Take Me to Your Leader

You can't push your tears back in. You can try, but the sadness will find its way, every time. That is what I want to teach Eden, and also myself. You can't make it go away, and it is the balance to joy, to laughing, which we have a lot of, but it gets mucked up without the yang of tears and heartbreak.  

At counseling we talked about Jude being in the hospital, and me being so upset that I couldn't speak, really. The family counselor asked Eden what that felt like for him. "Fine." 

So different than Sage and Jude. Sage expresses his feelings to everyone and everything with insight and eloquence, and I say everything because I have seen him filled with compassion to the point of tears for inanimate objects. No problems getting in touch with our emotions for Sage and me. And Jude, because when he is unhappy you can hear him in Nebraska. We are all out there.

Don and Eden are a different story. I am mystified by the reluctance to share, and the withdrawal that happens when I probe. So different. So strange. Like alien creatures, these people who pretend that they are not upset. Take me to your leader, I want to study your kind.

Counselor knows her stuff though, she presses, gently, and finally gets Eden to say what he is thinking.

"I was thinking," he says, staring at his Legos, that it was, (fingers to the eyes) my fault." 

I open my mouth to protest but the counselor holds up a hand. 

"Why is that, Eden?"

"Because I was glad he was gone so I couldn't hear him scream and we didn't have to watch Thomas all the time."  Now the tears come.  I get down on the floor with him. "I understand," I said. "Jude has been screaming a lot. I get tired of it too." Eden melts into my arms. 

The next day I ask him about it again. "Remember how you said you felt guilty when Jude was sick, that you felt like it was your fault?"

"Nope."

"Honey, yes you do. It was just yesterday."

"I forgot about that."

"Is there anything you want to say today?" I ask. He thinks a moment, then whispers in my ear.

"Sometimes I wish Jude didn't have autism".

"Me, too," I whisper back This is our secret, however openly kept, because we always try so hard to be cheerful, and grateful, and we are, and we do love Jude, and think he is awesome, but it is also as hard as hell sometimes, and we wish it was different.

Is that okay? Can we be sad and disappointed and frustrated and happy and joyful at the same time?

Well we are, and I guess it has to be okay, and I wonder if other families cry and laugh and love as much in one single day as we do. It has to be okay to for Eden to say he is mad, and tired, and wishes it was different. God knows our hearts, and he counts our tears, even if we try to push them back in with our fingers so no one else can see.

Trees and Leaves

It is my day to pick up Jude and take him to Special rec. Special Rec is a park district program for the developmentally disabled. Jude gets to go bowling, swimming, play tennis and apparently they are doing a production of Grease this year. Hmm. 

I stand outside the school and wait, watching the cute little kids with their backpacks file out and climb onto the busses. Suddenly there is a ruckus at the door and here comes Jude, barreling down the sidewalk, aid in tow. It is like watching someone trying to control a Great Dane. 

His teacher tells me today was okay, there was only one outburst, and that it wasn't so bad that they needed to call me. I spend most days praying not to hear the theme to the Exorcist, which is the school's ringtone. No news is good news as far as the school and I are concerned. I feel so helpless when they call and say he is tossing chairs and books around and screaming. No one knows why he does it, maybe not even Jude. 

"I hate it when Jude Hill throws things," he tells me in the car. I reach behind me and hold his hand, because clearly he feels helpless, too. Hurricanes blow in, and then they leave again, and things get broken and lost. All you can do is hunker down and pray.

It is a blustery fall day, and we drive down side streets to the park. Leaves are falling all around, and they crunch as we walk towers the park. Jude stops and watches a squirrel, who climbs up on a tree and looks at us expectantly. "Hi squirrel," Jude says. "Jude Hill is walking in some leaves." The squirrel is unimpressed, and we continue on our way. I consider just spending the afternoon with Jude on the playground, but for the sake of consistency I decide we need to stick with the plan. Jude reminds me he wants to be a butterfly for Halloween. "Caterpillars turn into butterflies!" he yells, running into the park house.

Jude leads the way, down the stairs into the basement room where adults and kids are painting posters for the Grease production. I am not sure if Jude will be okay with me leaving or not. I sign his name and when I look up, he and Amy, the nice instructor are painting. She waves and I head out the door.

