Date Night

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We don’t get out much. Jude wants visual on us at all times. I am not even really allowed to wear my shoes around him, because he knows I almost never wear shoes unless I am leaving the house. Same goes with lipstick and perfume. He knows.

We have a nurse, though, someone to make sure he has his meds and doesn’t mess with his feeding tube or try to get up and walk over to the dresser to find his pajamas with the Angry Birds motif and fall and then we are in the ER. No one wants that. Also, we have Asa.

Asa is my friend’s son, and I used to watch him and change his diapers and haul him around in a wagon and stuff. Now he is grown and rides a motorcycle. He is our “respite care worker”, in other words, the state pays him to watch my kids so they don’t have to house me in the psych ward from too much stress. He is perfect for Jude because he finds Jude hilarious, which is the key to dealing with Jude Hills. He’s also good with Eden, who adores him. And the dog. Sage, not so much.

Once Asa picked Sage up at a Halloween party wayyy out in the suburbs dressed as a weird old man (because it was, after all, Halloween, and Asa is just, well, like that.) He sort of resembled a down and out Mr. McFeely from Mr. Rogers. Yeah,  it was disturbing to say the least. Asa rang the doorbell of Sage’s girlfriend’s house, and said, “Ahm here to pick up that youngun…” They very politely invited him in. Sage comes downstairs…”Time to go home, whippersnapper!” Sage just stares at Asa in abject horror.

The drive home was spent listening to Asa ranting about old guy stuff. “We don’t TALK about the war. Y’hear?” “Kids nowadays, they GOT no respect.” For forty minutes. Sage says Asa never broke character once.”Mom, why is he so abnormal? Why are you friends with him?” You just answered your own question, Sage.

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Asa arrives and Jude is already dozing with Linda the nurse sitting near him. I am putting on mascara and trying to turn my giant topiary of dreadlocked hair into something that doesn’t look like it will attack without warning. I spray a bit of perfume on my wrist. I hear from the other room, “MAMA’S NOT GOING ANYWHERE!” Crap. He smells our fear.

When we leave Asa is watching cartoons with Eden and promising like, fifty times to call if there is a problem. I ask Asa if he’ll take me for a ride on his new chopper. “No.”

“Oh, I get it, no middle aged fat chicks.”

“Pretty much.”

Harsh.

So we leave, with a  goal to get me a new nose ring and relax and talk and eat food without interruption. This is a good goal.

We kiss in the car for a minute, and head over to Wicker Park where there is a new piercing place. There is no parking, so Don lets me out while he circles. The place is swanky and the girl is nice, and she has a plan for the stretched out hole in my nose and the fact that I have teeny tiny nostrils and my nose ring keeps hitting my septum, causing nosebleeds and general malaise. She takes me back into the piercing room, which looks like a gynecologist’s exam room, and I know why that is, and I do not want to think about it.

Just then Don comes in and starts telling me how nice my new nose ring looks. “It hasn’t CHANGED yet, dummy!” Piercer thinks this is hilarious. “See what I have to deal with?” She puts in a tiny little stud that doesn’t sink in and looks super pretty and is flat on the back. It’s a piercing miracle, really, and I give her a hug. We are off to find vegetarian food.

We head over to Kopi’s, which we have been going to since we were dating. I remember our first date there, how on the table were decopoged art pics and naked statues of guys. Seeing as we were doing the whole chaste church dating thing I put the salt and pepper shakers over the statues’ naughty bits when Don wasn’t looking. When he turned around it looked like the statues had giant salt and pepper penises. We laughed and laughed and now whenever we go in there we adorn the statue manhood before we order.

We get yummy food and good coffee and just sit, talking and eating. We are still the same two awkward young twenty somethings, all hopeful that this will work out and we’ll be happy. Same damn thing twenty or so years later. We just want to be together, and for things to be okay. Nothing really changes all that much.

Afterwards we head over to Jewel so I can pick up a couple of things before we head home. We get a text from Asa that Jude is demanding a. our presence immediately and b. french fries. So we try to hurry but I just don’t want this time to end. We are in the personal products aisle, because I need stuff that you don’t want to know about. I pick up a bag of maxi pads, the really big kind, and yell, “GO LONG” to Don, who just looks at me with that long-suffering look. I throw them hard, like my daddy taught me to do with a football, and hit him so hard in the chest he almost goes down. He is clutching his chest and taking a deep breath and I can see the store security an aisle down giving us the eye.

“I told you to go long..”

We drive home and park behind the house. We sit there a bit, not wanting to go back in. We kiss a little and listen to NPR. We really are the same two wishing kids. Really we are.

