tag:blogger.com,1999:blog-49930774572543617842024-02-20T09:18:10.347-06:00The Velveteen HamsterRebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-4993077457254361784.post-78051864028251076662011-07-13T18:36:00.000-05:002011-07-13T18:36:21.414-05:00Rumble<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">The trains go rumbling by, and Jude and I are right underneath, me sitting behind him with my arms around his waist. He hears them long before I do, and announces they are coming with the flapping of his hands.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">In front of us is the park. I used to take Sage and Jude here when they were small, and the people there now with their kids remind me of my former self, all smug and superior with my high parenting standards and brand new double stroller. They talk to their children in a way that tells me they read a lot of parenting magazines, and it makes me smile to myself. I like not having to do it just right, and enjoying what is.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">Behind us is the dog park. The owners in there sound very much like the parents across the way. I am not sure what that means but it makes me smile, too.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">It is a sweltering July evening. It reminds me of Alabama, all humid and green, and I can smell the grass and Jude's hair and I am overcome, but not sure why. I squeeze him tight and say, "When I was a little girl I lived in this place called Alabama and I had a dog and a yard and I would run around and look for bugs, and I was sad, very sad because I didn't know God would give me someone like you…." and I stop, realizing Jude doesn't understand, as far as I know, or maybe he does.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"This is the part of the day that is just for you," Jude says, and I know exactly what he means. The train comes and we can feel the rumble, inside of us and on the sidewalk where we sit, under the big metal tracks, with grass all around, so close we are like one person, with no need for words, just this part of the day, just now.</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com2tag:blogger.com,1999:blog-4993077457254361784.post-11392609448927325202011-05-28T23:19:00.000-05:002011-05-28T23:19:51.946-05:00Date Night<div dir="ltr" style="text-align: left;" trbidi="on">We have a respite care worker now, which means we have Gretchan, our friend's daughter, to come and watch the kids while we go on a date. Four hours to do what we want. Go out to eat. See a movie. Drink coffee. Heaven.<br />
<br />
We head out to Heartland Cafe, a favorite haunt in our younger days, we haven't been there in years, we used to go there when we had no money and linger over two cups of community coffee for hours and watch the hippies come and go. Now we have a little more money, and we get dinner. which is too rich for my post surgical stomach, so I do the accidental bulimic thing in the ladies. I come out with red eyes and smile at Don, and he winks at me. Romantic, in a Hill family sort of way.<br />
<br />
We get in the car and start driving, unsure of where to go or what to do. We drive out to Northerly Island, look at the water, turn around and drive back. We get cups of coffee and wander around in a Walgreens, looking at stuff, holding hands. We realize that we are, once again, being followed by the store security. Honestly, if we were planning a life of crime, would we look like this? Wouldn't we try to like, blend?<br />
<br />
We get back in the car and Don drives through the foggy spring night, and I curl up in the seat and doze, in and out, feeling like I am driving at night with my parents, safe, knowing that it is all taken care of. A song that sounds like a lullaby plays on the radio. It is nice to let it go, the vigilance that rules me, keeps me on my toes and makes it impossible to relax and be with my husband, my lover, my friend, just be. I can feel it washing over me like the fog, and flying away.<br />
<br />
When we get home the boys are sleeping, except for Sage, who is watching a movie about Zombies, and<br />
Gretchan wants to know what we did, and I hesitate, what do I say, I threw up at a vegetarian cafe and we went to Walgreens and drove around? I just tell her that we enjoyed being together, just the two of us, and this is true, and she says goodnight. I sit down on the couch and Jude comes in, sleepy, and lays his head in my lap, and I smile at my husband, my lover, my friend, and think that life is good, very good, and he smiles back, and I lean back and close my eyes and let it all wash over me, and it is perfect in a way that I forgot it could be. Just tonight, we can rest, and know that we are beautiful, and it is good.<br />
<br />
<br />
</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com1tag:blogger.com,1999:blog-4993077457254361784.post-79397034869793617272011-05-18T14:36:00.000-05:002011-05-18T14:36:09.541-05:00Chin<div dir="ltr" style="text-align: left;" trbidi="on"><br />
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">I have been told that I need to find a way to be okay even if my children are not. I am too enmeshed, whatever that is. How separate should I be? Should I stand here? Move back this far? How about here?</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">Yeah, it's true. If Jude is having a good day, I am having a good day. If Jude is screaming, coming undone, shattered, so am I. If Eden has a bleed, if Sage is in pain, my thoughts and conversations revolve around ice packs and synovial damage. </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">My kids are relatively healthy and happy today, so I am too. I have been told repeatedly that I need to find a way to be okay when they are not. I am sure I can shut down that part of me that grieves anew every time Eden is limping because his ankle is destroying itself a little at a time, but do I want to? Even if I could, I am not sure that should be a goal.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;"> I have a hard time believing that it is healthy for me to be cheerful and pleasant and talk about shopping or Oprah or whatever when my child is suffering. My gut tells me I need to feel it. Don't wanna pretend it's okay. Because, sorry, after all these years, it still. isn't. okay. that my child. hurts. I spent years is a drug/achohol/simple carbohydrate haze, not feeling anything if I could avoid it. I feel strong enough to take it, like a man. On the chin. I get knocked on my ass, but I get back up, lower my center of gravity, and take a deep breath. Ready. Go.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">This life is short. Pain and anguish are a part of it. I will laugh my head off today, cry, yell at someone, shake my fist at the heavens and get down on my knees and pray. Sorry if my pain is hard for you to watch. Would it be easier if we were separated by a tv screen and there were commercial breaks? Then you could turn it off when it got too much. What sort of message do I send to my children when I insist that things are fine when they are not? It is a message of faith, really, that if I fall apart, come undone, someone waits with loving hands to hold me and put me back together. </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">The reality is, life is painful. Life is also beautiful, and terrifying, ugly and sweet. I can beat my chest and scream at the heavens and know that God is listening and that He has blessed me beyond belief and I have no right to question Him. He gets me, and can stand to see me in pain. There is no shadow or shifting, no pretending, and He will not turn away. Ever.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">So I am here, warts, angst, hairy legs and all. Hold the fabric softener, the ativan, the cosmetic surgery and the twinkies. I plan to stand firm, experience it all, and take it right on the chin. And when I fall over, and can't get up, well, that is okay, too. I have back up. I'm good.</div></div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com1tag:blogger.com,1999:blog-4993077457254361784.post-79216673829563209002011-04-11T15:48:00.001-05:002011-04-12T16:25:26.260-05:00Time to Heal<div dir="ltr" style="text-align: left;" trbidi="on">Spring is bleed season. Eden falls, he gets bumped, and he runs around until the spaces between his ankle bones begin to fill with blood. It happens every year when the weather gets warm.<br />
<br />
Eden is so unlike Sage. Sage would get a hint of a scrape and happily go to bed for several days. No injury ever went unnoticed or unattended. Eden is different. He keeps going, cheerfully, until someone notices he is limping.<br />
