Lights of My Life

Hope your Christmas is happy and that you have love all year long.

Falling

Funny, I have been in this same PICU room, so many times now. The same nice nurses, the same cheerful fish decor, and the same el trains passing over the highway. It seems like it is always snowing, and late at night I watch the empty trains passing back and forth, and it seems like this is my real life, and the other well lit happy life where my son is running and playing is just pretend, silly me pretending that one bump, one fall can't change our lives forever, or at least send us back here for awhile. I catch myself holding still, very still, trying to hide from monsters, God I know they are out there so I have to work so much harder to pretend.

It is getting light and the medical students are coming in to admire my beautiful boy, who looks so good it is easy to forget, to pretend that he is normal and will always be okay. I wonder if any of them catch the significance of his name, Eden. One misstep and happy times are gone.

They say we can go and we are off as quick as possible, running, paying the man at the parking deck to let us go, twenty dollars to go back to our happy place, our happy pretend place. We will visit again, soon I am sure, and while I am there I will look out the window and contemplate how precarious it all is, and go home and savor sunshine and kisses all the more.

My Hamster Took Over My Room

My Hamster Took Over My Room

By Sage and Rebecca Hill

My hamster took over my room.

There is toilet paper up to the ceiling
Shavings and sunflower seeds all over the floor

His giant water bottle gets in the way
I have no place to sleep
My mom says “what a mess!”

My baby brother thinks its fun
Late at night I hear disco music and lights
I can hear them dancing.
Flashing lights under the door

I just want my room back
I knock on the door
My hamster opens it a little
And closes it quick

It sounds like fun in there
My hamster took over my room.

Supposed to be

I am supposed to be the mama
thankyou mama
good job mama
its decided mama
I love you mama
in the kitchen mama

its santa's workshop mama
you had a good day at school mama
where's bertie mama
you like you pancakes mama

you so happy mama
did you have a good nights sleep mama
supposed to be proud happy sad good waiting why are you mad mama

want to see the dolphins mama
I am supposed to be decided happy sad container mama

I love you mama

Why Should I

Jude stands in front of the computer watching the colors swirl and morph on the visualizer. He is waiting for the song to come on. I am not a huge fan of Sting but apparently Jude is. He is still learning the words and he is woefully off key. It is beautiful.

Under the Arctic Fire
Over the seas of silence
for all my days remaining

would north be true

Why should I cry for you


My son sings of being lost in an endless world with no landmarks or bearings, where north is perhaps not true. I am not sure how much of the song he understands but I sense it is significant that he is so taken with it.

What would it mean to say
I loved you in my fashion

We have been on this journey, he and I, lost in vast seas with no compass. Sometimes the stars aren't there to show you which way to go, and you just have to keep moving. I know he loves me,
loves me in his fashion. I watch him sing his heart out with his eyes closed, and I know on some level he is touched by the words.

What would be true
why should I cry for you
why would you want me to?

I pull him onto my lap, and he is still humming the song, and I tell him some things really are true, and some things are constant, like my heart, like mercy and love that never ends, and those things are as vast and boundless as any ocean.

Why should I cry for you?
Why indeed.

This Just In...Trip to Farm is Big Success

Jude's class went to the pumpkin farm yesterday. It was a petting zoo, too, and there was a big tractor pulled hay ride.

I can't remember when we stopped taking Jude out in public except for school or the doctors. I think it was when he outgrew the stroller. The excitement, the not knowing what was next, buzzing sounds the rest of us could not hear, the fear of having to go home, they would all be too much for him, and the shrieking and writhing would ensue. People would stare and say stuff and I would say stuff back and act badly with no excuse. It was always just easier to stay home.

I missed the zoo, the park, the aquarium, and if we left Jude at home with a sitter I missed him, too. Sage missed out on so much. It broke my heart.

Recently we were brave enough to go to the aquarium. Jude had a blast. He yelled around a little when the dolphin show was over, but no meltdowns. We took him to the pool, where he was ecstatic the entire time, splashing and shouting and jumping into the water, over and over. We were thrilled, until he started to vomit. And vomit, and vomit, pool water and macaroni.

The pool reopened, eventually. It was a great story, anyway.

So, when the busses pulled up at the base of the giant inflatable pumpkin, my expectations were reasonable. As long as Jude had fun, and didn't ruin it for everyone else, I was all good.

Jude got off the bus, and saw me, and literally shook with joy. We all went over to the hay ride area to wait for creepy farmer guy to pull us around with a tractor. Whee. Jude waited patiently, where all around us, kids were writhing and shrieking and falling down with the pure excitement of it all. I recognized the syndrome, the 'I want every bit of it right now and I can't comprehend the concept of waiting in line' thing that autistic kids do. I was okay with it, and I expected it from Jude at some point.

He climbed onto the wagon, and we went lurching round the farm, and Jude was smiling, and pointing at stuff, and we got off the wagon, and went around and petted zebras and goats and pigs and stuff, and he was so happy and excited, and we saw rabbits and hay and gourds and STILL he was happy, and we sat down and ate lunch, and his juice spilled, and still he was good,
and time to go, and he waves bye to the farm with a little pumpkin in his bag to take home, and
God, thank you God, I never had a better day in my whole life. I had fun with my little boy at a pumpkin farm. CNN, ABC, NBC, stop the presses, there is breaking news. We had a blast.