I should be happy, I have two whole hours to write and drink coffee, but I look back several times and listen for yelling. I get in the car and pull away. At the stoplight down the street a short school bus pulls up next to me, and a round face with glasses smiles down at me and a chubby hand waves. I wave back and burst into tears. Jude is not the only one with mysterious feelings that seemingly blow in from freaking nowhere. 

It isn't as if I have never left my boys before. Preschool, dates, camp, rare weekends away with my husband have all stirred up anxious tears. When I get to the coffee place I grab a house blend and sit in the back. What the hell is wrong with me?

I am jealous of Amy, and everyone else who gets to spend the whole day with Jude. I used to be the only one who understood him and his needs, and now he has experiences that do not include me. Jude, like Sage and Eden, is growing apart from me, as he should. I just am not used to letting go of the one who clings to me so tightly. I thought I had more time. How is that for selfish? I was mostly okay with my son being a mystery, a beautiful enigma that unravels itself at its own pace. Happy to sit and watch while it all unfolds. Maybe I just want to share this afternoon with someone who sees the excruciating wonder of a yellow leaf falling from the sky. No one else I know does a happy dance over leaves in the wind or greets dumpsters with a happy shout.

At a Bible study last week my friend was talking about trees. When they look all bare, when all the leaves have fallen off and there they are, all stark and naked, that there is really so much life underneath, mysteries going on just beneath the surface, getting ready for spring and brand new life. It is hard to picture on this dark windy day, but I will have a little faith, I guess, that good things are happening even when I can't quite see it. Jude is growing and learning and enjoying all sorts of new things even if I am not standing right there. He won't be able to tell me about his afternoon with Amy, but I guess that is okay. Oh well. I love a good mystery. I really do.

Columbus Day

Driving is fun. We have to yell, yell out everything we see, the trains and the stop signs and the COLOR OF THE DUMPSTERS. A BLUE ONE MAMA and I cannot hear the radio. There are taxis and white vans and some stores we like, mattress stores for some reason and green means go, time to go, come on let's go.

Today is perfect, it is October but it is warm, leaves blowing across the streets and the trees have turned to that yellow gold Chicago color that combined with black branches means cold is coming, it is on its way.

We are headed to the woods, the forest preserves, with all the boys, one friend and Grandma. We have no plan except to walk around in the leaves and breathe, it is a good plan, we all just want some sun and a little time away from tv and the loudness of our house with what, like a hundred families in it. Let's walk and breathe. God it feels good.

Jude is out and down the hill before we can stop him so we follow, he is on his way to the river, or the piddly branch of it that runs through these woods. We walk run past dogs, people on bikes and what looks like a wedding reception on our way to the trees that guard the murky water. We know now that there will be no wildlife because Jude is crashing through the leaves like a big hungover moose so everything with even a little sense of self preservation will be long gone by the time we reach the treeline.

Sage is doing his best to keep up, I am watching him from the corner of my eye, worried about his ankles but pleased he is here, not at home playing Halo. His hair shines golden in the sun, and I realize with a shock that he is handsome, not just cute, and he is a teenager, not a child. Don helps Grandma over some tree roots and we are there, at the water, the mighty Chicago river, and there is a lawn chair and some beer cans. This is so, us, this trip, all this hoopla and chaos to get to some place that is somewhat less than epic but we are okay with that and pick up rocks and stuff to throw in the river.

Eden and Matthew are just on the edge, and I yell at them to step back and they start climbing a tree. There is a smell and I spend a few minutes contemplating calling the state troopers or the Doe Network but Don catches my eye and shakes his head. "Raccoon." God we are so married.

On the way home we get ice cream, and Jude is quiet now, with his head against the window, watching the world zip by, the world that fills him with wonder and fear and makes not so much sense to him but he is going to see it anyway, this beautiful boy, on this beautiful day, and there are leaves in my hair and mud on my shoes but we are good, all good, just for today, this moment, we are good.

Storm Clouds and the Cloths of Heaven

It has been nice here, by the lake. We have been swimming, fishing, grilling, and watching frogs and groundhogs and owls at night. Crickets and sunsets, that sort of thing.