<br />
He was two when his ankle first betrayed him, bleeding and swelling, and he limped along happily, and I could not get him to sit down and rest. His ankle has never been the same, and it flares up sometimes, like today.<br />
<br />
He is like that emotionally, too, happily moving along, content with his allotment of attention, which is a somewhat smaller portion than his brothers, especially Jude, who is consuming. I am consumed. I wish I could find balance, but it is almost impossible. Sometimes Eden and I sneak off like secret lovers to read books and draw things, but sometimes the day has gotten away and he is in bed before I know it, and another day of his childhood has slipped through my hands.<br />
<br />
Today his ankle is doing its thing, swollen and red and painful. I saw him limping on the way out the door to a friend's house, and now we are on the couch together, trying to hold still, trying not to bleed or hurt too much. If we are very still we can taste what love is, and know our hearts, and see the sun filter through the curtains, and remember that we love each other, and hold today, just this hour inside our hearts. This is serious business, and our job today is to admit we are hurting, and let the healing begin.</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com3tag:blogger.com,1999:blog-4993077457254361784.post-33340432895430737662011-04-05T01:05:00.000-05:002011-04-05T01:05:28.777-05:00Starman<div dir="ltr" style="text-align: left;" trbidi="on"><i>There's a starman, waiting in the sky, he'd like to come and meet us, but he thinks he'd blow our minds</i>...<br />
<br />
Jude has new clothes. He should be pleased, or indifferent. New clothes are different, though, so it freaks him out. Deeply. "Jude Hills don't like different" he informs me. This has created so much anxiety for him that he will not let me out of his sight.<br />
<br />
So I am on the couch, and he is on a sleeping bag on the floor, asking me every three minutes if I will stay. "Stay, Mama." Okay, I will stay. Bowie is coming through the headphones and Eden has come in and laid his head in my lap. Sage sleeps next door, tossing in his angst of voice cracking hormones and earnestness that breaks my heart. Was I ever that innocent?<br />
<br />
Bowie reminds me of when I was that age, smoking Kools snuck from my mother's purse and listening to Starman behind the garage. I never did anything right, not one freaking thing. Flunking out of school, drinking, dating a guy my parents hated, being a smartass in general. I wished they liked me, but I was unwilling to give in and stop acting as if I did not care.<br />
<br />
Menthol burned my lungs and I could see my neighbor puttering around his yard. I hated everything about this life, big brick houses and no sidewalks. Doctors and lawyers lived in those houses and they were all miserable as far as I could see. I wanted to run away, go to Amsterdam, marry a rock star, live on a farm, become a gypsy or follow the Grateful Dead.<br />
<br />
Here I am, sitting in the dark, listening to Bowie, Starman in fact, but I am not smoking and not quite so lost. There is a red headed boy snoring in my lap and a voice saying, stay, stay... and these things belong to me, a gift from someone who saw me sitting by the garage in the cold, alone, smoking and wondering if I would ever, ever love or be loved. I wish I could go back and tell my smoking sad self that love was waiting, and not to be afraid. I want to go into my son's room and tell him that good things await, good things are on their way, but I don't, because he has to find them himself, and he is not me, not by a long shot.<br />
<br />
I never followed the Dead, never went to Amsterdam, never lived on a farm, but I don't live in the burbs, and my life has meaning and purpose, and has been full of wonder and friendship and laughter and music and joy. Good things for sure. My boundaries have been set in pleasant places, because I am loved, by someone who was watching, waiting, and had good things in store, good things for me to find.<br />
I think Jude is asleep, and I can crawl in to bed with someone I love and who loves me best of all, and dream for my sons, dreams where they walk and uncover all sort of love and good things that they never even knew they wanted, finding gifts that were waiting all along.</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com2tag:blogger.com,1999:blog-4993077457254361784.post-61807777464595893052011-03-29T15:33:00.000-05:002011-03-29T15:33:46.879-05:00Dust<div dir="ltr" style="text-align: left;" trbidi="on">I was not kept safe as a child. My parents had their own pain and issues, and they unintentionally let really bad things happen to me. Really, really bad things. This is important to understanding what drives me as a parent, as a human being. All that I do, every breath, every waking thought, every restless dream, is about keeping my children safe. The idea of not being able to take care of them, of being forced to somehow abandon them, is the stuff of nightmares, and my reality, for my boys have painful conditions that I cannot fix. These issues raise their ugly heads and scrape against the wounds of my childhood, and I face the monster. I am Alice and I battle the the Jabberwocky. <div><br />
</div><div>It is called hypervigilance, this condition of mine, and it is common to people who have been abused or traumatized. A close friend was horribly abused by a stepparent, while other family members looked the other way. She was unprepared for the blinding white fury that enveloped her when someone even looked at her child the wrong way. The dreams, the irrational fears. I could have told her. </div><div><br />
</div><div>You swear to yourself your child will never hurt the way you have. You swear they will be safe. You have no idea that this is just not possible, that you are taking your own inner child and giving them life and legs to walk away. Fierce love not withstanding, you are screwed.</div><div><br />
</div><div>Jude started having headaches before we left for New York. He would scream, claw at his face, bang his head. All I could do is sit in the dark and pray. I always pray. The only thing that ever got me through the Sophie's choices, the hell, watching my kids in agony, emotional and physical, was praying. Belief that God is good, no matter what. My one true thing, God has always been my one true thing.</div><div><br />
</div><div>We thought the long road trip would be good for Jude, my very best traveler. Like many autistic children he loves transportation of any kind, and loves scenery. COWS! CARS! TRUCKS! TRAINS! Jude's sense of wonder makes traveling a joy. Off we go. Christmas in New York with my sister and her family.</div><div><br />
</div><div>We stop overnight in Pennsylvania. At the breakfast buffet we eat pancakes and mingle with the locals, Don announces it is time to head upstairs, grab our stuff and go. We get to the hotel room and I ask Don where Jude is. He looks at me, blinking. The worst sentence in parenting: <i>I thought he was with you</i>.</div><div><br />
</div><div>Don books downstairs like lightening and I fall face down on the hotel bed. Eden climbs on my back and is patting me, saying, "It's okay, he's okay," and Sage kneels down by my face, whispering that it's okay, Jude is fine. Laughing a little at me, like his Dad does. My neurosis is cute, I guess.</div><div><br />
</div><div>Don and Jude show up, Jude flapping his excitement at the elevator ride. "He was still sitting on the couch, watching the Today show," Don reports. I go in the bathroom and run the water and take deep breaths. When I come out Don gives me a hug. He knows. </div><div><br />
</div><div>Back home the headaches continue. They get worse, and then finally a headache comes and just moves in like an unwanted guest that just won't take the hint. We can't figure out why our beloved nuerologist won't return our calls. </div><div><br />
</div><div>Then we see his face on the news. He has been arrested in a drugs for sex scheme. No. Freaking. Way.</div><div><br />
</div><div>ER visits. Each time they give Jude medication and oxygen, stop the vomiting, and he gets better, and we go home, and he wakes up screaming. We have no nuerologist. The other child nuerologists are booked. I am furious, with everyone, including God. Jude is the ultimate innocent. Why should he suffer? It is an enemy I cannot see, cannot fight. The light hurts him, soft sounds hurt him, and I cannot make it go away.</div><div><br />
</div><div>I tell myself that Jude has his own path with God, and that might include suffering, and I have to let go to the God I know that loves him, more than I do.</div><div><br />