We have worked hard this year, therapy after therapy, long hours and at times it seemed like it was getting nowhere.

I remember the moment Jude was born, after three days of teeth grinding pain and exhausting work, and Dr. Michael puts him right on my chest, screaming, and the biggest sense of relief and contentment washes over me, and the hardest hours of my life are behind me, and I know sleepless nights and hard times are ahead, but in that moment every tear, every desperate moment was so worth it, because now I was complete.

That's how I felt at the base of the giant inflated pumpkin, standing there with Jude watching it billow and buckle in the wind. It has all been worth it, we have a long way to go, but right here, right now, I have nothing more to ask for. Jude is happy, and I am complete.

Biodegradeable? Of course they are

Jude is easy to entertain. A big, clear shimmery garbage bag and a little wind and he is happy, so happy. So am I.

Most days I bring several with me out to the playard next to our building. Jude watches me hold it up to let the wind inflate the thing and he flaps madly, hardly able to contain himself. I tie it and hand it over and he flings it up into the air and dances with sheer exctasy as it flits and floats in the wind. It is like a ballet, my son and his big plastic pet.

Sometimes it floats way, way up, higher than our 10 story high rise, so far up until I am sure the planes coming into O'Hare are in jeopardy, and Jude is overcome with delight and anxiety, everyone in the yard is looking up, will it come back? If it falls on the playground equipment where Jude can't reach the big boys playing basketball get it and bring it to Jude.

Sometimes it floats over the wall, into the busy street, and brakes squeal and horns honk. I can't imagine what some poor cab driver thinks, a big clear shiny orb floating past his windshield. I picture him smiling admiringly and going home to be nicer to his children.

My friend Joy told me her favorite thing to do was to watch Jude and his big clear balloon bags,
and one morning she woke up, half dreaming about them. When she went to open her shade, there was a big one, blown onto the ledge outside her window, stuck there, waiting for her.

Jude used to cry when they flew away, grief stricken, and was not comforted by the handful of extras I kept in the stroller. He would scream the way he did when we left the room or said good night. His brain couldn't recreate the picture of what he loved, so when he couldn't see it, it ceased to exist. Garbage bags, his toy train, his mother. Gone.

One day a bag made its escape and I picked Jude up in tight squeeze. He looked at me and said,
"That's okay, it will fly in the sky with the clouds."

That's right, I said, amazed. Jude came in for dinner, without a fuss. Big clear industrial size trash bags are teaching my son about life. Joy, beauty in ordinary things. Letting go.

When I close my eyes at night, I think of them out there, floating on the wind like dandelion seeds, darting and swooping, flirting with the wind, happy and dancing with the clouds. They are big crackly plastic wishes and dreams, and they never disappear. They go on forever.

Places to go, someone to see

Julian stopped in to see us. He couldn't stay long, he had somewhere else to be, and we understand, we really do, but we are sad, too, we love him, and we wanted just a little more time.

We will have to be brave, and patient, and wait until we are all together in that place where there is enough time for everything, and we will not have to cling quite so tightly, because we will never, ever have to be apart again.

God speed, little man. See you soon.

Push

I can't do this. I changed my mind. It's too far, he will be scared, I don't care how nice they are, he's just a baby, he can stay home for another year.

I fought for Jude to get into this school. It is nationally known, built for kids like him. It is far, though, all the way to the forest preserves at the edge of the city. On the edge of the world.

Jude's last school was so small he knew the cook by name, sixteen kids all together. Such a gentle place. They never asked anything of Jude except to let them love him. Which was hard enough.

This new place is Jude's best chance at independence. So I will send him, crying if need be. I will stand on the sidewalk waving at the bus, watching it disappear, on its way to the end of the earth, without me.

Come on, you can do this. One big push, I know it hurts but you can do it. Close your eyes. Deep breath. Push.

Sit down, shut up, and make some Kool Aid

My oldest son is smart. He reads all the time. He is a kind child, and well liked. He just doesn't move very quickly.

On summer nights all the kids in the community go to the lot behind our building and play kickball. Sage always begs to go. I go too, and sit on the sidelines with a few other parents.

Sage stands in the outfield, looking at the sky, looking at bugs, examining his cuticles. "look alive Sage!!" I yell. My friend looks at me sideways. "what?" I say.

The ball heads his way. "get it!!" I scream. Sage covers his head and ducks in terror. I head out to the field. "Becca," says my friend, but I am on my way. "Hey," I tell him, that ball is super soft. No matter how hard it hits you won't get a bleed." "But it hurts," he says. My son who has endured painful medical procedures most of us would close our eyes for if we saw them on ER. The very soft ball. It hurts.

The kids are suggesting (nicely) that I clear the field. I go sit down next to my friend, who is trying not to roll his eyes.