A storm was brewing, though, and when the barometer drops my son's head starts throbbing and scraping the inside of his skull, like an animal that wants out. Sometimes it takes us an hour of screaming, tantrums. flailing, to figure out what is wrong. Then we turn the lights out and lie close to him, waiting for him to sleep.

He likes to hear poetry, so I read it. Anne Sexton, Emily Dickinson, John Updike, Yeats. He Wishes for the Cloths of Heaven. We read that one a lot.

The six year old comes in and out of the darkened room, because he can. We used to close the door, but the family counselor has asked us to 'meet the needs of the family in the context of the family,' in other words, don't lock the other kids out while you disappear into the one child seems to need you. So Eden climbs on the bed and kisses his brother on the forehead. He looks me and asks, "why do we all feel so bad when Jude is upset?"

"Because we wish we could fix it, and we can't," I say, because I have no good answers, except that love hurts, and I am sorry about that, truly I am. He wants to know why the room is dark. I explain that the type of headache Jude has makes light painful to him. In fact, the world is always just  a little too loud, a little too bright for Jude.

"You can just say migraine. I know what that is."  With that he is gone.

I can still here the thunder outside, rumbling off in the distance. I do wish I could fix it, bear the pain like Jesus, but I am not Jesus, just a mom with no super powers, just love and some wishes. It seems so lacking, as strongly as I feel, it seems like I could move a mountain, but all I can do is wait for it to end.

I read to him some more, not sure what he understands besides the sound of my voice. I wish for the cloths of heaven, but I am poor, so I lay my cloths down right here. It is raining now, and he is asleep. Tread lightly, my love, I whisper,

for you tread upon my dreams. 

Love, Longing, and Dumspters

Jude likes dumpsters. He has them memorized, which ones are where, what color they are, what numbers are on the side.  A trip to the park begins with a run to the alley side, through the fence, and a dumpster announcement. "It's a BLUE one! And it's FRIENDLY!" We have never encountered an unfriendly dumpster, and hopefully never will.

Dumpster spotting is easy from the el, Jude announces them all along the Red Line. Sheridan, Addison, Belmont, we know where they are, they can't hide from us. We shout them out so everyone can hear.

Yesterday we went on a dumpster tour of Uptown. Down Wilson, over to Hazel, Eastwood. We approach the Habitat for Humanity townhouses next to the free clinic. The kids playing out front stop and stare. "Can we look at your dumpsters?" I ask, trying not to look creepy. The kids look at Jude, who is flapping and giggling with excitement, and back to me. They nod slowly, and then book it into the house.

As we  stand in the parking lot, Jude patting the dumpster like a beloved pet, I see the curtains flutter in the upstairs window and realize mom has been informed of Weird People on the Premises. I give a little wave, and the curtains close. Time to go.

There is one last dumpster we must see, but we cannot touch it, it lies behind a gate that only opens when the nice cars of the condominium owners, the brave but fearful pioneers that come with gentrification arrive home from work. This is the unattainable, the Holy Grail, and Jude presses his face against the bars with unrequited love and longing. I press my face against the bars. too, trying to see what he sees, with longing not for the dumpster but for my son, this mystery that unfolds far too slowly for my taste, a little piece at a time.

"Why do you like it so much?" I ask, not expecting an answer. "It's beautiful," says Jude.

An SUV honks and we step aside. The gate closes and we turn and head towards home, willing to let some things remain a mystery for now, but someday we will get to touch that dumpster. Until then, we will be patient, and admire the beauty from afar.

Enough

Enough 

it is night, a purple dark

with shades of navy blue

and there is water

dripping in the alley 

you are breathing

a giggle

and your hand waves in its own celebration of what is inside 

and I rest my hand on your chestFeel it moveWith just my fingers 

and smell the sweet yeast of your shirt 

if I close my eyes you are a baby Gentle and malleable and soft

and you smile But now there is  tinsel And it surrounds a white patch In my heart

and I need to fill it in With a marker or some felt

so no one falls in but you are here 

and I am not sure if I broke you 

or if you grew away

because I did not twist the tendrilsIn the right direction 

this is what we have in this blue dark nightAnd it may be enoughIf we decide it is

and we do

Lottery

My son flaps his hands and bellows at the television

Shouting out his own poetry

Words that mixed inside his head

pop out at random 

like lottery balls

they create a picture 

in the afternoon light

This is not what we had planned

yet it has its own beauty

like plastic bags in the wind

or tears on the eyelashes 

of a child when his birthday is done

Lost Time

These have been anxious days, the sort that make me cling tight. The summer brings back memories, memories of loss and things gone wrong. Heat shimmers and I think of a newborn in the hospital and my father's grave with the red dirt turned up and hats off on a dusty road to the cemetery. So many tears shed in the summer heat.