</div><div>I am not God.</div><div>I am not.</div><div><br />
</div><div>The new nuerologist, who has pissed me off by suggesting that Jude is genetically retarded, and also by not being our old nuerologist, who has pissed me off by letting his personal issues interfere with my child's needs, wants to admit Jude, put him under, and do a lumbar puncture, and a MRI, and a dye scan of his brain. The thinking now is that Jude either has a venous malformation, which can be painful and deadly, or pseudotumor cerebri, which requires a shunt.</div><div><br />
</div><div>The best thing it could be is a brain tumor.</div><div>Shit.</div><div><br />
</div><div>Twenty days. I had a migriane once. For a day. I thought I would go insane.</div><div>Jude has had a migraine for twenty days.</div><div><br />
</div><div>The procedure goes well, except that they cannot get a vein, and have to put an IV in his foot. I cry when they put him under, and make every single person in the room swear they will take care of my baby. He is the size of a grown man, tall and husky, taller than me, but he is my baby. He still loves Elmo and Barney. He is innocent, and has no guile. He needs me. I force myself to walk away. </div><div><br />
</div><div>Breathe. Walk away.</div><div><br />
</div><div>Jude is back up in his room. The tests are all normal. Which is good. Only, why the hell is he still in pain? No one knows. I go home to see Sage and Eden. Take a shower. Eat. Pray.</div><div><br />
</div><div>On the way back I watch all the other cars on their way home, people going about their normal lives, their normal expectations, that everything will be okay. I know better, I always have. It is silly for me to imagine that their lives are untouched by evil, sadness, addiction, betrayal, sorrow. I feel as if I have been singled out, to be scraped along the pavement of life until I am bare and have no illusions left, no promises, no dreams. </div><div><br />
</div><div>John calls me, and I sit in the parking lot chatting, telling stories about inept residents who find themselves on the wrong side of my dual personality. I ask him, will I ever get used to it. Ever? </div><div>He is quiet.</div><div><br />
</div><div>I ask him if everyone at his house is okay. No, he tells me, because his little girl still has CF. He knows he can say that to me, because he knows I wake up every morning hoping it isn't true, that my boys are okay, they are healthy, we are all okay.</div><div><br />
</div><div>Like cold water on your face, the realization that it never is. Then the day begins, trying to find a way to be okay with that. I wonder if he ever just wants to scream and kick and come undone. That makes more sense, in a way, than getting on with your day and going to work and doing the dishes. It is like a type of insanity forced upon us, John, that we have to pretend it is okay.</div><div><br />
</div><div>I don't say that, though, I tell him I miss him, and Jamie, and can we please get together soon? Even if it is hard to look at one another, because we recognize the pain behind each other's eyes? Can we drink coffee and laugh about stupid pranks and people we used to know?</div><div><br />
</div><div>Yeah, he says, to the coffee part, anyway, because that is the only part I said.</div><div><br />
</div><div>Walking across the pedway I see the anesthesiologist fellow, and he smiles and tells me Jude is doing fine, don't worry, he is fine. I am feeling a little better as I walk down the hallway leading to the children's unit. A security guard walks in front of me, and holds the door for me. He is joined by two other security guards, and they are walking with a sense of purpose, heading down the hall.</div><div><br />
</div><div>Don't turn right, I say. Please. Don't turn right.</div><div><br />
</div><div>They turn right, right into Jude's room. Only then do I hear the screaming, and notice the broken chairs in the hallway. No.</div><div><br />
</div><div>I walk in to his room and see Don holding him down while restraints are strapped on him. I begin screaming that no one who is not a doctor is allowed to touch my son, and something about God punishing whoever does, and Don and I are hustled out of the room.</div><div><br />
</div><div>Don collapses on the floor, sobbing. </div><div><br />
</div><div>Apparently Jude has had a psychotic reaction to the anesthesia. He is to be transferred to the psych unit. He is in restraints, chemical and physical. He can't be untied until he calms down. Only, doctor, please, he can't calm down until you untie him.</div><div> </div><div>I am a lawyer's daughter, I am. I can talk a snake out of its skin. I can convince anyone of anything, and I am relentless. One arm? Can you free one arm? Jude is okay with one arm, and then we release two. The haldol is working. One foot? The resident, who is young, and cocky, but tired, and frightened, sighs, and says okay. </div><div><br />
</div><div>Jude sleeps.</div><div><br />
</div><div>I know what they are doing. They are going to transfer him to the psych floor. We cannot be with him on the psych floor. We hate the psych floor. You don't understand, I tell them. He will think he is being punished. I can't leave him. I can't do it. He needs me. He is sick, he needs his mama. Please. </div><div><br />
</div><div>I go and stand outside. It is snowing. </div><div><br />
</div><div>Please.</div><div><br />
</div><div>Victor comes. He is not your typical looking pastor. Long grey hair, windbreaker, sneakers. I cling to him, as if he can keep me from drowning. It is all I have, I tell him. All I have is my belief that God is good, and there is some sort of plan, That is my sanity, that is it. If I lose that, I am gone. </div><div><br />
</div><div>I can't pray, I tell him. It is like a dirty secret. I always pray. I can't pray, so you all have to pray for me. Believe it for me. No mustard seed, no nothing. Gone. </div><div><br />
</div><div>He reminds me of the men who lowered their friend through the roof to see Jesus so he could be healed. </div><div>He couldn't do it himself, his friends had faith for him.</div><div><br />
</div><div>I sob. I cry so hard it hurts. God it hurts.</div><div><br />
</div><div><br />
</div><div>We have to wait for a bed downstairs. I can't sign the papers. Don has to. I can't do it. One of the nurses will stay with us for the night. He asked if he could be with us. He took care of Eden in ICU once. but I don't remember him. He remembers us. He is a Christian, his dad is a pastor. He is lovely, and he and Don talk about God while I stare at Jude. He is like an angel, this man, standing vigil. I keep thinking he might by shining, but that is the light from the hallway. Jude sleeps. He just sleeps, and I stand watch, and the angel God sent watches over me, even though I can't pray. God knows I am only dust, He knows I am only me.</div><div><br />
</div><div>I am watching Duran Duran videos. That is all I do. I do not read, I do not write, I do not pray. I watch John Taylor on a beach. Simon Le Bon on a yacht. As far away from this cold grey hospital room as I can possibly be.</div><div><br />
</div><div>My sister was a fan. I listened to tough girl music, Ramones, The Runaways. Music to beat up cheerleaders by. I secretly lusted after the bass player, though. She had pictures of them everywhere. Tall skinny bass player. Sage sees a picture of him on my desktop. He laughs, pointing out that Dad is a tall, skinny bass player. </div><div>Ha.</div><div><br />
</div><div>I start following John Taylor on twitter. He, like myself, is long into recovery, but the similarities of our lives end there. He is a famous musician, jet setting around the world, and he does not have to call his friends to ask them to do his dishes and bring a change of socks to the hospital. </div><div><br />
</div><div>The fans who tweet him are about my age, and they live for tweets. They argue and fuss over him, what is his favorite color, how is his little dog, is his cold better, which car is he driving? He posts pictures of his little dog, of the traffic in London, of his breakfast, of Simon Le Bon. I am riveted. Some of the ladies have autistic children, they tweet me, I am not interested. I want to lose myself in the inanity of their obsession. I know they have lives they have to go back to, that don't involve a sexy British guy with a mansion, but I would like to stay on the surface for now.</div><div><br />
</div><div>Her name is Rio....</div><div><br />
</div><div>I tweet him, and ask him how he stays sober, does he still go to meetings? He answers me immediatly. One word appears in my inbox.</div><div>Absolutley.</div><div><br />