When we get home Asa and Sage are watching TV, having reached a truce for the moment. “FRENCH FRIES” Jude yells from his room. I go in there with the french fries and he tells me to take my shoes off and sit on my laptop, which means, get your computer and have a seat honey, you’re here for the duration.

Don peeks in the doorway and blows me a kiss. Date night was pretty good, even if Don sucks at feminine hygiene sports.

The End

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Fake Rubber Arms and Murderous Flying Frisbees of Death: Parenting Advice for the Faint of Heart

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We had an infusion class today. Having a bleeding disorder means you are missing a specific ingredient in your blood. To treat bleeding or prevent bleeding you have to infuse it into your vein. As in, start an IV. 

Some people have no trouble doing this. Some people, like me, like Sage, have tiny useless veins that are impossible to see, that roll, that blow, and taunt you. “Here I am! Ha ha, missed!” So Sage had a PICC line, and then a fistula, which is a surgically created vein. This was awesome, you could hit it with your eyes closed, it never blew. Only it grew. and grew, and grew until it looked like a big butt on his arm. People would stare at it, and ask him what it was. He would tell them it was ebola, or AIDS. Once he convinced some girls at school it was his unborn twin, and since we are Catholic, (we’re not) he couldn’t get it removed. Then he got in trouble for making them cry. Their parents should cry because they are raising stupid children, but I digress. Sage had the thing removed last year. Now he shows people the scars and tells them he was in a knife fight. 

Eden’s veins are slightly better, so I can usually  start the IV at home. Sometimes I have to stick him more than once. That always make me feel like crap. His eyes brim with tears. “That’s okay, sniff…I know you are doing your best.” Augghh. Worst. Feeling. Ever.

So the Hemophilia Treatment Center does an infusion class. Eden has tried before at Hemophilia Camp. Yes, there is a Hemophilia Camp.   No, the kids are not all wrapped in bubble wrap. Don’t be an ass. He tried but could never get the vein. It takes years to learn to stick yourself with a needle, so here we are. 

There are several other families, and the nurses, two I know and work with, and a new one. The new one seems determined to freak everyone out. 

Now, I am proud to say that I have calmed down over the years. When Sage was two I called the doctor if he “looked funny.” I would follow the poor kid around with an ice pack and factor, just in case. I wouldn’t let him do ANYTHING. Eden has benefitted from the years of learning to calm. the hell. down. And lexapro. These are things that have improved my parenting. I am not ashamed.

Only new nurse thinks I am too calm. She wants me to know disaster could strike at any moment. Aren’t we here to learn about vein access? 

“Does anyone here know why a frisbee could kill you?”

Eden looks at me, alarmed.

“Because if you get hit in the throat, and it starts to bleed, you could CHOKE ON YOUR OWN BLOOD. YOU COULD DROWN.”

“It’s okay Eden,” I say. “I’d hold you upside down so you could breathe.” This seems to satisfy him. 

She looks at Eden. “Why isn’t he wearing a medic alert?” “um, we lost it at the beach?” “Say he gets hit on the head on the playground. Say he’s PLAYING ON THE MONKEY BARS.”

She says that as if it’s comparable to juggling steak knives. 

“Um, I am usually with him?” 

“Well,” she says. “By the time he’s unconscious it’s too late, anyway.”

What the hell does that mean? I decide it’s time to go and get a juice box or something.

Eden and his new friend Miguel are putting a tourniquet on a fake rubber arm they have for us to practice on. Maggie, the calm nurse, is explaining the steps of setting up. Eden raises his hand to point out that we don’t always flush with saline and that I don’t nesscesarily bleach the table before setting up the sterile field. I laugh and tell him of course I do, and roll my eyes, like, “Kids, such liars…” and try to ignore Debbie Downer Psycho Death nurse’s accusing stare.

The rubber arm thing is cool. You can feel the vein and it has purple blood. I am playing with it, touching it, making this farting noise with it that Eden and Miguel think is hilarious. Meanwhile, Debbie is telling us how we should NEVER leave the country without factor. “We had a patient who was dirt biking in Mexico. He ran into a barbed wire fence, people. She makes a sweeping hand motion across her face. “A big, bloody flap. Too much blood to sew the face back on. He’s sorry now.”

So, he’s wandering faceless around the Sonora Desert, moaning, looking for factor, gauze and some steri strips? The look on Eden’s face tells me he is sharing our bed tonight. Thanks, Debbie.