Sage's team comes in and it is his turn to kick. Sage runs up, kicks the ball and starts jogging towards the plate, in slow motion. "RUN!!" I scream. He turns to look at me, and he is out.

He walks back slowly and sits by me. "Good try!" I say, and pat him on the back. He lays down in my lap and says, "I am DYING of thirst." "Wanna go home?" I ask. "No." he says, "I'll miss it." All this fun, I think. Sage's team heads back out.

"I never thought of you as a little league type parent," my friend says. "I am not," I say, insulted. "I just want him to have fun." "He is!' says friend. I am quiet. I know he is right. I just want Sage to be happy. I want him to participate. Get in there, not be scared.

Honestly, folks, I don't give a hamster butt if my kid does well in sports. I just don't want him to be scared to try. I am worried that I have ruined him with my terror that he would get hurt. "Careful" I call as he walks down the hallway. Now he is afraid of a soft ball.

He is here, though, playing with his friends, and they are okay with the fact that he is harvesting interesting rocks as the ball sails over his head. His team is up so he walks slowly back and sits next to me. "look," he says, and hands me a roly poly.

He is participating, just his way, and he will be afraid, and he'll be sad sometimes, too. That's what I have to look forward to. Sitting on the sidelines, keeping my mouth shut, letting him play the game, and being there, loving him, when he comes home for a bandaid, a kiss and smile.

Being a mother is like that, the hard stuff is not what you thought it would be. I thought the hard part would be having to be in there all the time, fixing everything. I was in there, when he was one, when he was two. Now he is eight. I have to step back. Just a little. Let him play the game, let him get hurt, (or not) and let him decide what is worth the risk and what isn't. That's harder than any two a.m. feeding, as far as I'm concerned.

So this is me, off to the side, watching intently but keeping my distance like an unrequited love. I will be here, to dry tears and ice swollen knees and to send him back, once again.
This is me, doing the hard stuff.
Woohoo. Go mom. Yea team.

Stop It Rosie

I have a love hate thing going on with PBS kids. For sure, it is good, safe programming that my kids love and I can leave it on all day without worrying, (bad mommy, too much tv, no no) unless there is a membership drive and then even the baby is scrambling for the remote. I have a few guidelines, like no the No Dragon Tales Before Mommy Has Had Her Coffee Rule. And I think I may be on some sort of PBS watch list, because when I get bored I send emails to my local station saying things like, “What happens when Clifford poops? I mean, he’s HUGE and he lives on this little island and all. Do they have a special boat to haul it away, or is that the reason the island is so lush and green?”

To date, I am still waiting for a response.

I really want to tell them that my strange, brilliant son turned PBS into a language. Jude’s brain couldn’t organize and come up with words to describe what he wanted and how he was feeling, so he borrowed from PBS. When we would put him to bed he’d say, “That’s all the PBS kids for today, folks. Thanks for watching.” When he would get up in the morning he’d say, "It’s time for Sesame Street. Stick around for Big Bird and Elmo, Cookie Monster..,” you get the picture. When he was snuggling with me before bed, he would say, ‘Teletubbies love the Noonoo, very much.”

The noonoo, is of course, the snuffly thing that follows the Teletubbies around cleaning up after them. At that point I was willing to take what I could get.

Most of all, Jude spoke Caillou.

For those of you fortunate enough not to spend your day pondering cartoon dog poop Caillou is a Canadian show about a little bald kid (why is he bald? I emailed the station with some very helpful links regarding alopecia) who goes around doing little kid things while his nice frumpy, maddeningly even tempered parents set reasonable boundaries for him while never losing their tempers. (Never. I wake up every morning thinking, is this the day Caillou’s Mommy will throw toast at Caillou’s Daddy? Where are the characters I can identify with? Sigh.)

A nararator comments on Caillou’s feelings in a simple, direct way. “Caillou was sad that the bird flew away. Caillou was angry that Rosie (his younger sister) took his toy. Caillou was afraid of the storm.”

Jude was mesmerized by this. As the show built up to the big moment of Caillou expressing himself “I don’t WANT to play with Rosie,” Jude would begin to jump and flap as if it were almost midnight on New Year’s Eve. He would yell CAILLOU” whenever something happened that he did not like. Soon he began to branch out, repeating whole episodes perfectly when they related to what we were doing, like when we took the el train, Jude would do the whole episode when Caillou takes the subway with Mommy.

Then he started calling his baby brother Rosie. “No Rosie, that’s mine!” from the countless episodes depicting sibling conflict. Poor Eden would walk in the room and Jude would yell, “Mommy, Daddy says I have to play with Rosie!” Eden still answers to both names.

Jude would do Caillou’s laugh when he was stressed. Once when I left him for two days to help my mother move he did the “Caillou is sad in daycare” episode for a week. Jude’s school had a name for it. I called up to see how he was after a rough morning. “Well," says Maggie, the teacher’s aide, “Well, he’s still Caillouing a little, but I think he’ll be okay."

Sometimes the references would be very subtle, and heartbreakingly poignant. When we were on the way to a new occupational therapist, I heard the nararator’s voice from the back seat, "Caillou was excited, but a little afraid, too”. One night on the way home from a late therapy session we stopped to look for an el train on a quiet Wrigleyville side street.