</div><div>I tweet him back....hey, I am really struggling, my child is ill I want to go get high right now, right this minute, I just want to drink like four screwdrivers right in a row but I have been clean pretty much for years but I just can't do this...</div><div><br />
</div><div>I realize that I can't email him back, because he doesn't follow me on twitter. I don't want to post my message, either.</div><div><br />
</div><div>What am I thinking, anyway? He is just a guy with a mansion and his own sorrows and pain and things he wishes he could forget. Only he is John Taylor, so he has to find another way to pretend it isn't real.</div><div><br />
</div><div>It is time. We go with Jude down to the fourth floor, and surrender our phones, and our keys, and our child. He is sleeping when I leave, and I put my headphones on, and listen to Duran Duran the entire way home.</div><div><br />
</div><div><br />
</div><div><br />
</div></div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-64321773684129397152011-03-27T16:34:00.000-05:002011-03-30T10:54:16.107-05:00Just Keep Swimming, or Dust Part 2<div dir="ltr" style="text-align: left;" trbidi="on">I don't know how to be okay. Heather tells me about mindfulness, which is, I guess, a way of keeping yourself from completely freaking out. If I am making a cup of tea, I am making a cup of tea. If I am putting on my shoes, I am really focusing on my shoes. Nothing else.<br />
<br />
I try not to look at the lake, the waters are dark and they scare me. The drive to the hospital to see Jude is cold, and silent. Duran Duran's Come Undone plays on repeat on my ipod. Don doesn't seem to mind this new obsession. When Eden was bad I watched Korean pop music videos night and day. He has given up trying to understand.<br />
<br />
Warm beaches. fashionable people. No one is sick. I live in Chicago, I have dreadlocks, and I have not shaved my legs for two decades. Duran Duran is about as incongruent as it gets. I love it, John Taylor is perfect. I devour every article, every interview. He is intelligent and thoughtful, talking about art and music and recovery. "Absolutely," I say to myself. John Taylor does not live in a commune. He does not stand in line for dinner, he does not dig through donation food or argue about whose turn it is to vacuum the hallway. He does not have to start IV's on his children or worry about blood born illness. He drives a Range Rover. A green one.<br />
<br />
We are there. Jude is happy to see us, but wants to go home. He asks us, again and again, and begins to get agitated, and we have to go. They have to put him in the 'quiet room', and they have give him Haldol, and they tell me that he now has a heart condition, from the medicines they have been giving him.<br />
<br />
This is hell. We are in hell. There are no beaches, no yachts in hell. I am in hell.<br />
<br />
God is not good if Jude has to suffer. Give it to someone else, God, like some guy who says you hate queers or a child molester. Me, give it to me.<br />
<br />
Prayers go unanswered and I throw up in the parking lot. I listen to Duran Duran and I speak to no one.<br />
<br />
The next day Jude is better. Just a little better. I crawl into bed with him and we fall asleep for hours, wrapped up in one another, and Don sits by us. It is like when he was a baby, and I held him while he slept, milk drunk and loved, not a care in the world.<br />
<br />
We are going home. Home. He can come home with us. We hurry to the car in case they change their minds.<br />
<br />
He is screaming. Furniture flies, glass is breaking. The meds are not working. We cannot control him. I do not want to go back. God help us, we cannot go back. It has been suggested that we may have to put Jude in residential care. He is eleven. GOD, HE IS ELEVEN!<br />
<br />
I have worked with Jude. Too many hours of therapy, blood, sweat, tears, flashcards to count. I was always told he was making progress, that he would someday be able to live on his own, have a life. Now puberty has hit, bringing seizures, migraines, and rage. I should have seen this coming, they seem to imply. This could be the new normal.<br />
<br />
My friends, the people I live with, they don't want to say it. I know they are scared by the meltdowns, by the screaming, by my bruises. They would never say it, but Katherine does. She cries as she holds my hand. "We may not make it. He may not be able to be safe here." She is right. If I have to put Jude in a group home, I will die. It is that simple. I will die.<br />
<br />
We go to play therapy, where Jude comes undone, because Wendy and Don are pushing him. I hate them both, and I go to the parking lot, and when I come back in, Jude is punching himself in the head and Wendy is about to call 911. I speak to him soothingly, and promise him soda, and Don takes him to the car. I sit on the floor of the center's waiting room. Wendy asks me to come in the office. I shake my head no. I refuse to move. She asks me if I am okay, No, I tell her, I will never be okay. Never again.<br />
God is cruel, I tell her.<br />
<br />
The very thing that has saved me from drug addiction, despair, and given me life and breath is now untrue. It will never be okay. Never again.<br />
<br />
Wendy will not let me go home until her I promise I am safe.<br />
I go home and look online for residential care services for autistic children.<br />
<br />
The next day we are back in the ER, because Jude is having yet another uncontrollable meltdown. The pysch resident is talking to us, and Jude steps over to him, and pats his red hair, and says, "You have a pretty head, like Eden's."<br />
<br />
I burst into tears, and beg him, oh, God, please help us. Please, let me take my baby home. This can't be it, this can't be true.<br />
<br />
He looks at me, and I realize he is just a kid, like all residents, and he calls his attending, and they adjust Jude's meds, one more time. Just one more try.<br />
<br />
It works. We go one day with no screaming. Two. A week. I breath. Jude smiles. He laughs. We are careful with him, we don't try to send him to school or make him button his own pants, but we start to see him smile, and his speech improves, and oh, my, god. The drugs are working.<br />
<br />
<br />
<br />
Jude is watching Finding Nemo for the fourth time today. I am Marlin, anxious and controlling. Don is Dory, cheerful and forgetful. I watch it with Jude, while I check to see what sexy British bass players and their fans are up to. Jude is sorting out his stuff, using Finding Nemo as a template. I am avoiding my stuff, because it is a bit too raw, and I know what is on the horizon. This is but a respite, and there is bleeding, screaming, letting go to do. I am asking that my friends believe for me. I am trying to be mindful, and I am asking for a little grace, a little mercy, please God, because after all, I am yours, but I am only dust.</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com4tag:blogger.com,1999:blog-4993077457254361784.post-37231400271965732782011-03-15T00:07:00.004-05:002011-03-15T07:06:15.560-05:00On Addiction<div dir="ltr" style="text-align: left;" trbidi="on">I don't talk about it much. I was so young, it was so long ago. It is an undeniable truth, though. I was an addict. I still am.<br />
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">I grew up around it, everyone drank. It meant family to me, the smell of whiskey on my father's breath, the smell of beer when my cousin tossed me in the air. Irish drinking songs, The Downtown Club with my father. I loved the way it tasted, the way it smelled, the sound of ice in the glasses. Laughter downstairs when I had gone to bed.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">After awhile it wasn't all fun, though. My father was angry much the time, and my cousin scared me when he was drunk. Waiting outside in the car when my father was in the bar. Somehow no one cared what I wanted or needed unless they were drunk, and then I was pretty and sweet and special.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">My first boyfriend got me high. It was the most beautiful feeling, ever. I was thirteen and he was older, blond, and beautiful, and cared what I had to say. He gave me pills, we smoked dope, I drank vodka from a 7-Up bottle, hid little airplane bottles in my backpack. When I was fourteen, I needed to drink in the morning or my hands shook. My parents were horrified at my relationships, my behavior, my grades. I wondered how they could say I was ruining my life. They were miserable, and drank more than I did. My boyfriend got kicked out of our boarding school and he was gone. I was all alone.