Eden practices with the needle, getting the purple blood return, and I am so proud of him I high five him. “CONTAMINATION” says Debbie. Good Lord. If she could only see what goes on at our house during infusion time. It’s a miracle we don’t all have gangrene, wandering around Uptown..moaning…looking for neosporin and a band aid…

We are almost done, and I am thanking Maggie and Maria and chatting with Miguel’s mom. I promise to replace Eden’s medic alert and get one for myself, and while no one is looking I grab one of the smaller fake rubber arm wrist thingys, because it is going to be SO much fun to practice on it and make it bleed on my friends. 

There was a time when I lived in fear, as if my children were made of the thinnest glass and had to be protected from the tiniest bumps and bruises. I realized damn quick I couldn’t stop them from getting hurt, but I could stop them from living, and it’s hard enough to be a freaking hemophiliac, so you might as well live and do and just bring your factor with you in a cooler. And maybe a rubber arm to freak your friends out with. So here is my special needs parenting advice for the day: Life is short. Play hard, wear your medic alert, laugh a lot, and bring snacks. 

You’re welcome. 

The End

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Self Care

I would like to start out by saying that taking my mother to Walmart does not count as a mental health break by any means. Is there any place more depressing than Walmart? Maybe the laundromat? I already feel so freaking guilty for even BEING there, and then I end up buying stuff. It’s just wrong.

I was buying socks for the shelter, with all the dollars and change from my kids’ holiday sock drive. Yes, I know it is February. Shut up. I’ve been busy.

Eden is with us. We were out near Wally world, anyway, because he has counseling. We all have counseling, because it isn’t exactly a breeze to be a Hill these days. My counselor says I need to practice self care. She gives me homework. Do something nice for yourself. I think she means something other than bolting three Americanos in a row.

Eden needs counseling so he can get in touch with his negative feelings. I keep waiting for that to happen, and wondering what he will throw at me. Jude has no trouble expressing anger at all. Just call up the wrong episode of Caillou or try to change his socks when he isn’t in the mood and you’ll see what I mean. Our lives sort of revolve around making sure Jude doesn’t get pissed off and start screaming and throwing himself around. Sometimes he makes a car alarm noise. It’s incredibly loud and keeps going off until you find out what the hell you did to deserve the freaking ice pick in your brain that is the Jude Hill Car Alarm Sound. Another reason we all need counseling.

Eden is not in touch with his feelings yet, though. I think he just plays with legos in there.

When counseling is over we head on over to Wally world and I try to keep a low profile. I am filled with shame and I mentally list all the good deeds I will have to do to make up for shopping here. Eden is following me with a shopping cart saying things like, “Mom! Have you ever heard the theme song to the fifth level of Mario Kart?” Why no son, I have not, please, could you sing it for me, here in the store? Because my senses are not quite overwhelmed enough, what with all the florescent lights and screaming children and people in my way.

We start piling bags of socks into the cart, 20 bags of socks, not bad. My mom is somewhere looking at fanny packs and nicorette gum. Eden is telling me the entire plot of an Adventure Time episode, which makes zero sense, because I don’t know the characters, and the show makes no. sense. It’s like a fever dream. Image

When we get home Jude is asleep, the nurse is leaving, and the dog is FREAKING. OUT. because apparently he hasn’t been out for a while. Don and I sneak out while Jude is sleeping and Eden is putting on his pajamas and Sage is sort of listening in case someone wakes up or a car alarm noise starts going off. If that happens he’ll call and Don will run up the stairs as fast as he freaking can.

We take Wash the Drooly Dog out to the yard next to the alley. It is full of snow and dog poo, and I want to tell the world the dog poo does not belong to my dog but I am not sure at all which medium to use for this. I may put up a sign. Wash is running around and being super cute, and at one point he does this graceful gazelle leap over a broken lawn chair, which makes us enormously happy. We sorta feel like we are on a date, this ten minute break from parenting. It’s five degrees and we are surrounded by broken furniture and anonymous dog crap, and we are beaming at each other like we just got engaged. It’s pretty pathetic but I decide I can mentally spin it to show how grateful and content we are. Ha.

We come back inside and Eden is standing open mouthed in front of the Cartoon Network with his pajama pants in his hand and his toothbrush in another. This might piss other parents off but not me, not ADD supermom! To paraphrase G. Gordon Liddy the trick is not really giving a crap. Don takes Eden into his room to read to him and I start folding the eleven loads of laundry that I washed on Saturday. Yes, this is Tuesday. Shut up.

When I am done folding (what the HELL is up with all the weird socks that wind up in my laundry? Everyone else loses socks. Mine are breeding and mutating and plotting to kill me when I sleep. I throw them away and they come BACK, I swear it’s true.) I go into Sage and Eden’s room to put their laundry away. Eden is sound asleep with his butt in the air. I poke him with a crayon to make sure. Yep. He’s out. I am thinking Sage is not here but then I hear mumbling up in his loft bed. Oh. He’s on the phone. With his girlfriend.