Jude's medicine is making him sick. We were trying to help, help the anxiety and obsession and the no sleeping that comes with this unwelcome gift called autism. So far no medicine has been worth the side effects, the shaking, the dull eyes, the sleeping all day. I feel caught in the worst conundrum, treating my son like a recipe that just needs tweaking or leaving him with anxiety he cannot bear.

We were back in the ER last night, and they had to take blood. The nurse was filled with compassion because he, too, has a child with autism and understands not being able to fix the abject terror that overcomes someone who cannot sort out your words or make sense of your facial expressions. Don knows I cannot stay, so he tells me to go and I am not quite down the hall when the screaming begins.

The chapel is empty and I move past the quilts filled with the names of babies parents only got to hold once, past the religious pamphlets and sheets of paper with comforting scriptures on them. I find the book where people write their prayers, their pleadings, and write HELP ME GIVE HIM BACK TO YOU. I flip through this big book of sorrows, and see where I wrote the same thing twice last year.

This love, this clinging, desperate guilty love, is doing us no good. Jude has a life to live, a good one, if I can release him to it, and if I love him more than myself, he has some beautiful damn stuff in store. He isn't here to meet my needs, but to fulfill his own purpose, one that belongs only to him. Holding him to me won't fix whatever went wrong, whatever hurt his brain. The smartest doctors in the world can't explain it to me, nor can they convince me it isn't my fault, that I didn't break him somehow.

I remember my father hanging on in a fitful coma for days after his heart attack, and me, barely out of my teens, whispering in his ear that I would be okay. It was an act of unselfishness, I wanted to beg him, no, don't go, stay, please I need more, but I let him go. And he left.

When we got home Jude curled up on the couch next to our bed. I sat next to him and held his hand. "Do you remember," I ask, "when you had no words? And Mama prayed to hear your voice?"

"We are making up for lost time, Mama," Jude says, clear as day, and this moment of clarity shocks me, and yes, God yes, we have lost time, time lost clinging and not trusting, time lost to fear and selfishness.
No more clinging, just letting go, and maybe a little dancing, and running, and maybe a little waving goodbye.

Hold Me

If he would just stop, stop screaming, stop throwing things, stop struggling, just for a moment, I could hold him, I could rock him, I could whisper in his ear that he is okay, I love him I'm not mad, just let me hold you and smell your hair and it will be alright.

The medicine that was supposed to bring sleep has done the opposite. Jude is flinging himself against the wall and shouting at the top of his lungs. Sleep. god, we just want sleep. it has been so long since we have had sleep or even a moment to breathe, just to be.

Have you ever been tubing?  A boat pulls you through the water while you hang on to an inner tube, bouncing and twisting and hitting the water while you cling for dear life. That is what this week has felt like.

Last night while Jude was screaming and tossing his (and our) things about I went and sat in the kitchen. Eden came and asked if he could tell me a secret. He whispered in my ear that sometime he gets mad at Jude.

Me too, I told him. Then he whispered that sometime, just sometimes, he wished that Jude didn't have autism.

I hugged him and cried silently, and Rachel walked by and noticed I was crying and brought me some tea, and eventually Jude calmed down and I lay next to him, kissing his head and telling him it is okay to be angry, but please don't break stuff, and he sniffles and says sorry, sorry, I'm sorry Mama. Jude Hill was afraid of the parts. What parts? I wish I knew.

He falls asleep and I pray, silently, and try very hard to just stop flailing, stop struggling, stop fighting, and let the lover of my soul comfort me, and tell me everything is okay, and it will all be alright.

Mausferatu

Don has a migraine again. Every Saturday. I wish we could figure out what we did on Friday that makes him incapacitated every Saturday morning. That’s it. No more fun on Friday night. Apparently, diet soda and medical shows are harmful to your health.