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">One night I lined up all the pills I could find in my father's medicine cabinet. Darvon, Tylenol 3, Valium.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">I swallowed all of them with gin.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Apparently I called my girlfriend to tell her what I had done. I have no memory of that. She called my mother. I threw up on the way to the hospital. My mother screamed at me for messing up her new car.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">So long ago. I have everything I ever wanted now. A husband, a family, a church, a purpose. I am not the girl in the denim jacket hitch hiking, getting as far out of town as I could until the cops brought me back, over and over again. I have been clean since 1989, and only once did I drink or get high from 1986 until then. I begged God to help me, and He did. From that day, it was never the same.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Sometimes it whispers my name. After my third child was born the drugs they gave me felt so good I thought about them every day for a year. I ate myself into a stupor trying to pretend my kids weren't sick. When I don't eat, when I am sober. I feel things. Sometimes that is a bitch. The pain of not being able to help my son when he is screaming, confused, and the pain of almost losing him, and no way to numb it, that has almost undone me this year. I stood on the beach, looking at the water, wondering how much longer I could hang on, how much more I could take.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">When Jude was in the hospital last week I told my friend I wanted to get high. She has walked this herself, and looked me in the eye, and said, "Of course you do."</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">The comfort of being known. The gift of feeling pain. The mercy to never, ever have to go back. I can take those things and be okay today. Just one more day. I can do that, and start again tomorrow morning. Because I might be broken, but I am not alone, and I have been found, and I am known. That is enough for me, and I can feel it, all mixed in with pain and sorrow and things I wish I could forget. I don't have to be strong, I just have to be still, and know what is true.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Forget brave. Just show up and be loved.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">That I can manage, just for today.</div></div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com3tag:blogger.com,1999:blog-4993077457254361784.post-25687695376964226012010-11-18T16:13:00.000-06:002010-11-18T16:13:51.004-06:00EarringThis is a kind man, this psychologist with the British accent. I can tell. He has an earring. That alone got past my defenses, just a little.<br />
<br />
I hate these appointments.<br />
<br />
It is his job to evaluate Jude for services. The premise of the grant we are up for is that it is cheaper for the government to provide things like respite and care in the home than to pay for residential care.<br />
<br />
Residential care. It sounds like swearing. We don't say those words in my house.<br />
<br />
Nice guy asks Jude some questions, like what day is it, and where do you live? Jude points at some pictures when asked, but not all of them. I try not to interfere.<br />
<br />
Actually, the worse this guy's report is, the better chance we have of getting the grant. I should not be trying to get Jude to show how smart he is. Rationality, though, is outside cooling its heels in the minivan. I left it there. I always do.<br />
<br />
When the testing is all done, Don takes Jude outside to look at squirrels or whatever and I stay to talk to earring. He tells me, not unkindly, that Jude tests in the mentally retarded range, and that he will likely need residential care before his teen years are through.<br />
<br />
He is brilliant, I say. Jude knows who Gustav Klimt is, for God's sake. He loves Thoreau. Keats. Brahms.<br />
<br />
That might be, says nice earring man, but if he can't put on his own shoes, then his functional IQ is low.<br />
<br />
There are plenty of people out there who function just FINE I want to say, and they never recognize beauty one freaking moment of their lives. I do tell him, that Jude is loved, and lovely, and happy. I might have waved my finger in his face.<br />
<br />
Poor guy. What a crappy job. He gets paid to tell people things no one should ever have to hear.<br />
<br />
Later, at home, I cry, weeping, sobbing with a towel in my mouth so no one can hear my anguish in the bathroom. It's not fair, God, not fair, you give me this beautiful child and then you ask me to give him up. I can't be that brave. Stop asking me to be so brave.<br />
<br />
I send nice British earring guy an email, thanks for being honest with me.<br />
He writes me back that my feelings are quite normal, but I can't use them to make decisions about Jude's future, because Jude deserves independence. Just like I am planning for Sage and Eden to grow up and have a life, so I must plan for Jude.<br />
<br />
He is right. It is a selfish, crappy message to give to Jude that he can only be okay when he is with me, and that I only exist to wipe his nose and button his shirt. Just like God has a plan for Sage, and Eden, and me, and my friend's kids, and earring guy, He has one for Jude.<br />
<br />
So I pull up my socks, and trust in God, and try to be brave. Just try. Right now, it is really all I can do. Okay God, and Jude, and earring guy, this is me, taking those baby steps. Trying to move forward, and trying to let go.<br />
<br />
Just don't ask me not to cry.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com2tag:blogger.com,1999:blog-4993077457254361784.post-44488659467282313502010-10-20T12:07:00.001-05:002010-10-20T22:29:03.991-05:00Take Me to Your Leader<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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. </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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." </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">Counselor knows her stuff though, she presses, gently, and finally gets Eden to say what he is thinking.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"I was thinking," he says, staring at his Legos, that it was, (fingers to the eyes) my fault." </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">I open my mouth to protest but the counselor holds up a hand. </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"Why is that, Eden?"</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"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. </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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?"</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"Nope."</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"Honey, yes you do. It was just yesterday."</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"I forgot about that."</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"Is there anything you want to say today?" I ask. He thinks a moment, then whispers in my ear.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"Sometimes I wish Jude didn't have autism".</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"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.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">Is that okay? Can we be sad and disappointed and frustrated and happy and joyful at the same time?</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-55399304124237366862010-10-14T16:22:00.004-05:002010-10-14T18:46:05.155-05:00Trees and Leaves<div style="font: 12px Helvetica; margin: 0px; min-height: 14px;">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. </div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">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. </div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">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. </div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">"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.</div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">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.</div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">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.</div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">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. </div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">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?</div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">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.</div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div><div style="font: 12px Helvetica; margin: 0px;">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.</div><div style="font: 12px Helvetica; margin: 0px; min-height: 14px;"><br />