I silently ascend his ladder until just my head is showing at the foot of his bed. I adopt the goofiest, most menacing smile I can, like an evil clown. I wait until he sees me.

It’s worth waiting for. He completely loses it, shrieking like a little girl.

“Oh my GOD, mom..get OFF MY LADDER.”

“Why are you so weird? Stop looking at me like that!!!”

“What? It’s my mom. I know. I know. Yeah, she’s weird. I KNOW.”

“CRAP! Mom! She just threw a sock at me!! Please, mom! DAD MOM IS BEING WEIRD AND WON’T GET OFF MY LADDER!”

“Mom, stop laughing so hard. BREATHE, Mom, I swear to GOD if you pee on my ladder I will run away. This is why I need counseling, Shelby, seriously. No, she doesn’t have any vegetables. I checked.”

Don comes in. “Honey?”

Sage is irate. “Dad, I am on the phone with Shelby and Mom is having like, this ATTACK on my ladder and she farted, right in front of me, and can you get her OUT of here?”

I hold out my hand.

Don hands me my phone. I take a few pictures. “MOM!!!:

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My work here is done. My mood has improved enormously. Image

Don and I spend the rest of the evening watching Downton Abbey in ten minute increments, because Jude needs us to come in and watch the more intense parts of Elmo’s world with him. He finally falls back asleep. I am tempted to feel jealous of people who have normal lives, people who go to work and see friends on the weekend and meet for brunch. But then I remember that I have a mini van full of socks for homeless guys and a romantic story about lawn chairs and dog poop to spin, and some pudding I bought at Walmart in the fridge. It was super cheap, like 2 bucks for four pudding cups. Pudding’s good, it has calcium, right? Sage comes in and asks me if there is any food, and I hand him a pudding and a plastic spoon, and we sit on the couch and plan ways our Irish ancestors could have blown up Downton without killing any servants.

Maybe I’ll get a manicure or something tomorrow. For now, pudding and fuzzy slipper socks and violent fantasies about the British social hierarchy are as close to self care as I can get.

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Six Foot Zombie Rabbits and The Pet Train Does Not Run Out of Berwyn

There hasn’t been a whole lot of happy. Very. Little. Happy. Worst summer EVER in fact. Even for us. I can usually FIND the happy, but it was hiding.
Jude was in the hospital all summer. No beaches, no pool, no road trips. He’s in the hospital now, in fact. Only, there is a chill in the air, and school has started, and homework, and they found a shot that helps Jude feel better AND be awake at the same time. Bonus.
So I guess there is a little, teeny bit of happy.
Yesterday was good, pain wise for Jude. Eden came down to the hospital. We did a 3-D puzzle while Jude wore the 3-D glasses waiting for the dinosaur to appear. He was very patient with our poor spatial skills. Jude tripped on that awhile and then Eden made us playdoh sushi, which was surpisingly good, even without the wasabi. Grandma enjoyed herself immensely.