So I get up with the boys, who are hungry, well two of them, anyway, Sage is sleeping in like a good adolescent. I make eggs and pop tarts and we play ball in the yard, and Gramma, bless her soul, has made me coffee, which will help me get through the next hour anyway.

When Don gets up I ask him to wake Sage so I can do his infusion. Every day Sage has to wake up and put a needle in his arm and we put back what genetics denied us, Von Willebrand’s factor and some factor eight. It is a hard thing to wake up to, but he’s gotta have his Vitamin VWD so he can move around somewhat normally. It is just what hemophiliacs do but we are new to this and while I do not blame Sage for the drama that ensues I have to be mean, very mean and make him do it.

Somehow we get it done and Sage and Eden are off to bass and ‘Making Monsters Art Class,’ respectively, and Daddy takes them because Mama does not wish to lug the amp.

Gotta love scholarships and sliding scales. Now my kids are enriched. They leave and I turn to Jude. He has a look in his eyes that tells me he has plans, probably for shredding paper or throwing stuffed animals out the window, but he and I are going to do flashcards because  Emily the autism expert told us we have to learn about a hundred sight words. She gave us a list at the open house Thursday night. I am committed to getting it done for my son’s education and his future, and because I want to redeem our family image after Jude shouted MY UNDERWEAR IS ON BACKWARDS at the top of his lungs during the principal’s speech.

Jude is looking at the ceiling, not his flashcards, and I have to figure out what he is looking at and get his attention or he will never learn to read for God’s sake, so I get behind him and look up. There, hanging from the light fixture, is a little brown blob.

"Hamster!" says Jude.

Actually, it is a bat. I am thrilled and I yell for my neighbor Tom and get a bin. Tom bumps the bat into the bin with the lid while I yell around about rabies. Tom snaps the lid and hands it to me. 

This bat is the cutest thing I have ever seen. He is about the size of a chicken thigh, reddish brown and he stumbles around the bin, looking like I felt this morning.  I am in love.

"Hamster!" Says Jude.

When Don gets home he feeds him some water with a syringe and Sage tries to convince us that we could keep the bat, really, he needs a home, it would be educational and we have snakes a bat isn’t that much more exotic? This turns into wailing and freaking out when we say we are calling Bat Rescue. I get on the computer, and wow, there is really a couple that rescues bats in Humboldt Park, so we all pile in the car to take Mausferatu to someone who can nurse him back to health. 

We find the place okay, way on the West Side past the groovy neighborhoods on the Near West Side. This place still has some personality to it and the guy who takes our package says that he is a red bat, and that he will take good care of him. Sage says goodbye and to our relief does not reenact the scene from The Yearling.We go to a local park so Jude and Eden can run off steam, and there are older kids there, smoking and swearing and trying to get pregnant with their clothes on. I think I prefer this to the condo moms with the fertility strollers that have invaded my neighborhood. Don points out that there is very little gun violence among those who drink Evian and buy organic, but I still like being in a place untouched by gentrification, just for a little while.

"Goodbye, Hamster!" says Jude.

We get in the car and ride home, it is dark now, and we are riding through the trendy neighborhoods again, stopping to let gaggles of college kids across the street. We pass open bars and patios and lights strung across the darkness. I remember when I was that age, and I had come to Chicago to help the homeless and save souls, my own most of all, and we would stand outside the bars and the shows with flyers explaining salvation and invitations to church and our coffee house.  I felt fine with the winos and prostitutes back in our neighborhood but the kids my own age, drinking beer, laughing, dating whoever they wanted, that got inside my head. I would never admit it, but I felt the pull of the world, what was shallow, easy, fun, it called to me. I would stand on the sidewalk and close my eyes and let the throng wash over me, not touching me. Please God, I would pray. Help me stay on this path. Just help me stay on this path. 

That was when I was eighteen, and now I am forty, moving through the night in a beat up van, listening to the delta blues on NPR. This music touches something in Jude, and he starts to call out in the dark, loudly, singing along with the blues, and it is beautiful, and I take my husband’s hand, and it is all good, so good, all the heartbreak and joy and sorrow and love, and I am loving this path, this wonderful path, and nothing could make me stray from it, this long and bumpy trail. It is our story, a very good story, and I want to see how it ends.