</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-11892590954854817852010-10-12T10:47:00.001-05:002010-10-12T10:48:23.269-05:00Columbus DayDriving 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com1tag:blogger.com,1999:blog-4993077457254361784.post-64992058662109233322010-08-20T19:36:00.000-05:002010-08-20T19:36:08.302-05:00Storm Clouds and the Cloths of Heaven<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">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.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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?"</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"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.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">"You can just say migraine. I know what that is." With that he is gone.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">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,</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">for you tread upon my dreams. </div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-39605600477263931702010-07-27T12:52:00.001-05:002010-07-27T13:03:34.273-05:00Love, Longing, and DumsptersJude 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
"Why do you like it so much?" I ask, not expecting an answer. "It's beautiful," says Jude.<br />
<br />
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.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-73611442674239735182010-07-22T11:18:00.003-05:002010-07-22T11:23:48.918-05:00Enough<div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">Enough </span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">it is night, a purple dark</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">with shades of navy blue</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">and there is water</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">dripping in the alley </span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">you are breathing</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">a giggle</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">and your hand waves in its own celebration of what is inside </span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">and I rest my hand on your chestFeel it moveWith just my fingers </span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">and smell the sweet yeast of your shirt </span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">if I close my eyes you are a baby Gentle and malleable and soft</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">and you smile But now there is tinsel And it surrounds a white patch In my heart</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">and I need to fill it in With a marker or some felt</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">so no one falls in but you are here </span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">and I am not sure if I broke you </span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">or if you grew away</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">because I did not twist the tendrilsIn the right direction </span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">this is what we have in this blue dark nightAnd it may be enoughIf we decide it is</span></div><div style="text-align: left;"><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px;">and we do</span></div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-76094063645367591672010-07-21T17:51:00.000-05:002010-07-21T17:51:22.428-05:00Lottery<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">My son flaps his hands and bellows at the television</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">Shouting out his own poetry</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">Words that mixed inside his head</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">pop out at random </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">like lottery balls</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">they create a picture </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">in the afternoon light</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><br />
</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">This is not what we had planned</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">yet it has its own beauty</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">like plastic bags in the wind</div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">or tears on the eyelashes </div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">of a child when his birthday is done</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-26652718674369623092010-07-04T13:05:00.000-05:002010-07-04T13:05:28.643-05:00Lost TimeThese 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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?"<br />
<br />
"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.<br />
No more clinging, just letting go, and maybe a little dancing, and running, and maybe a little waving goodbye.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com1tag:blogger.com,1999:blog-4993077457254361784.post-61887737472454670862010-06-16T13:09:00.000-05:002010-06-16T13:09:39.019-05:00Hold MeIf 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Me too, I told him. Then he whispered that sometime, just sometimes, he wished that Jude didn't have autism.<br />
<br />
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.<br />
<br />
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.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-39223510122260224682010-06-08T13:36:00.000-05:002010-06-08T13:36:07.893-05:00Mausferatu<div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">"Hamster!" says Jude.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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. </div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">"Hamster!" Says Jude.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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. </div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">"Goodbye, Hamster!" says Jude.</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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. </div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><br />
</div><div style="font: 14.0px 'Times New Roman'; margin: 0.0px 0.0px 0.0px 0.0px;">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.</div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com1tag:blogger.com,1999:blog-4993077457254361784.post-88831151163850658692010-05-28T11:23:00.000-05:002010-05-28T11:23:22.239-05:00A Separate PeaceJude comes in our room at night. We send him back to his room, but it doesn't work. It frustrates my husband, he wants, understandably, just a little time to ourselves. The trouble is, there is a magnetic pull, calling to Jude, willing him to pad down the hall and open our door.<br />
<br />
It is me. I will him to come down here, for one more kiss, one more sleepy snuggle.<br />
<br />
In my mind, I have had to sacrifice so much, what with sending them off to school, teaching them to do things without me. It is especially hard with Jude, who for so long could not speak. We have this connection, this way of communicating without words, a soundless understanding. It is hard to give that up. In a sense he is my last baby, my last child who understands my wordless love, who is comforted by my smell and the beating of my heart.<br />
<br />
There is a part of me that wants to consume the one I love, to be enveloped in them, to breathe them. Separation is the hardest thing to face, but perversely it is my greatest responsibility as a mother. How messed up is that? My whole purpose in life was to bond and nurture, bond and nurture, and now my greatest calling is to send them away?<br />
<br />
The bible addresses the idea that children become idols in several places. The godly (Abraham, Hannah, Mary) hand them over willingly, while the ones who cling hurt themselves and their children. I see it. I want to cling tight and never let go. I see how wrong it is, too, the selfishness, the needs I want to meet through those whose needs I am meant to meet.<br />
<br />