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I took the boys home and did some homework with them. Eden’s attitude was better than Sage’s.
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Eden is a perfectionist. My kids have impossibly high standards for themselves, which I do not get, because I just want them to be creative and kind, and happy, and I have to remind myself to remind them to make good grades and stuff. “Do your best, achieve things…uh, yeah.” I can’t imagine what they would be like if I was all tough and critical. They would melt or something.
Then it was time to drive Sage to his friend’s birthday party. His friend is a girl. I called her parents house and made sure that he was not, in fact, headed to a drunken orgy with guns. So I ask him for the address, so I can google it.
It’s in Berwyn.
Berwyn????
I have never been to Berwyn. I don’t leave the North Side, unless I have to, and I don’t go to the surburbs, ever, unless I accidentally wind up in Evanston. Berwyn?? So I google the address, and it looks pretty straight forward. Don calls. “Jude says he lost his ticket for the pet train.”
“The pet train?”
“Yeah.”
I do not know what that means. Neither does Don. Hopefully this will not turn into a thing, because where the hell are we going to find a pet train?
Maybe it’s a cartoon.
So I meet Sage out by the car, and he looks like this.
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He had bought this costume online, because, he saved up for it and I said he could, and I have seen Donnie Darko, and I do not understand it, although I always pretend like I do in front of Sage and Don and their nerdy friends who seem to think it is like, Sartre or something. I just like to say, “I am beginning to question your commitement to Sparkle Motion!” That was worth the whole strange, confusing, disturbing movie. Only, now I am driving to Berwyn with this.
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We make it out there, and it is a cute neighborhood, with lots of bungalows and families, and we get out of the car, and a guy comes up to us, and he’s sort of, crying and laughing at the same time. I recognize that he is just a little toasted, and the costume is blowing his mind in a very big way. He begs to take a picture, and Sage is happy to oblige. Then Sage waves and goes up the stairs and rings the doorbell, dressed as Frank the Rabbit. I pray his friend has warned her parents. He dissapears into her home.IMG_0217
I have several hours to kill. I have no idea where anything is here, but I don’t want to drive all the way back to Chicago. I pull into a McDonald’s parking lot and call Don.
“How’s the pet train?”
“It left without us.”
“Sleeping?”
“Yeah.”
We are quiet for awhile. Just listening to each other breath on the phone. I hang up and call my NA sponsor, and tell her I am not planning on getting high today, which is met with enthusiasm. I drive to a Walgreens and wander around looking at nail polish and stuff that will minimize my pores. I look in the mirrors by the makeup and realize my pores look like sinkholes in Florida. The store security guard is also following me. That happens a lot. Seriously, if I were going to live a life of crime, wouldn’t I try to blend, just a little? I wander up and down aisles, back and forth, weaving my way around so he has to work to follow me. I stop and look at embarrasing stuff, like douches and laxatives and enemas, holding them up to the light high above my head.
This only entertains me so long. I finally leave after buying some dog treats and a nail file, and drive up and down Austin Avenue, watching the people driving up and down with their Mexican flags. It’s Mexican Independence Day. Everyone looks so happy.
It is finally time to pick Sage up. I call him and he tells me to stay RIGHT WHERE I AM, DO NOT COME IN HERE because apparently I am embarrassing. He’s dressed like a six foot zombie bunny and I am embarrassing. He comes out and we are off.
We head down 290, and start enjoying the looks we get from people who we pass and see the rabbit costume. We pull up to a taxi full of older ladies and scare the hell out of them, then he waves at a guy on a motorcycle and makes him kinda swerve. It is 11:30 at night now, and I am confident that no one else does this with their mom, and I am happy about that, it’s just the kind of mom I wanted to be, and we are terrorizing the people of Chicago, together.
We make a rule, no freaking out homeless people or people who might be mentally ill. Not fair. We do a few drive throughss, some security cameras, and get the thumbs up from some drunk college kids. Time to go home.
Eden is still awake, he was supposed to go to sleep on the couch and Grandma was keeping an ear out for him. He is in a sleep deprived adreneline frenzy, and the dog is FREAKING OUT, and Sage and I have to go walk the dog, because I can’t go by myself and Sage can’t either, because of curfew. So I make him legal and he makes me safe. We leave the costume home, because Uptown don’t play like that.
We walk Wash in the grassy parts on the side street behind our house. We can hear music and cicadas and smell smoke and hear sirens a few blocks away. Tomorrow might be another half decent day. We won’t all be together, but we will make it work, because that is what we do. We are good at that. We have to be. Maybe we’ll find the ticket for the pet train, and ride it together. You never know, you really, really never know.

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Dance With the Boogie, Get Down

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Yesterday was bad. The group of kids that Jude would have gone to school with, in the community, was graduating 8th grade. Only Jude is autistic, and sick, and in a wheelchair, and recovering from surgery. So instead of going to graduation he and I were upstairs while he dozed on morphine and I feel sorry for both of us.

But this is the happy blog! We’ll have none of that!

It was really bad. It has been really, really bad.

Today i woke up and decided that it would be a better day. The sun was out, sort of, and it’s the first day of summer for Eden, and my friends bought us a nutribullet. I am going to go to the store and buy kale and blueberries and then we’ll all be cheerful and happy and HEALTHY, dammit.

Worth a try.

Gramma and I did make it to the store, and we got some produce to blend in the nutribullet, which is this smaller blender thingy that pulverized food that is good for you. That way we can drink vegetables and stick them in Jude’s gtube. Gramma bought macaroons with Almond Joys in them for the kids. They won’t want that though, because we are having blueberries and kale!!!

So I put stuff in the nutribullet and blend. Maybe next time I will add some water because it looks like someone’s spleen, but it’s not too bad. I put a ton of that in Jude’s gtube until he yells at me to stop and then we go outside. Eden drank the nutritous glop and ate macaroons.

There is a dance party going on in the garden room, which is attached to the yard, and all the kids are dancing around and some of the grown ups, too. I forgot that Debbie is having a summer kick off party to celebrate her 20th anniversary in the community.