It was February, and the leafless trees shook in the wind.

“Suddenly,” said Jude looking up at the sky, “Caillou felt all alone.”

Perfect.

I remember, as a preteen boiling with angst and fury and desire, how a certain song would capture exactly how I felt, put all my murky muddled feelings into words. Song lyrics, poetry, art, that is what they do. Caillou? Poetry? Now I’m scaring myself.

I will say I am grateful for the little bald boy in his yellow shirt. (Jude wants to wear the same shirt every day as well, and I am sure this is no accident. Jude has five shirts, all the same color and design. Thanks a lot, Caillou.) Jude does have a poetic soul, I am sure. There's stuff in there that just needs a way to come out. I have seen non-verbal kids with autism create long sentences, even make jokes with their velcro picture books. PBS kids is Jude’s sign language, his pecs book. Last year he started substituting his words for Caillou’s, using Caillou’s sentence structure but changing the words to fit the situation.

“I don’t want to go to school” instead of “I don’t want to go to daycare,” from the show.

Now he only Caillous when he needs to get across a more complicated emotion.

Like, applying himself at therapy tasks, and finding them surprisingly enjoyable. “But I thought you didn’t like vegetables, Caillou.” Brilliant. I kiss him goodnight and as I am closing the door, a quiet sad voice:” I don’t want to go to bed, I didn’t find the treasure yet.” My eyes fill with tears. Ain’t it the truth, love. Not enough hours in day to find that proverbial treasure. We’ll try again tomorrow.

So, this fall, when Jude goes off to school early in the morning and comes home well past PBS kids time, I will probably turn the tube to Channel Eleven for Eden and let him watch.

Except for Barney. Oh my God, Barney.

Please. Don’t get me started.

I Like It. It Has a Good Beat, and Jay Jay Can Dance To It.

Jude loves Jay Jay the Jet Plane. The figure, the wooden one. We are on the fourth Jay Jay in three years. They tend to wear out from so much dancing. Let me explain.

Kids with sensory stuff do this thing calling stimming, which is short for stimulation. They do things to wake up sluggish parts of their brains. Which is why I can spot a spectrum kid a mile away. Coming out of the doctor's office with a sticker, holding it up at a weird angle and peering at it with one eye and the other closed. Back and forth, near and far with the sticker. Classic.

Jude holds Jay Jay in just that way , and Jay Jay dances to music. Jay Jay flies right next to Jude's eyeball and moves his wings in time to the song. Jay Jay is a excellent dancer, too, and I think he has a future in conducting. He really captures the feel of the music, whether it be classical music (Jay Jay just adores Vivaldi) or the background to a cartoon. When Jay Jay is worn down, and missing an engine, his movement is droopy and half hearted. When Jay Jay is brand spanking new, his movements are sweeping and grand. Apparently Jay Jay has bad days just like the rest of us.

When music comes on Jude yells NEED JAY JAY FOR DANCING!!! And we all join the hunt, rushing to find Jay Jay. I do try to keep Jay Jay handy, because you never know what music will be Jay Jay worthy. Jay Jay does not like Tori Amos or Neil Young. He likes country music (no accounting for some planes's’ taste) and to my husband's delight, Jay Jay can really get in to an industrial ambient piece. Don'’t even try to get Jay Jay to move to smooth Jazz, but Jay Jay loves the Ramones. Yea.

The truth is, I am supposed to be discouraging the kind of visual stimming that is going on here with our little blue friend. But when Jay Jay is triumphantly directing Beethoven's Ode to Joy and Eden is standing next to Jude with his fingers together, moving along with the music, expressing all sorts of feelings that can'’t be put into words, well, Jay Jay is all good with me. Rock on, Jay Jay. Rock on.

God Save the Queen

There are just so many hours a parent can parent per day. We have our limitations. There should be a warning light that starts blinking when our reserves get dangerously low. Then the kids will know to stay away. Run, save yourself. Go for help.

The other night, all I wanted in the whole, wide wide world was to watch a mystery program on TV. It was one of those convoluted British mysteries where if you are not riveted, glued, unflinching in your attention you will have no idea what is going on and it will just be people with bad teeth mumbling and shuffling around and the whole thing is pointless and you will have to change the channel and watch a rerun of girls with implants eating smoothies made with cockroaches and raccoon phlegm.

So you can see how important this was.

I announced it. I said, “I AM GOING TO WATCH MY SHOW.” Of course Jude and Eden were in bed so I just had to make sure that Don and Sage were going to leave me alone. I do want to add that I do not do this often, only when I am so mentally and physically trashed from therapy and doctors appointments and everything else that I forget that I am asking for the impossible, which is for the circus that is our lives to take a break for an hour. Isn’t going to happen.

I settle in to watch, comfortable on the couch, and I hear Jude throwing himself against his door, shrieking, like he is on fire, which in itself is not that unusual but I must investigate.

I pad down the hall in my slippers and open the door, which is hooked on the outside to prevent Jude from taking a walking tour of the North Side at 2 a.m.