Love is sacrifice, love is letting go. Love is teaching you to tie your shoes and not having to know what you did at school today. Love is sending you and your fuzzy head that smells like summer back to your room, to dream your own dreams, not mine, separate and well defined.<br />
<br />
I love you. And that's the truth, that is what is real. I don't have to sacrifice my dreams, my plans, my wants, my desires.<br />
<br />
I just have to let go of you.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com2tag:blogger.com,1999:blog-4993077457254361784.post-4194117390867283522010-05-27T09:33:00.000-05:002010-05-27T09:33:27.216-05:00Impulse ControlEvery family has one, and in our family, it was me. Impulse control was not my very best thing growing up. I was the one stepping in the mud puddle that filled up my shoes, touching the light socket, and once, famously, feeding the dachshund a big piece of taffy that sealed his mouth shut and sent him to the vet.<br />
<br />
It seemed like a good idea at the time.<br />
<br />
My parents despaired. I had a pristine, well behaved older sister who never even got her clothes dirty. It would never occur to her to overflow the bathtub or put beans in her ears. This made my exploits seem even more outrageous by comparison. As an adult I still struggle with this, firing off outraged emails I regret moments later, or making a joke that seemed funny in my head, but rings highly inappropriate as it leaves my mouth. It's a work in progress.<br />
<br />
My oldest son is well behaved. He doesn't talk back, has a kind demeanor, and is very truthful. The thing is, though, is that poor impulse control seems to be genetic.<br />
<br />
We have gone to the hospital for swallowed pennies, party favors in noses and falls off detergent bottles. (It was a game that ended badly.) We have discovered the hard way that some things do not flush, no matter how hard you try. Last September he jumped out of a playground tower, breaking both feet, in spite of being keenly aware of a bleeding disorder and thin bones.<br />
<br />
"But, why?" everyone asked.<br />
<br />
Everyone but me.<br />
<br />
Two nights ago my sweet, creative son decided to practice using his epinephrine pen that he has for allergy emergencies. When he came into my room, bleeding and hyperventilating, gasping, "EPPY PEN, EPPY PEN!!" I thought he NEEDED the eppy pen. No. His heart rate was through the roof and he looked like he might pass out.<br />
<br />
On the way to the hospital, in the ambulance, I had a hard time not laughing. Sage was fine and I felt giddy with relief and the thought of telling the story at family dinners for years to come.<br />
<br />
"Why aren't you mad?' He asks.<br />
<br />
"Because you make sense to me," I say. I know that the humiliation of the neighbors seeing the ambulance and the pain of the needle that went through his thumb is a powerful lesson, just like the casts he wore on his feet. I want him to remember that instead of ranting and yelling from me.<br />
<br />
He and I sit in the waiting room for about an hour, and his heart rate is fine, blood pressure, too. The nurse is mean, and there are a lot of sick and broken people waiting, so we walk home down city sidewalks in a companionable silence that only happens sometimes, rarely, with someone you truly, truly understand.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-29375711781771057892010-05-11T10:02:00.000-05:002010-05-11T10:02:13.279-05:00Deliver Me<!--[if gte mso 9]><xml> <o:DocumentProperties> <o:Template>Normal</o:Template> <o:Revision>0</o:Revision> <o:TotalTime>0</o:TotalTime> <o:Pages>1</o:Pages> <o:Words>853</o:Words> <o:Characters>4865</o:Characters> <o:Company>JPUSA</o:Company> <o:Lines>40</o:Lines> <o:Paragraphs>9</o:Paragraphs> <o:CharactersWithSpaces>5974</o:CharactersWithSpaces> <o:Version>10.2006</o:Version> </o:DocumentProperties> </xml><![endif]--><!--[if gte mso 9]><xml> <w:WordDocument> <w:Zoom>0</w:Zoom> <w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery> <w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery> <w:UseMarginsForDrawingGridOrigin/> </w:WordDocument> </xml><![endif]--> <style>
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<div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;"><!--[if !supportEmptyParas]--><!--[endif]--> In 1996 I wanted kids. Several. Immediately. After one miscarriage I had not been able to get pregnant, and was told that with the mild bleeding disorder that ran through my family I had a high chance of not being able to carry a child. All my friends were getting pregnant and giving birth to pretty, healthy babies with ease. My fury with God, who I had, along with my husband, committed to serve in an inner city intentional community, was ruining my life.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">While my friends were having baby showers, I was at Cook County Hospital getting my tubes cleared.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">Thanks a lot, God.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">My religious commitment only ran so deep. I guess I felt He owed me, after all the things I had given up, mostly things that were bad for me, like my crazy family and getting high with strange men in trailer parks. Or I felt like He owed me because I thrown myself into working with the homeless, particularly elderly homeless, with a fervor, seeing myself as selfless, but looking back I guess frantic activity was the best way of not thinking about stuff that made me want to get high in trailer parks, like my family.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">Over a decade of being a Christian , and this was it for me as far as personal growth. <o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">So, the day I took a pregnancy test to make sure it was safe to take yet another round of hormones that made me want burn down the public library, and there were two lines, I was thrown. I called our doctor, a very attentive guy with a ponytail who had been amazingly patient with my threats and demands. (At one point he put his hand on my husband’s shoulder and gave him a look of sympathy. This offended me so much I paged him repeatedly at 3 a.m. the following morning and punched in a made up number.)<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">“Well,” he said,” now that you are pregnant, we have to keep you that way.”<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">And so it began. Nine months of bed rest, vomiting, bleeding, scares, and finally the docs just put me in the hospital for the duration.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">It is hard to describe what Cook County was like in the nineties. Suffice it to say I was Dr. Chronopoulos’ only patient that was not an inmate in Cook County Jail. The other ladies on my floor were either homeless or from rehab. Actually, that did not bother me as much as the endless medical students and doctors coming in to prod me and talk about me like I was a show on the Discovery Channel. I had three weeks to go and I was not, as they say,<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">a happy mommy.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">The ladies there helped me pass the time by inviting me to watch slasher films and crank call poor Dr. Chronopoulos, who was very handsome and was so nice he gave all his patients his home pager. We would take turns waddling down to the pay phone and paging him and when he would call back everyone would cat call him from the lounge. He always returned his pages, though, and he never got mad. <o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">His best friend, another resident of Greek descent with equally good looks and a very nice disposition would come up to see me on the floor. I liked Dr. Michael but it was hard not to make cynical cracks about fraternities and trust funds when he and Dr. Chronopoulos were around. The truth was, Cook County was the place to do your residency, and you only got in if you were good. They were so kind to me. I think they knew I was scared.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">Finally, thank God, my water broke. No turning back. I was so overdue I looked like a Volkswagen and I felt positively postal. Dr. Chronopoulos showed up in the wee hours of the morning to deliver my baby, kindly ignoring the threats coming from my spinning head and working with my absolute refusal to push. And my baby was out. I held out my arms, but a lot of people were in the room and they were all working on him. A boy. The room was silent.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">Dr. Chronopoulos jumped up on the table and started shoving his fist into my belly. I protested but he told me to be quiet and do what he said. Apparently I was hemorrhaging. And I had not heard a single sound from across the room.