Debbie was my buddy, actually, my charge when she came in. What is funny is she walked in about ten times more spiritually mature than I am now. So back then it was truly silly that she was supposed to be learning anything from me. Debbie and I have been alternately loving each other madly and getting on each other’s nerves for two decades now. She’s very..intense. That’s a thing. Because I am very…intense. Mostly we just make each other laugh a lot with stupid inside jokes. She’s pretty awesome, really. I can’t imagine life without her.

Jude wants to go into the party, and I am thinking, nah, you’ll freak out because it’s loud as hell and there is all sorts of unpredictable movement and flashing lights and really happy people and I am depressed so don’t make me go in there but…okay. In we go.

Hannah comes dancing over, and picks up Jude’s hands and starts dancing. This makes me all verklempt, because I took care of her when she was little, and she is sweet and special to me and a grown woman now and she is being sweet to my kid…yeah. Great. This is why I did  NOT want to come in here. They are ruining my sad. I go over to the snack table and eat generic chips.

Jude is getting into it, though, they are dancing to Hall and Oates You Make My Dreams Come True, a truly stupid song, and Debby and her husband are wearing crazy hats and doing this dance walk towards one another. Again, all this awkward happy fun is a bit much.

Stuart comes over and he and Jude start dancing to Video Killed the Radio Star. Stuart has lived with us a few years. He is wonderfully sweet and happy and funny. Stuart is developmentally awesome like Jude, but in a different way. He likes to yell at people that they are “hired!” or “fired”! Five minutes with Stuart is better than prozac, in my opinion.

Someone makes Jude a circle of glow sticks, and he dances as best he can from the wheelchair. I look around the room, and everyone is just dancing and not caring how redonkulous they look, and I am dancing in spite of myself, to “Brick House.” It’s kind of my theme song. Sage comes in, sees this, and leaves. Another scar for his psyche. You’re welcome, son. It will help your art later on.

Later Don put the younger boys to bed and Sage and I took the dog on a walk and Sage explained the entire plot of Donnie Darko to me, again. I still don’t get it, I just pretended to. I like the sound of his voice, though, and the night. I come home and Jude is asleep with his glow sticks and his party hat still on. I guess it was a better day. Not because I decided it would be, or maybe because I did.

Jude and Stewart dancing and being awesome in general

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Code Décolleté

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My counselor talks a lot about coping methods. Things that are good for me, that I enjoy. She probably means things like yoga or knitting or something. I like energy drinks and late night closed circuit hospital health information videos in Spanish.

Jude’s having surgery tomorrow. His hip needs pinning. The whole process has been stressful,depressing and exhausting. We finally got up to his room about midnight after being tortured and dismissed and gaslighted in the ER for awhile, cause they can’t just TREAT you, for God’s sake, there’s a process you have to go through, because if you admit that parents know what the hell they’re talking about, the docs might lose face. Or because they’re sadists. Not sure. It might be both.

So we are getting settled into our hospital room, and preparing for the surgery tomorrow. Jude can’t eat after two a.m. It’s one a.m. He is demanding snacks. He wants Orange Sun Chips. Cheddar Harvest. Now.

Before today Jude was completely on the wagon, chips wise. In February he hit bottom from a three bag a day habit and came out on the other side after some tough withdrawals. He lost all his clean time today. Don had forgotten the seraquel, and we were waiting in radiology for an xray order from the surgeon. A meltdown was imminent. In desperation I ran to the pharmacy next door and got a bag of orange sun chips. His addiction is a caged animal, released all over again. Like we say in NA, “One is too many, and a thousand is never enough.” I blamed it on Don. He forgot the seraquel. Modeling healthy relationships is important in our home.

So we have exactly one hour until Jude can’t eat for ten hours, and he is yelling for sun chips. Where the hell am I going to get sunchips at one in the morning? Actually, I know all the places in the hospital complex to get sunchips at one in the morning. I am off.

Now, Rush Hospital is a very large medical complex that is connected to an even larger medical district. It’s bigger than a lot of airports, and unfortunately we call it home several weeks out of the year. I know it by heart. By that I mean I know all the different vending machines around the complex.

I’m off. I am running down the hall as fast as my pudgy little legs can carry me. Coffee, monster and mother love power my quest. I hit the closest place, the Harrison Street exit, which has a bank of vending machines called ‘Remedies.’ Processed crap, good for what ails you. There are Ritz Bits, there are snickers, there are granola bars and gum. And Sun Chips! Only they’re blue. Its a no go. He is not going to eat the plain ones, don’t even consider asking.

