Mausferatu

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

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

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

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

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

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

"Hamster!" says Jude.

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

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

"Hamster!" Says Jude.

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

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

"Goodbye, Hamster!" says Jude.

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

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

A Separate Peace

Jude 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.

It is me. I will him to come down here, for one more kiss, one more sleepy snuggle.

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.

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?

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.

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.

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.

I just have to let go of you.

Impulse Control

Every 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.

It seemed like a good idea at the time.

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.

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.

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.

"But, why?" everyone asked.

Everyone but me.

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.

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.

"Why aren't you mad?' He asks.

"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.

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.

Deliver Me

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.

While my friends were having baby showers, I was at Cook County Hospital getting my tubes cleared.

Thanks a lot, God.

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.

Over a decade of being a Christian , and this was it for me as far as personal growth.

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.)

“Well,” he said,” now that you are pregnant, we have to keep you that way.”

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.

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,

a happy mommy.

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.

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.

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.

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.

 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.

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,

He had been taken to the NICU across the street.

No baby.

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.

“Rebecca,” said Dr. Chronopoulos in my ear. “Let’s go see your baby.”

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.

“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.”

“Really?” All the doctors were standing around, smiling.

“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.

 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.

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.

 Happy Birthday Sage.

I came alive the day you were born. 

Ephemeral

The 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.

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.
Every smile, every hug, every kiss is just a bonus, a windfall, like winning money off a scratchy ticket.

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.

Use Your Words

We 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.

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?

Use your words. There are no words sometimes, just something primal that must come.

If we can write it, we live. We can breathe.

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.

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.

Quiet. Jude allows me to hold him. He holds the paper in his fist.

We just want to be heard.

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.

Storm Season

Every 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.

I know why some children pound their heads. Sometimes you just have to do something.

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.

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.

Fly Boy

Sage tried to run yesterday. He really shouldn't have, his joints and tendons and bones just aren't able to handle the pounding. I should have a talk with him. He actually missed school today. It was a really bad idea, like last summer when he jumped off the playground tower and cracked bones that were brittle from lack of use. What was he thinking? I heard that phrase repeatedly from his doctors, friends, teachers.

So, I suppose I should be having a talk with him. THINK boy. You have limitations, for God's sake. Look before you leap. Count the cost. Accept your situation.

Here I sit, drinking my coffee, thinking all these grown up parenting thoughts. Here is the thought, though, that keeps coming back to me.

Screw maturity. Run. Jump. Fly, boy, fly. And never, ever let anyone say you can't.

That's what I have to say to you, and I will always be limping right behind you, while everyone else is on the sidelines watching and slowly shaking their heads in a very sensible way. Because even if your feet and legs don't work at all, I will be damned before I tell you your spirit can't soar.

The Education of the Divine Dr. M

I am ashamed to admit I have held it against her, all these years, poor Rebecca Mermelstein. Dr. Mermelstein, to you. And to me, but that is another story.

It was one of those moments where you remember every detail, what we were wearing, how the furniture was arranged, and how Marnie the perky social worker squeezed my hand. I knew it was going to be bad.

We had just completed weeks of testing, developmental, psychiatric, everything, for Jude. He had already received a diagnosis of PDD NOS, which means We Don't Know What the Hell Is Wrong With Your Child but We Suspect it Has Something to Do with Autism. This pronouncement is often followed by the We Just Don't Know That Much About the Brain speech, beloved by parents everywhere, who know it really means Don't Blame Me I Can't Fix Your Child. I was hoping for a glimmer of hope from the Divine Dr. M, as we had been calling her at home. She worked for the developmental nursery Jude attended in West Rogers Park that served the orthodox Jewish community. We found our way in there and loved it, feeling accepted and supported, and they adored Jude, in spite of the fact that he spent a lot of time screaming.

Dr. M told us that Jude was unable to do much of the testing, and when he did he was highly disorganized and easily overwhelmed. Most distressing, she said, was his lack of sense of self, and that he only recognized people who were important to him (his teacher, for example) in the context that he knew them in.

I responded appropriately, by crying a lot and then having to be coaxed from the ladies room.

When we got home I tried to throw the test results out the fifth floor window but Don said we might need them later. I told myself what I always did, that Jude was a sage and a poet and that no piece of paper could define him. Nope. Never.

