6:50 a.m. My son wakes, looks at me, and raises his leg to ask me to help take off his night AFOs. I undo the three velcro straps for him even though one of his occupational therapy (OT) goals is to do it himself. We’re always crunched for time in the morning, and I want to make sure he’s on the bus in time for his Extended School Year (special ed, multi-needs only) program that starts today.
7:00 – 7:50 a.m. I heat water on the stove for his oatmeal. I help him in the bathroom. I help him get dressed. I give him his iPad to mess around with while I’m busy in the kitchen and get him into his activity chair. I clean the thermos from last night for his breakfast. I mix up his breakfast with the Vita Mix because he eats homemade-blended formula via a g-tube that he’s had since he was 8 months old. I feed him and give him his meds while he watches Neil Young’s Heart of Gold on fast forward because he has just discovered the hilarity of quadruple speed. I pack an extra change of clothes, a notebook, a folder, crayons, pencils, Dynavox (communication device), Diastat (emergency seizure medication), monoject syringe (for g-tube emergencies), diapers, wipes, and the rest of his breakfast and food syringes in his backpack. I go outside to take his wheelchair out of the car. I come back in for him, and as we’re walking out the door, we see that the bus is already waiting for us.
8:00 – 9:00 a.m. I print out all the required documents for my trip to the DHS office to apply for food stamps, because we’re down to $185.26 for the rest of the month. ComEd bill (unpaid), lease agreement (to show rent), bank statements (to show his SSI monthly payments), old paychecks (4/30/13 and 5/15/30). I won’t be paid again until the middle of October. I’m ashamed to admit that my parents are paying my rent until then, but I’m grateful for their help.
There are no classes this summer since the Bridge program was cut, so I am unemployed until fall. I realized as I checked the box that asks if I am employed “No” on the DHS form last night that it’s true. I have four classes lined up for fall, but absolutely no work right now. This is par for course for those of us teaching part-time in the university. “What are you going to do for summer work?” we ask each other as the spring semester winds down in our generic adjunct office we share with the graduate students who are taking our classes without receiving a tuition waiver.
9:00 a.m. – 10:00 a.m. I drive to the DHS office in Melrose Park and discover that the lot is blocked off. There are at least 50 people waiting outside and cop cars prevent us from turning in. I waste another half hour looking for parking, at one point pulling into a lot next to a strip mall where two men are nailing a WARNING: Tow Zone placard up on the nearly-rotten wooden fence.
“Hey, know where I can park for DHS?”
“Nah. You for FEMA? That flood relief thing?”
“No. Just applying for food stamps. Maybe I’ll come back tomorrow?”
“It’s going on all week. Don’t park here – they’re towing everyone away. That’s a $250 fine. You don’t want that.”
Finally I ask the cop by the DHS office for tips on where to park. “25th Avenue, near the Family Dollar.”
Walking along the cracked sidewalk near the taquerias and pizzerias, all kinds of folks are trying to figure out the situation. People backing in, rolling down their windows, yelling to the passersby. “Don’t park here!” women advise into each other’s rolled-down car windows, cigarettes waving in their hands.
As I turn the corner into the DHS lot, I pass by the cop car blocking the entrance. “Lieutenant was killed last night,” the officer in the front seat says. Folks are waiting outside the office with lawn chairs, standing in groups, and facing the front of the building’s entrance which is blocked by another officer.
”Let me help you,” says a guy in a bright yellow IDHS vest.
“I just have a food stamp application.”
“No. Just food stamps.”
“Put it in that folder over there. New applicants. Use an envelope to keep your information private.”
“And then what?”
“We’ll call you in a week for an appointment.”
As I’m leaving, a teenage girl in braids, a hot-pink sweatshirt and jeans rests her weight on one leg, takes a drag off her cigarette, and looks at me. The man in the folding chair rests his head along the top. In the strip-mall parking lot, a tow truck hauls away a ‘90s Cadillac. Driving away, I’m blocked by an unmoving train.
10:00 a.m. – 12:00 p.m. At home, I reflect a bit on the scene and type it up on WordPress before I hit the books. I reread and take notes on “Chapter 5: Infancy” for my Language Development course because I haphazardly did the chapter review without reading the whole thing to get the assignment in on time. My life is crunching time and multitasking. I’m an unemployed English instructor. A single mother of a child with quadriplegic cerebral palsy, the same kind that Christy Brown (My Left Foot) had. A lover of a fuck-up single father who can’t pay his rent. A speech-language pathology student (yes, I’m leaving academia because it doesn’t pay the bills). I’m every failed woman staggering through the mess of her fuck-up life.
Thank God I still know how to smile.
My man texts me from the middle of sorting through the garage to clear out all the junk from his life. He’s moving up here to be with me after living 35 years downstate. I don’t know how the hell you’ve done it, I tell him. “Got the UHaul rented, both parents up here, calling the trash people about extra pickup, calling landlord about giving me three days to get it done. I’m doing it. <3.”
