only say, "Good." And then he'll go back to the business of constructing a garage on the living-room floor.

Saturday, November 14, 2009


Since getting my cast off on October 24th, I've been dragging my ass. I've been mopey and dopey instead of celebrating the fact that I'm actually recovering from what was a difficult accident for me and my family. I've done the work: taken the meds, worked the gym, talked to the lawyers, confronted the machine that is the Insurance Industry. I've been my own best cheerleader yet I find that I'm cranky and blue, generally getting in the way of my own ordinary happiness.

I did what I would normally do when I find myself in another such foul mood, I went for a walk. This time I walked in my local library while E was happily absorbed in a pile of Clifford books. The floor of the library is carpeted which cushions the impact for my left leg and ankle. I couldn't help but notice that since I've been wearing that god awful 'old lady' support stocking, the pain in my foot has greatly diminished, and bearing weight in my castless leg wasn't half bad, really. So, taking a deep breath I shuffled along keeping my grunts to a minimum so as not to disturb my fellow readers at the library. After a while, I became aware of the rhythm of my own footsteps, moving one crutch and one foot forward slowly and simultaneously, first the left, then and the right, left and right and so on.

And then, in midstep it dawned on me. I hate moving slowly. I hate it. When I move one leg after another with way bipeds do, my navigation feels self-concious and utterly, interminably slow, as if I'll never get to where I want to go. Walking like a biped, I feel CRIPPLED in the worst sense, deflecting the sypathetic glances of well meaning bipeds. I huff and puff and inch along. Fact is, since my accident, my legs have been too weak to carry the weight of my tried and tru swing-thru walk. That is, I move two crutches forward at the same time and swing both my legs forward in a kind of hopping mini pole vaulting move. It's my walk. It's my CRIP walk. It's the way I cover twice as much ground in half the time. It's the walk that compels stranger bipeds to tell me to slow down. It's the walk that makes my mother sigh and my physical therapist cringe. It looks crooked and dangerous but it works for me When I walk like the quadruped that I am I feel autonomous and strong and in control of my body. Walking like a biped makes me feel like I trying to measure up to a standard that doesn't make sense. I am NOT one of crowd. I like my loud, happy, hear- it- for- miles gallop.

There I was on the top floor of the library and I thought what the hell, let me give it a try. It hasn't happened in a long time but maybe today will be different. I readied my crutches and moved them forward. I tranferred my weight and what do you know, my legs swung! No big deal, no huge struggle, no wobble or fall or 'oh no' moment. Before I knew it I was relaying around the circumference of the library giggling like a kid in a playground. Yay! I'm a Quadruped! I AM a Quadruped! I motored over to E, laughing, gasping, feeling younger than I have in years.

"Hi E!" I waved a crutch at him talking louder than I should've but what the hell.

"Hi Mommy," he said calmly. "I'm reading about Clifford the Big Red Dog," he said.

"That's good, Boo." E went back to his book. And I spun around to give my legs another chance to swing.