It’s 1:15. I am on a mission from God. I say that to myself, in what sounds like Dan Akroyd’s voice, inside my head anyway. I make it to the emergency room vending machines. Nada. WHERE ARE THE SUN CHIPS?? The gift shop is closed, which I consider discriminatory towards people who tend to get admitted to the hospital in wee hours of the morning. Looks like Au Bon Pain is our only option.It takes me forever to book down long empty hallways and to wait on the c elevators. When I get to Au Bon Crap I book past several tired medical students drinking coffee and grab two giant m&m cookies, a croissant, a blond brownie, and an oatmeal muffin. I ignore the look the cashier gives me, a look that says he thinks I have issues. Actually this guy has met me several times and he knows I have issues. I am running full force towards the children’s floor now, singing the mission impossible theme like this DAH DAH Ta da da DAH DAH because it’s very nice echoey in these halls late at night.

I arrive, sweat soaked and exhausted in the doorway of the hospital room. Josh the super nice night nurse and Don are talking about movies or music or something. They don’t notice so I back up and jump in, TA DA!! Don looks at me and holds a finger to his lips. Aww crap. Jude is asleep.

I plop down in the blue plastic recliner to eat all the snacks I bought at Au Bon Pain. In my opinion I should get them all because I ran like three miles of hallways in my crocs and they have to be gone when Jude wakes up and Don eats slow. Don reaches over and moves the bag, though, because he realizes I am stress eating and I will end up puking later. No one wants that.

I have mentioned before that I love infomercials. There are some good ones on tonight, one for cold plasma (eek) and Danny Aiello is helping to hawk it. I am not sure why I should buy face cream from someone who looks like a giant quivering pool of flesh with sunglasses. “Dr Perricone wants everyone who is concerned about their neck, chin, and décolleté to try this product.” Uh, who? Josh has never heard of him. “Don? Don?” Don stops telling Josh about Machinen Fest and looks at me. “Are we concerned about my décolleté?” Don and Josh look at each other. “I’m fine. This is distracting.”

They go back to talking but give me sideways glances every few minutes. Don says I get a little manic and irrational when I am worried about the boys. Since I am not screaming at anyone and I am sober, I consider this a victory. I am now bored with Dr. Perricone’s cold plasma and picturing what Danny Aiello might look like without it. I change the channel frantically until I get to..there it is! A shiver of joy runs through my body. It’s the medical instructional channel. Diabetics are measuring insulin and cutting up fruit! New mothers are bathing and nursing and burping their babies! Alex is cutting back salt and rewarding himself for his healthy lifestyle changes by going to a concert in the park!!

It’s mesmerizing. I love it. It’s all so methodical and makes so much sense. It’s 3 a.m. now. Don says we should sleep while Jude is sleeping. Josh has to go take care of other patients, but I know for a fact he’d rather be in here, with us. Who wouldn’t?

We turn the lights out, and the vecta is bubbling happily in the corner. The vecta is a giant sensory tube machine with colored lights and water and floating balls and fiber optics strings that change color. It follows Jude around the hospital wherever he goes. When groups of doctors come in the medical students are absolutely not paying attention, they are staring open mouthed at the vecta. Invariably one of them always asks if we brought it from home. The vecta is bigger than my car. It takes two child life therapists to wheel the thing around. Yeah spanky, I put it on the roof rack. How did you get into medical school, anyway?

I lay there awhile, trying not to think. I need a distraction, because I don’t like the way the next few days are shaping up. I lean over to Don in his plastic recliner for awhile and stare at him, like an inch from his face. He does not wake up and freak out like I want him to. I poke his ear with one finger. Nothing. I get up and open the door and look around for Josh. Sigh.

I have saved it until now. Everyone is sleeping. A girl has to have something to look forward to. I turn the tv on, but low, so I don’t wake Don and Jude up. I put the speaker thing for the tv up to my ear. There it is. Alex is lowering his blood pressure by checking labels and fixing a heart healthy meal….wait for it.. IN SPANISH!!! Sigh. Life is good. I’ll ask the surgeon about my décolleté tomorrow.

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Rescue Me

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Jude wants to go on a walk. We like to walk down by the lake, and the weather is nice, for once. It has been such a cold, nasty spring in Chicago. It makes me wonder whose idea it was to build a city here, for God’s sake. I used to say that all the time when I moved here from Alabama. Not to my family, though, because they wanted me to come home. My father would try to talk me into coming back. “The old Thomas place is up for sale. You could call it Jesus People South.” I would remind him that I felt called to serve the poor. He would offer to bring me the town drunk so I could tell him about Jesus “anytime you want, honey. Hell, he doesn’t have anything better to do.”