Jude flees from the room, pantsless, as if a rabid pack of wolves is on his tail.

I follow him into my room, where he is sitting on the couch, panting, saying, "it’s an accident, it was just a accident" over and over.

What is, honey? Oh. He stands up and I see. There is a brown smudge on the couch. Lovely.

I put Jude on the potty and head in to his room with the Clorox wipes.

Don is standing over Jude’s bed, staring at the pillow. I come closer, afraid to look.

I look. There, sitting on the pillow for all the world like a mint at a fancy hotel, is poo.

Bigger than a mint, though, and not near as appealing.

I pick up the offending (and terrifying) object and flush it. Don throws the bedding in the laundry and makes the bed with clean sheets. I clean Jude off and we send him back to bed with a bag of Cheetos, yes you read right, I told you, I can only parent well for 10 hours and then things start to deteriorate. They kept him happy. I would have given him a beer if it meant I could watch my show.

I sit back down and I hear wailing from the other room. Eden is up. Why? Because Satan is alive and well. Don brings him in and apparently Eden has woken up because he wants a banana. Woke up screaming, for a banana. Okay, sit and eat your banana while I look up the synopsis of my stupid show on the net so maybe I can figure out what is up with Inspector Lynely who always looks like he has a headache in his eyebrows. I find that strangley alluring, if you want to know the truth.

Don puts Eden back in bed with banana in his teeth and we turn off the monitor because Eden wants to hang with us and does not understand the importance of rest, his or mine.

His rage at being exiled is audible without the monitor, anyway.

Sage comes in. Poor Sage. He always ends up being the last straw. I use up all my patience on his brothers because I know they can’t help it, and I just want a quiet moment, please God oh please, and I have hope that if no one interrupts me I will be able to follow the plot, just a little.

“Eden’s crying,” he says. “I know, honey, he’ll fall asleep soon.

But it’s loud.

Go tell Daddy.

I did.

Well, he’ll stop.

When?

Shhh

I need a snack?

Where is Daddy?

I don’t know’…

Find him!!
I can’t

Don comes in.

Sage needs his snack.

Can you get it?

What is there?

Look in the fridge!

Did you get milk?

Hush!

Sage:

Can I get my hamster out?

No!

Why not?

Because?

Why?

Then it happens. My head starts to spin and green vomit comes out. SHUT YOUR MOUTH!! LEAVE ME ALONE!!! ALL I ASK IS FOR ONE LOUSY HOUR, BUT NO!! YOU ARE ALL SO SELFISH!!!

Sage’s lip starts to quiver and tears begin to flow. I am ashamed, furious at myself, furious at Don, and more than a little ticked at God. It is so unfair. I want to be a nice Mommy, but I am daily pushed and pulled and stretched so far past any normal limits that I feel like I never get the chance. It really, really stinks. I am stupid, so stupid for setting us all up like this. In this moment, and others like it, I can see why people really lose it and do terrible, awful things. It scares me.

I turn off the TV, and Don goes to get Eden, who is still screaming, and I lay down on the couch and Sage lies down too and we pull the blanket over our heads. Sorry, I say, but that is lame, because I have said it too many times this week and I am afraid he will think I don’t mean it, but I do, I really, really do, if he could only know how much.

“ I’m tired, I say, aware of the whine in my voice Jude…Jude pooped on his pillow.” Sage lets out a snort. He tries not to laugh, but he can’t help it.

It’s not funny. I say, don’t laugh.

He’s laughing.

What did you do with it? He asks.

Well, I say, I sent it ..overseas.

What!? He asks incredulously. You did?

Yep. I say. I sent it to the queen of England.

Guffaw.

What did she do?

Well, the British Army intercepted it, and they saw it as part of an international plot to disgust the royal family , so they blew it up, but see they weren’t thinking, because poop, well, you know, it splatters..

And Don came in, and we are giggling under the blanket, and he sits by us, and says he is sorry about my show, what show, the stupid show, what a waste of time tv is, and Sage and I start to tickle him, and we are all screaming and it is way, way too late for that but who cares, really.

I remember being yelled at, and I held it against my parents, and swore I would never do the same. I try hard to remember the nice stuff they said and did, because I want Sage to remember the tickles and the laughter and maybe cut me some slack when he is a grown man with kids of his own, and thinks of a bungled plot to nauseate the Queen of England.

I hope that is what stands out for him, that I tried hard, and that I loved him.

I hope he remembers I loved him.

Father's Day

It was a good father's day, this year. We made a special breakfast and Daddy seemed content to watch the boys play in the wading pool, splashing and squealing in the sun. Sage saved him a flower and gave him a chart covered with stars he had earned in school, I made him some iced coffee. Life was good.

Sometimes I think about my father. He was a great guy; funny and charming. My sister and I adored him for what he was and hated him for what he was not: a father. He didn't know how to be one. He told good stories, he was larger than life, for sure, but he was incapable of putting us first.

I eventually forgave him, and anger turned to pity. He died in 1991, and I grieved for him, his life half lived. He lives inside me, that part of me that wants to tell jokes and pretend like nothing bothers me. The part of me that wants to charm those who love me into always staying an arm's length away.