Jude is ten now, and we just had him retested for the first time, because I was never, ever going through that again. We have worked like dogs the last six years, behavioral therapy, occupational, speech, play therapy, and therapy for me and the whole family including Grandma for God's sake. Somewhere along the line acceptance snuck in, and God gave me the grace, the mercy to enjoy my beautiful son, so perfect, so golden, revealing mysteries just a little at a time, like a complicated puzzle only I can put together. What a privilege.

We had to do it for school, though, the testing, and it made my stomach hurt. Marnie has since changed jobs, and now we have Elana, and Wendy, who are just as sweet but not as perky, which is fine. I brought tissues.

Dr. M started by saying her biggest finding was that Jude could do every bit of the testing with no modification. She said he has trouble thinking and learning sequentially, and learns everything Gestalt.

Done googling? Okay. I asked her if communication was his biggest obstacle. She smiled. He is a brilliant communicator, she says, it is as if he has been dropped in a foreign country and has figured out this fascinating way to communicate with metaphor.

I asked her for predictions, and she said, well, she supposed she wasn't very good at predictions, since she never would have predicted Jude would be this far at the age of ten.

I can see him becoming a poet, she says.

Oh, Dr. M.

We rode home in the sunshine, windows open, hands out the window. So different than the ride home years ago. God, it feels good when someone tells you something happy about your child. Brand new experience for me. I could get used to this.

The other night we were in Home Depot, in Skokie, looking for I don't know, wood or something, and I had made up a song about Dr. Mermelstein. It was a rap, really, saying all her names. Walking backwards reciting them while Don tried to pretend he did not know me.

Beks, Becca, Dr. M Bo Becca, and I ran into someone. I turned and I promise this is true, it was her. Dr. Rebecca Mermelstein, and she smiled the kindest smile I had ever seen, and I thought, the kind heart knows. Some things the heart just knows.

Fade Into You or, The Secret Life of Becca and Jude

We have these two lovely counselors at the community center. Wendy has been doing play therapy with Jude for years, helping him put intense emotions into words. Elana has been working with me, helping me, well, put intense emotions into words. These nice, capable people have their work cut out for them. In the words of my mother: "They don't pay those girls enough." Of course we have no idea what their salaries are, but unless I see Wendy on "Cribs" I am going to assume they are not paid what they are worth. 

We have been combining therapy, helping Jude with his separation anxiety and helping me with the same, teaching me to set boundaries with Jude, not appeasing him all the time, treating him like any other child. Dealing with my anxiety about being away or separate from him.

We were doing well until the seizures started.

Let me tell you I am not a newbie when it comes to terrified parenting.  I have two kids who could whack their heads on a coffee table and spend the week in ICU. I used to the whole High Alert thing. Seizures, though, are new, unpredictable, and oh god so scary. So I must admit I have backslidden just a bit. 

Every night I kiss Don goodnight and slip into bed with Jude. This is the only way I can know he is not silently seizing at night. Not the best scenario, I know. Gimme another idea, I am all ears.

Jude is likely to wake up and want to look at a book with me. Or reenact episodes of PBS kids. The other night I awoke to a flashlight in my face. I was supposed to say, "Jude Hill is a blockhead, but he did pick nice tree." Jude says, "It just needs a little love." Don came in all sleepy eyes just as we were waving our hands in front of the flashlight and singing "Hark the Herald Angels Sing." "What are you doing?" he asked, and like two kids caught playing past lights out at a slumber party we jumped back into bed.

I have long taken bubble baths to try to de stress. They are somewhat successful, with interruptions like Eden's red head appearing and his subsequent insistence that no one wipes his behind properly but me, lost hamsters. 

and Daddy forgetting he is watching the kids and going to the store. Now, however, Jude cannot stand even this separation, and I have learned enough from Wendy and Elana to know that it because I am scared, and that is the message that Jude gets, that he will not be okay if I am not with him. I am trying so hard to believe that he is, in fact, fine, that angels follow him and when he is not with me he is with people who love him. But for now this is the best we can do. So I hide the best I can under the bubbles while Bertie the Bus navigates the edge of the tub, trying not to fall into the drink, the white abyss.  This is not healthy, he is too old to be in here while I am naked, but for now we need to be sure of one another, having almost been separated for a long, long time, whether we wanted to be or not. We have used this reprieve, this second chance to circle the wagons, regroup, and pretend like nothing bad can happen if we close our eyes and just know that we are. 

In a little while, we will be ready, or I will, to be brave again. To let go again. Wave goodbye again. Say goodnight again. Close our eyes and remember that mercy, like love, doesn't forget, or fade, or duck out the back for a smoke.  Some things don't disappear, even if you can't see them, even if they are hidden from view.