My father’s understanding of what I did up here in Chicago was always a little sketchy, but I have learned to love the city. When I moved to Uptown in the 80s, it was a burned out ghetto. Now there are Starbucks and condos, but there are still guys living underneath the underpass of Lakeshore Drive. They say hello as I push Jude’s wheelchair past them on the way to the dog beach, and keep their distance from Wash, who looks meaner than he is.

We can’t go down there, to the dog beach, because of the wheelchair, but we can sit up on the rocks. I have decided to bring Wash, even though Don told me not to. He was worried I couldn’t handle him if he decided to go all Cujo on some other dog. He does that, if he is on a leash. Wash saves my life which is threatened, on a daily basis, by Cocker Spaniels and Pomeranians. If he wasn’t there I’d be dead on the ground, a Pug feasting on my insides like a B movie zombie. Thank God Wash is here.

Don telling me I can’t handle something means for sure I am absolutely, without question going to do it. So we’re off, Wash’s leash hooked around the handle of the wheelchair. He trots along happily beside us, and so far we are safe from evil zombie pets that want to eat our spleens.

There are a lot of potholes on the way. Jude is 13 but he weighs 200 pounds and is over six feet tall. At different points my body is parralell to the ground as I try to push the stupid wheelchair over bumps and ridges on the way to the dog beach. Jude is freaking out about litter THERE IS A PIECE OF PAPER ON THE GROUND OH MY GOD SOMEONE CALL ROHM WE ARE ALL GOING TO DIE. That’s not what he says. He says, GET THE PAPER MAMA. I am so not chasing random garbage down the street. I have to draw the line somewhere.

We finally make it to the dog beach. Jude and I have spent many hours there, just watching the waves from the rock ledge and the dogs  chasing frisbees down below. Sigh. So nice and peaceful. Except, not so much, because Wash is determined we are going down there to interact badly with the other dogs and their owners.  Now. He is pulling with all of his might and making crazy desperate noises. Wash is a big dog. I am having trouble holding on to him.

I call Don, and tell him I need help. He doesn’t say I told you so, because he did that once, I think, maybe the second day we were married, and learned quickly to never, ever do that again. He has a pretty decent sense of self preservation. So I tell him to get down here, and he says he’ll be there in a few minutes. “Make it snappy, dude, this is way too much for me to handle.”

My husband is a very patient man.

After I hang up I drop the phone. It comes apart, like it does all the time, when I drop it, which is all the time. I put it back together. I am still holding on to Wash and Jude is yelling at passers by that they need haircuts! Yes! They all need haircuts! We are such a spectacle. I’m used to it.

I start coughing. Of course I didn’t bring my inhaler, that would have made way too much sense. I can’t breath. I might be dying. My lungs are collapsing. I have a pneumothrorax. Some guy might have to do a tracheotomy with a ball point pen. I go to call Don to tell him to bring one, or my inhaler, whichever is handier. Only my phone is dead. I forgot to put the battery back in. There it is, in the grass. Oh.

I try to open the phone to put the battery back in, but I can’t. It won’t open. No matter what I do. I try everything. Stupid smart phone. So I drop it, thinking it will come open like it always does. Nope. Suddenly it is a masterful piece of well made technology. I swear. And cough. I throw it again. and again.

Don walks up behind me while I am throwing my phone repeatedly on the ground and swearing. The dog is still whining and drooling and Jude is freaking out over paper.

I would like to to take this moment to share how much I have grown as a person over the last few years. In times past I may have yelled at Don, because apparently I have abandonment issues. Wendy the Counselor says that’s part of why I live communally. My friends say it’s why I drive them insane by trying to talk them out of going away for the weekend or truthfully, to the store. Whatever. Some of us don’t like to be alone. I do not yell at Don and tell him that if I had died it would have been HIS fault, because he walks too slowly and where the HELL has he been, and why did he let us get such a big dog?

I just stand there wheezing, and he takes my phone from me, and picks up the battery. He shows me, wordlessly, the tab on the top of the phone that opens it, and puts the battery back in, and hands it back to me.

“Daddy, you need a haircut!!” Jude says. Wash sees that the Alpha is here and sits down, panting. When I married Don, and his name was Groovy, and he wore black skinny jeans and had hair down to his waist, it wasn’t because he could fix everything. Now he is here, though, and things are magically set right. He smiles at me, and he has the nicest blue eyes, and I can breathe again, too. I make a mental note to teach him to do an emergency tracheotomy, just in case, and we head home.

Marry well, ladies. You never know when you might need tech assistance, a dog whisperer, and a respiratory therapist to meet you at the dog beach at a moment’s notice. Never underestimate the power of a patient, capable man who walks with a sense of purpose and if he was so inclined, could still rock a pair of super tight  midnight black skinny jeans.

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