I used to ask him about his father, who died when my father was a young man, about the age I was when my father died. My father could never bring himself to speak of him, the pain too raw thirty years later. I learned from my cousins that he was a kind, quiet gentle man who loved books more than farming. When the family's Tennessee Valley cotton farm began to go under he hung himself from a pipe in the basement. As a young girl I would go down there and stare at the pipe, and wonder how he could do it, leave us behind with such a brutal legacy.

I watch my husband with our boys, playing with them, being with them in a way my father never could with me. I realize I come from a long line of broken men, raising broken children. I will be damned if I will let my sons be raised with giant holes the wind can blow through, empty shells that can make you laugh but are filled with chaff and dust.

I wonder if my grandfather can see me. I wonder if he would have liked me. I wonder what my father would have thought of my sons had he not drunk himself to death. I hold my son and smell his hair and wonder if either one ever had a moment like this, two boys laughing in the sun, the other held tight with wordless contentment and joy. I hope they had that much, one perfect moment of love. I really do.

So Many Wishes

The dandelions have all turned to fluff, all at once. Last week they were a sea of yellow, a sure sign of spring, and Sage brought home crumpled handfuls of them, a gift I treasure as he is turning eight soon and may be too cool to bring home flowers in his pocket.

The weather is good, so we take the boys to the park. Jude likes to walk along the strip of park near the lake that has trees and a path that leads to the playground, the squishy one we always go to with the butterfly sculptures. He walks bent at the waist, swinging his arm in his own little happy world, which is okay for the moment. Eden is kicking happily in the stroller, and I am feeling good, better than I have all week.

It has been a week of tantrums, of Jude throwing things, of us trying to be firm and giving Jude ‘limits’, and teach him to adjust to the world, because I have fooled him, tricked him into thinking the world will adjust to him. I have run ahead of him, fixing, fussing, explaining, his whole life, to make sure he is never frightened or misunderstood. Now I am changing the rules, resigning as sherpa, forcing him to be less rigid and trying to believe it is the right thing to do. I feel mean and like a failure, and I hate making Jude act like everyone else.

I know it is pure selfishness on my part; Jude has a chance at a normal life. The trouble is I like him how he is, all secretive and mumbly and magical. But I won’t be here when he is fifty three to tie his shoes and interpret him to the world.

I stop and pick a silvery dandelion and show it to Jude and Eden. Look, these are wishes, I say and blow on one. Eden giggles as the seeds float away, but Jude tries to grab them. Come back wishes... he calls. Come back!!

It’s okay, I tell him, there are lots more wishes, look! I say, and there are, whole fields of them on the way to the park, but Jude is sad, and I can'’t make him understand.

Jude’s social worker calls me ‘invested.’ I am invested, to the point of disappearing. I live and breathe him, and when he is frantic, furious, screaming, throwing things, beside himself without words to ask for help, I feel I am drowning, silently sinking to the bottom of a murky pond, too overwhelmed to make a sound.

I wish I could step back, just a little. I wish the world was such that Jude could dance through it and be appreciated and understood. I wish I was better at this.

I wish he could tell me why he is so afraid. I wish I could make it go away.

The next day I am on the school bus waiting for Jude to come out of school. I must ride home with him because he is suddenly, inexplicably terrified of the bus. I watch as Jude is carried to the bus, flailing and screaming, and he arrives and sits in my lap, sweating and exhausted and gulping for air. The driver turns towards home, moving along the lakefront, and the wind is blowing and dandelion seeds are everywhere, floating around the bus and past the windows. Look at all the wishes, Jude says, with his forehead pressed against the glass.

Yeah, I say. So many wishes.

What It's Like

Some days I feel like crying. Other days are magical, filled with wonder and love and discovery. Some days I am busy with living and forget for a little while that my child is different, and others are not forced to confront the issues of life and death and the definition of worth every day. The best days are a mixture, I cry a little, laugh some and remember how blessed I am.

It is hard to share my sadness; I never want to give the impression that I wish my child were different, that he is defective or lacking somehow. He is what I wanted, whether I knew it or not. He is just as much an answer to my prayers and hopes and dreams as your healthy child running on the playground, only God had a different idea about what would make my life complete than I did. Sometimes I struggle with letting go of my plans and imaginings, some days I look at the world and then back again at my little boy and wonder how the two might get along, but just like you, my child takes my breath away when he smiles.

There are times I feel I have an advantage, I have been freed of the illusion that things will always be okay, and I never take one smile, one hug, one moment for granted. We all love our children, but there is a capacity to savor that I might not have had. What a gift.

So, don't feel sorry for me, and don't tell me to be strong. Enjoy my child with me, rejoice with me, cry with me. See the magic behind my little boy's eyes that I just can't find the words to describe. That is understanding I need, and the very definition of friendship, hope, and love.

Pennies

We are always longing, my family and I. We live with a beautiful mysterious creature who reveals himself, just a little at a time. Appearing and disappearing. I thought perhaps I was the only one who sat and wished, wished and wished to hear what is inside of my enigmatic little boy.