12:00 p.m. – 1:00 p.m. “He’s the most popular kid at school,” the bus aide says as he wheels my son onto the wheelchair lift. “Everybody calling him by his name, rubbing his head, saying bye. The teachers love him.”
My son, unenthused, gestures toward the garage for his trike.
“Not now, babe. We’ve got to get ready to go see Bridget.”
We go inside and he chooses to camp out at the table while I finish his lunch. I feed him, chat with him about his school day, and then we get in the car to go to physical therapy (PT).
1:00 p.m. – 2:00 p.m. In the waiting room, my son lifts up his shirt to tell me he’s hungry as we wait for Bridget to come out.
“I just fed you, babe. You can eat again after PT. I don’t want you to feel sick while you’re working.”
Bridget comes through the door, raises her arms, and says “Hi! Who got a haircut? It’s not Ethan. Not Mom. Not Thai. Is it Finn?”
My kid grins, looks at me, then puts his hands on the armrest to say “I’m ready! Drive me in!”
Bridget gets the ankle weights that she’s just started using to help him with heel strikes and his proprioception, or the sense of where his body is in space. She puts them on him and they take a long walk back and forth through the gym.
“His steps look great!” she says. Then he scissors. “I should know to keep my mouth shut. Every time I compliment him, he starts scissoring.”
She asks about our weekend, about school, about daily stuff. We chat while Finn smiles through his walk, trying hard to heel strike instead of step first on the balls of his feet. “Does he have a bar to hold onto while he gets dressed?” she says. “I’m always thinking about what to do when he’s taller.”
“Our house is pretty small, and our bathroom is tiny, but it works for us right now,” I say, aware that it sounds like an excuse although it totally isn’t. “We do have a bar, though, and Dad has a lot of space. I can talk to him about it.”
“Have you ever worked on just standing with him?” she asks.
“All the time, in the bathroom especially. He’s always trying to stomp or walk when he should be holding still.”
“Let’s do that. Here,” she says, talking to Finn. “I’m going to count to 10 and you’re going to keep your feet on the ground. 1, 2, 3, 4,” she says, and he raises his right foot. “Oh, let’s try that again! 1, 2, 3, 4, 5,” she says, and he looks at me, concentrating really hard and grinning, but keeping his feet down and his body still. “6, 7, 8, 9, 10! Wow! Great job holding still!” she says. I’m impressed.
He does it three more times before therapy ends. I can’t for the life of me figure out why he did it then and not the hundreds of times I’ve tried before, but I’m glad that he’s finally doing it.
2:00 p.m. – 3:00 p.m. “You’ve had a long day, so we’re going to read two stories and have a nap,” I tell him, taking off his tennis shoes. “Pick which two you want, and I’ll get your food.” When I come back, he’s chosen two Piggie and Elephant books, and is sitting up happily flipping through them. We read them and lie down without sleeping for the next hour, cuddling, wrestling, and enjoying our little rest.
3:00 p.m. – 4:00 p.m. When our alarm goes off, he juts up, ecstatic. I help him off the bed and he crawls into his room to play with his cars until it’s time to go to his Dad’s. I give him his alone time. He’s begun requesting it, and I can understand why someone who needs so much one-on-one attention would crave it, so I’m always happy to let him be. He needs to decompress, to chill in his own world without the influence of others.
4:00 p.m. – 6:30 p.m. I drive him to Dad’s, where his 37-week-pregnant stepmom answers the door with a smile. “Your sister’s asleep,” she says to Finn when we get into the quiet apartment.
When I get home, my boyfriend calls. “It’s weird,” he says of cleaning out his garage. “The only thing that bothers me about it all is that I don’t have time to write it down. Everything has an energy. An emotion attached. Everything in disarray.” He’s a working-class poet who writes sentences so clear that you barely even need to read them once to understand what he’s saying. His eyes are spot on. The man can see. And he’s two papers and a creative thesis away from his M.A. in English, which I imagine will do for him no better than it’s done for me. It’s a total crapshoot with everything working against you.
I tell him that I’m going to take a short rest and that we’ll talk soon. I’m beat. My body feels like it’s been crumpled in a fetal position for days. I have no idea why. I pass out with the intention of sleeping for a half hour and wake up nearly two hours later, still feeling like shit.
6:30 – 9:00 p.m. I finish my notes from Chapter 5 after I wake up and promise my girlfriend in D.C., the only other member of the Single Mothers’ Video Chat and Drinks Club, that I’ll video chat with her later. I cross the chapter off my list, along with “DHS,” “Bank – proof of SSI deposit 5/31/2013” and look for more things to cross off. “Coconut milk” means a trip to the store, so I head there to pick it up along with a bottle of 3 buck Chuck.
“I’m glad you brought your bag,” the checker tells me. “A girl told me that she forgot it the other day because she’s in love. If that’s the only problem you’ve got, that’s wonderful,” she says.