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;"><!--[if !supportEmptyParas]--> <!--[endif]--><o:p></o:p>Later that night, back on the ward, the nurse woke me up to take my vitals. “How is my baby?” I asked, and she patted my shoulder. “Just another opportunity for God to do a miracle,” she said.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">Yeah, I thought. Please God. Just this one more thing. A miracle. My belly felt like wading pool at the end of the summer, deflated and sad, and there was no baby, <o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">He had been taken to the NICU across the street.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">No baby.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">The next day Don and Dr. Chronopoulos showed up with a wheelchair. Let’s go, they said, and I put my pillow over my head and sang “Guantanamaro”, pretending I was at Burger King.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">“Rebecca,” said Dr. Chronopoulos in my ear. “Let’s go see your baby.”<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">I let myself be bundled into the chair and pushed through the massive underground tunnels that connect the buildings of the County Medical complex. When we arrived at the NICU I looked at my husband. “I can’t,” I said. I was so scared to see my baby; afraid he would be in pain, afraid to love someone who would die. I just couldn’t.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">“Is he hooked up to tubes?” I asked. The NICU doc who had joined us laughed. “He was, but he pulled the vent tube out and started breathing on his own.”<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">“Really?” All the doctors were standing around, smiling.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;">“Really,” said my husband. And I got up, and walked over to the isolette, and there he was, looking so peaceful, so wise, like he knew the answers to all the things that troubled my heart, and we pressed out faces against the plastic, my husband and I, and we named him Sage.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><div class="MsoNormal" style="line-height: 150%;"><span style="font-size: small;"><span style="font-family: Arial;"><!--[if !supportEmptyParas]--> <!--[endif]--><o:p></o:p>Dr. Chronopoulos gets a picture of Sage every year, and so does Dr. Michael. Dr. Michael has a private practice out in the suburbs and he delivered my next two babies. He has threatened to leave the country if I get pregnant again.<o:p></o:p></span></span></div><div class="MsoNormal" style="line-height: 150%;"><br />
</div><span style="font-size: small;"><span style="font-family: Arial;">Dr. Chronopoulos works at a big hospital in the suburbs, with a successful private practice, and I hear his patients love him, and that he has children of his own. I hope he is enjoying fatherhood, and that his answering service weeds out all the crazies who try to call him at three a.m. for absolutely no good reason at all.</span></span><br />
<br />
<div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"> Happy Birthday Sage.</span></div><span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">I came alive the day you were born.</span><span style="font-family: Arial; font-size: 12pt;"> </span><!--EndFragment-->Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-11177016088174786162010-05-04T10:56:00.000-05:002010-05-04T10:56:57.076-05:00EphemeralThe theatre, she would say, is ephemeral. Whatever, I thought in my fourteen year old brain. This is I Remember Mama, lady, and Alabama is pretty freakin far off Broadway. But my tweaky drama teacher had a point, it was just a moment in time, never to be again. That is a hard concept for an adolescent, not taking things for granted. You are pretty much trying to ignore everything because you are waiting for your real life to begin. This is just a dress rehearsal until you get a driver's license.<br />
<br />
Ephemeral. Not a bad word, though I don't get to use it much. Working it into a sentence would make me sound all farty and pretentious like the drama teacher. I think about it a lot, though. In fact, it is the key to parenting kids whose futures are kinda iffy, in the sense that who the hell knows where we will be tomorrow, much less ten years from now? Nothing like precarious health to remind you to live in the moment. That and giving up on expectations, which is actually a good thing, a really, really good thing.<br />
Every smile, every hug, every kiss is just a bonus, a windfall, like winning money off a scratchy ticket.<br />
<br />
I am writing, right now, listening music on my earbuds and Jude is home from school, recovering from the migraine he had last night and dancing in front of the tv, worshipping Bert and Bernice the pigeon in an interpretive dance sort of way that goes surprisingly well with the Ting Tings, and it is ephemeral, a moment in time, a perfect, sweet moment that only comes from releasing what you thought you wanted and letting yourself be carried away by joy, by what tastes exquisite on your tongue right here, right now, and knowing not everyone gets to let go like this. My teacher, not the drama lady with her delusions of grandeur, but my teacher with blond hair, a too small Tigger shirt and a way with words has so much more to teach me, and here I am, ready to learn, not looking forward but satisfied to sit and learn at the feet of the master.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-5028612117693052922010-05-03T15:23:00.000-05:002010-05-03T15:23:56.644-05:00Use Your WordsWe all want to be heard. We all have a voice. If you can find your voice, you can live. Speak, my counselor says, speak. The pain we hold close, like foxes beneath our coats, hidden but clawing us to death.<br />
<br />
Jude needs to speak, he screams and we say use your words, love. Tell me why you are screaming, why are you angry, what does it mean?<br />
<br />
Use your words. There are no words sometimes, just something primal that must come.<br />
<br />
If we can write it, we live. We can breathe.<br />
<br />
Jude is screaming, BEACH BEACH over and over and over. He has his bathing suit on, Red faced. Gasping and sobbing. How can get him to understand, the beach is closed, it is 55 degrees, I wish I could take you, but I can't.<br />
<br />
I get out paper. I tell Jude to draw a picture of the beach. I write underneath, Jude wanted to go to the beach, but it was closed. He was sad and mad. May 21 is beach day. the end.<br />
<br />
Quiet. Jude allows me to hold him. He holds the paper in his fist.<br />
<br />
We just want to be heard.<br />
<br />
If I can speak it, I can live. It cannot hurt me now, what was done to my body, years and years ago, yet will kill me if I hold it. I will use my words. I kiss his head, salty and sweaty. I hear you, love. It is just that simple. We all have a voice, and we all have to use our words.Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com0tag:blogger.com,1999:blog-4993077457254361784.post-30768387978721820342010-04-20T18:14:00.000-05:002010-04-20T18:28:35.850-05:00Storm SeasonEvery spring. Every spring it seems we go through this, the meltdowns, the sudden inability of Jude to regulate himself at all. Just last week he was happy, playing, sweet, funny. Now the storms have come, blowing in with no warning and wreaking havoc on our lives. I am hanging on for dear life. <div><br /></div><div>I know why some children pound their heads. Sometimes you just have to do something.<br /><div><br /></div><div>Screaming one minute, sobbing broken hearted the next. Waves, wind. Every year it gets harder because he gets bigger. I don't want him to hurt himself, or anyone else. I wish I could stand there and absorb the blows, if it would make anything better. It might make me feel better, but I don't know why. If someone you love has never screamed in agony while you stood by helplessly, you are very lucky, very blessed.</div><div><br /></div><div>When a storm comes. you have to hold on tight. Wait it out. Try not to get hurt. Things can be replaced, right? Isn't that what they always say? Toys, doors, stuff get broken, and my heart, my heart gets broken, over and over and over again, and I have to convince myself, one more time, that there is someone asleep in the boat, unconcerned, and that it will be okay when He wants it to be, and not one minute before that, and that we will not be lost, no, it will be alright in the end. </div></div>Rebeccahttp://www.blogger.com/profile/08724000171358073678noreply@blogger.com1