I used to long for my husband, when we were single, and I thought he loved me but just wasn't sure enough, or brave enough, to let him near me. But I would watch him move and be and talk with friends, and I longed to know him, to hear what his heart had to say.

Sage was asked to draw a picture of his goals at a workshop. His goals were to get more stars at school, and there was a drawing of stick figures with boxes. I asked him what it was.
"That's me and Jude," he says, looking down. "What are you doing?"

"We're talking on walkie talkies," he says.

We are all wishing, and longing. Waiting.

Last night I put Jude to bed, and as I left, I heard him call, "I love you.." He had never said it before, and I turned quickly to look at him.
And then he started to sob.
And sob. Heart breaking, gullywashing sobs that had nothing to do with going to bed. I held his head and tried to get him to talk, tell me why he was crying.

Even if he could tell me, there may not have been words. Maybe he's been longing, too. We
are all wishing and waiting. Little by little, wishes are coming true. We all just have hold our pennies, and wait.

Whee

It is easier not to dream. Am I a coward because it hurts to much to imagine what could be? How many times have I sat in some cramped little office, trying to breath, barely resisting the impulse to grab the psychologist, pleading, oh God please, just some good news, just something good, please, and I can tell by her sad smile that there will be no hope today, no none for me. Dreams are for other people with healthy genes and the luxury of intact denial mechanisms.

A month ago my fondest hope was that Jude would be content to let others care for him always, and find some meaning in simple existence. I have always sensed his intelligence, felt it but couldn't see it, like the wind, like air, like God. Couldn't prove it, but I knew it was there.

Jude has calmed some, and has been letting the rest of the world see just a glimpse of his potential.

Now not one, but two people have tossed me a crumb. No, a whole loaf. They see it. Jude is smart, Jude has a future. I am thrilled, and terrified. I am slowly climbing the first hill of the roller coaster, not sure I can handle it, but it is too late to get off.

God help me be brave enough to dream, to hope, to let Jude try to find his way. Help me not to settle for good enough. Help me to throw my hands in the air and scream with delight. Because after all, I am only just along for the ride.

Ghosts

I can't make a hamster mansion today. Wanted to. I wanted to play Sorry and talk about Pokemon and snuggle under blankets and whisper secrets. I really did.

You were the first, you know, the first one to take my breath away with your smile and make me feel like no one else could ever be as lucky as me. We used to sleep until noon in my bed, and you would stir and fuss and find me with your hand, and blissfully tumble back into your baby dreams.

You were why I wanted more children, our first years together were perfect, just perfect, and I wanted to add to that. Your brother had other ideas, though, and God did, too. Your brother screamed and your health problems began to emerge, and each day was less idyllic than the last. One more rugged pregnancy and health problems times three made sure those lazy days were gone for good.

Does it matter that I miss you, that my heart pines for you like a long lost first love?
You stand in the doorway with the game you wanted to play, watching me change a diaper while on the phone with the doctor and I catch your eye and give you an apologetic smile. I see sadness in your eyes that a note in your lunchbox just can't fix.

I love your brothers like oxygen, but there are times I wish it was just us again. Sometimes in my dreams I smell your two year old hair and watch you play in the yard with your imaginary friends, pooh bears of all different shapes and colors and sizes. Then I notice it is getting dark, and my belly is starting to swell, and I know our time alone is coming to an end. We say goodbye to your ghostly playmates, and I wonder if we will ever see them again.

That time is not lost to us Sage. That playground is right here in my heart, and I am keeping it safe, for when everyone else is asleep in bed, and the summer night is still, and we can go out and run among the ghosts of childhood once again.

Save Me

It is your intelligence that has saved you, says my dear friend. I take this as a compliment, and it is true, a little, that having a natural ability to comprehend things like Ristocetin Cofactor and autosomal dominant genes has made this little journey a bit easier. Later that night I knock on her door, though, and she stands there in her slippers looking at me quizzically.

God has saved me, I tell her, knowing how sanctimonious it sounds, but it is true, and I must say it. God has saved me.

Laying on the floor begging for mercy, save me God, please, from despair and bitterness and self pity and self doubt. Give me the courage to let my little boy run and climb even though the slightest bump could send us to the emergency room. Help me not to hate my neighbor because her child can talk. Help me to say my heart is broken instead of insisting things are okay.
Help me not to hate you God.
Help me not to miss it, the wonder, the joy, because it isn't what I planned.

Help me to say thank you.

That is what has saved me, falling to pieces and landing in loving arms. Miracles that are better than water turned into wine, the miracle of my sons, and mourning turned into dancing before my very eyes. So, I guess I don't care how it sounds. God's love has saved me, not from my children's health problems and bad genetics. God has saved me from the poverty of my soul.
He has saved me from myself.

Love Train

We can see the train from our window, and the Uptown theatre, too, when the sun sets behind it and makes our room all golden like nothing will ever make us sad again. Jude calls it the Love Train, he announces it so we know it is going by otherwise we’d miss it for sure. Tonight we will ride the train, Jude and his daddy and I, but Jude won't know that until we get there.

We walk past sad people and dirty snow and smell the fumes from the cars on Wilson Ave. When we get near the station Jude is so excited we can barely hold on to him and as we start to climb the stairs we feel the thunder. Jude becomes frantic, it’s the LOVE train and we are missing it, so HURRY and when we get there and the train is pulling away it is almost too much to bear. Another one is coming, I say, in just a minute but Jude doesn’t work like that. He cries until the next one comes and when it gets close we hold him tight, because there is nothing to stop him from running right onto the tracks.

The train takes off and Jude is flapping and yelling THIS IS GREAT and something about Thomas and Gordon at the top of his lungs. People look up, their damp dull reveries broken for a moment and some of them smile but most of them stare for a moment and look away. I hate them for their plodding mediocrity. They seem so small just outside Jude’s sparkling circle of light. I get to stand in it and they don’t. So there.

When the train slows down for Sheridan Jude starts to howl because he thinks the ride is over, and continues to howl until the train gets going again. He does this at Addison, and again at Belmont. No one is smiling now. These lumps of dreary humanity don’t get how great the ride is, so they don’t understand the anguish at the thought that it might be over.

We arrive at our stop and haul Jude kicking and screaming off the train. We spend an hour or two with some therapists who want him to string things and match colors and put his own socks on and quit screaming so much. We brought him here, it was my idea, I wanted them to teach him to participate and learn and be more like those fools on the train. We are all glad to leave and I suspect they are happy to see us go. Jude is far more subdued on the way home, looking out at the moon behind the dark buildings and bare trees. I can tell we are getting to Wilson because the trains always slow down past the massive cemetery, out of respect for the dead. Mustn’t wake them. Jude leaves the train without a fuss this time, perhaps realizing it just isn't the place for him.

Good bye love train, you have proven too much for us today. We will ride you again someday, when we are calmer, braver. Until then we will wave at you from our window in the golden sunlight, and yell out your name as loud as we can.

Grown Ups

We were just babies then, we look so young in the picture. It was only eight years ago, but it seems like a lifetime. Don is wearing his Galactic Cowboys tshirt and I am roly poly with shiny curls eating a popsicle waiting for our baby to be born. My eyes sting when I see how innocent we were, happy with the irrational expectation of children that everything would always be okay. We lived in blessed ignorance of specialists and therapists and what it means when doctors avoid your gaze and look at their shoes.

I am a grown up now, with gray hairs and a serenity and connection with God I never thought possible. My life is a paradox of joy and grief and I have a hard time explaining that to people. I suspect my closest friends understand that everyday my heart breaks and breaks again, with beauty and sadness and sweet and bitter tears mixed together. That is my existence, and at the end of the day I go to sleep with a prayer of thanksgiving. I have few complaints.

My husband seems to have stayed the same in many ways. He is still just as excited about a new band he hears, he is still in love with me and the kids. He is just as optimistic and sure that his music will go somewhere as he was in 1997. He is kind and willing to do whatever is put before him. He is still the first person to offer his seat to an old lady on the bus. He still likes the Galactic Cowboys.

At times I have resented his perpetual youth, his cheerful optimism, his ability to be in the moment and to always believe the best is just around the corner. I feel my soul has aged, and his has not had to. I wonder if he misses the old me. Sometimes I do. I wonder sadly if he wishes he was still single, going to concerts, making music in his studio in the basement.

Last night we drove home from a training session for a new therapy that could change our developmentally disabled son's life. It involves long hours of hard work and consistency, in addition to all we do now. At the very least it could teach our son independence, and possibly harvest what we know is in there, a beautiful mind to match his beautiful face and soul. I want this so badly I can hardly breath, and I want to tell my husband, so he knows we must do this.
He will have to get serious, I want to tell him. Grow up. Take on some responsibility. I have this speech prepared and I turn to him, and I see what I have not seen before, steely determination to match my own. Like our son there is more to my husband that meets the eye, and perhaps me too. Maybe that girl with the popsicle isn't completely gone, either. Maybe there are irrational expectations of happiness yet to be had.

Not Even Close

Some things are easy. It is easy to love Jude, to gaze at him and wonder at his china blue eyes and listen to him mumble mysteries under his breath. I love his hand gestures, and how he squints to look at things in the light.

I don't mind explaining him to people, or having no time for myself. Brushing his arms and legs, massaging him, shaving ice with the Spongebob snow cone maker so he has 'snow'; I could do that for the next 50 years and never complain.

This is what is hard: Saying no. Making Jude do what is difficult for him. Listening to him cry and not being able to console him. Putting him on the bus and watching him ride away to have fun and learn and play with someone else. Loosening my grip, just a little. Remembering that ultimately he doesn't belong to me. I want to take this gift God gave me and hide somewhere with it and not share it, ever, or let it change.

I guess we are getting into the true meaning of love. Do I love Jude more than myself? Is what he needs more important than what I want, which is having my boy near me and happy always?

I think I understand more everyday why God chose to use His only child to show us how much He loves us. I am just not there yet. Not even close.