I want things to be a certain way. Like everyone, I have expectations. Every Christmas we go to the tree lot, and pick out the biggest tree I can possibly fit in our home. Short needles, no Scotch Pine. White lights, and the ornaments must be just so. Truth be told there are many things in my life that are not just so, so I work hard at making this, well, just so.

This year a friend offered us a tree someone sent her as a gift. Strapped for time and cash, I agreed to take it off her hands. It should be okay, I think, after all it is being mailed here fresh from Oregon. She tells me it will arrive in a day or two.

I forget about the tree, busy with my son's Christmas program and other holiday details. I try to keep busy since the Christmas program is hard for me. My older son gets up and sings with his class. My second son is two years younger, and the class he would be in gets up and sings without him.

I live communally, and we home school our kids. We know well ahead of time who will be in our kids' class. The women who are pregnant and due all about the same time form an informal club of sorts, we compare notes on our pregnancies and commiserate on our discomfort, we count the kids that will be together in school and when the babies are born we discuss the boy/girl ratio.
We nurse our babies together and take them to their first day of preschool together. They will be together for the next twelve years. It's a big deal.

Jude has a wonderful school he goes to, it meets all his special needs and more. It is a nurturing, happy place. He doesn't play much with the kids his age, that takes language and social skills, which are a mystery to him. He lives in his own little world and comes out to give us hugs and include us every once in awhile, and when he does we feel very blessed. I have decided I must wait for him to want to be out here on more of a full time basis, and trying to force it doesn't work. It gets lonely waiting. Sometimes I feel I am waiting for him to come home from a long, long trip.

So I am trying hard to look forward to the Christmas program, and enjoy my seven year old's part in the songs. I think of ways of combating the sheer agony of grief when the little cows and sheep and shepherds and angels make their way up on stage and sing about happy, beautiful things that happened a long time ago. Last year I had to shut my eyes and hum, and block out the cute costumes and beaming parents, and still it sounded like a funeral dirge mourning all my hopes and dreams for Jude. "You have," I tell myself, "two other little boys who will do all those normal, happy Christmas-y things that you can video tape and brag about and cherish. And You have one little boy who does magical things no one else gets but you. Is that so bad?"

It isn't, really, but my heart is breaking, just the same. I tell myself to buck up. I ask God for a little mercy, just a little grace. I ask him to forgive me for the sin, of, I don't know. Thank you for all three of my boys, God. Help me not to cry.

On our way out the door, the phone rings. It is Jude's teacher. She wants me to know that Jude sang the songs in music time today, and took his turn ringing the bell. Something I thought was years away for Jude. Apparently he decided to stay a bit longer today. This is nothing short of a Christmas miracle, and I whisper a thank you and go to the car where everyone is waiting.

We arrive and take our seats, and Jude's class heads up with their little costumes, being cute and being filmed and waving at their parents and picking their noses and yelling their songs. And I look around at my friends and I do not envy them. Another miracle. I feel at peace.

The next morning our tree arrives. It is not big, it is short and wide. It is like the Herve' Villechaise memorial tree, but I am inexplicably charmed by it.

So after dinner we get out the ornaments and I am thinking Jude might let us help him put one on and then he can go to bed. As I said, I have given up trying to make him participate in our earthly rituals. He has places to go in his mind, and I can respect that, I just miss him, that's all.

Jude sees the ornaments and goes right over and gets one and puts one on the tree and smiles at us. Then he gets another, and another. He is putting them on the tree, and admiring them, and talking about them, to us. I pick up some tinsel, and then, overwhelmed, I sit down on the floor, and sob. Jude is still decorating the tree, and having run out of ornaments is now putting ordinary household objects between the branches. The box of metal hooks, a magazine, the baby's sippy cup. Our tree looks quite odd now, and Sage is bothered by this. Usually there is no crying and no magazines involved in trimming the tree. He sits on my lap, and I whisper in his ear that our tree is perfect, and this is the best Christmas ever, and someday he would understand that. He doesn't seem convinced but seems willing to let it go.

It is a different sort of Christmas message, that maybe things that are unexpected and seem less than perfect can be unspeakably beautiful if we can let go of what we thought was supposed to happen. No one thought the Messiah would be born in a stable surrounded by smelly animals, and grow up to hang out with losers and thieves. Maybe God chooses things that we think are weak and faulty to show his power and love, and maybe if we take a deep breath and try to be brave and let go of what we think we deserve for just a moment, well maybe, God's gifts put our best dreams right to shame.

Merry Christmas.

Too Wonderful

I have absolutely come to accept that there are no answers on this earth for why awful stuff happens. God is not offering, nor does he owe me, any explanations. That's okay. I can let that rest, and move on. I don't really need a reason. I just need some mercy, and some grace, a little peace God, if you please, so I don't bang my head against the wall and run around like a rat in a maze looking for imaginary cheese.

Sometimes I wonder, though. I wonder what God thinks of my best guesses.

He gave me disabled children to help me grow closer to Him.
So I can help other parents.

He chose me to be their mother because he knew I would do a good job.

Random stuff happens, He set stuff in motion and now He has no choice but to sit back and not interfere. He feels bad and all, but what's done is done. Rain falls on everyone and all that.

But wait...

Maybe my little boy stares at dust sparkling in the sun and talks in riddles because God made Him that way, because it pleased Him to make something beautiful, and maybe I am honored and blessed just to stand back and breathe the same air. Maybe little boys whose shins and hearts bruise far too easily are the best kind, and God's very best works of art are bestowed on me and I am just too consumed with my lame hopes and plans to see it.

And so I start my day, this is me God, not concerning myself with matters too great for me. My soul is still and quiet. Maybe things aren't too awful for me to understand. Maybe they are just too wonderful to comprehend.

First Day of Spring (you're doing it wrong.)

In the winter the days seem to drag on forever, each bleeding into the next. It is cold and dark and my kids are eating cheetos and watching TV, and I wonder where I went wrong. Jude is screaming and Sage is whining, the place is a mess and WHY didn't I become a nun?

Because I liked men too much.

All I ever wanted was a happy little family. No one could have wanted kids more than I did, and I reasoned that since we all almost bought the farm during three horrific pregnancies and births my deep gratitude and wonder at our survival would prevent us from slipping into the dull aching pain of helpless mediocrity I grew up with. I admit it. I wanted a happy family.

It seems naive now, in the midst of a cold nasty winter. I makes me want to cry. I try to laugh instead. It doesn't work. I feel like a failure. Our lives are a jumble of doctors, hospitals and therapists who tell me I'm doing it wrong. I look at my developmentally delayed four year old, shoving ramen in his mouth as he watches Barney. They're right. I'm doing it wrong.

Our car is broken. We have to take the El to therapy to be told I'm doing it wrong. At least the weather is nice. Actually, we realize as we step out onto the sidewalk, the weather is AWESOME. Eden is in the front pack and Sage and Jude are holding our hands and skipping along. I take a deep breath and think I may just live until my next birthday.

My friend Joseph from the halfway house sees us and walks us to the El. He falls in step with us as if he is one of our kids. He is happy, too, to be outside in the sun.

When we get to the station Joseph blesses us with a chant and some hand gestures and lopes down the street. We manage to get through the turnstile without injury and wait on the platform. Jude flops down next to a large Hispanic man with heavy metal hair and tattoos and takes his hand. "Sorry," I say. "No problem," he says with a smile.

The train ride goes by uneventfully with Jude plastered against the window. We get to the clinic and Sage and Jude and Don all race up the stairs. Jude somehow manages to get through the session without too much screaming, and I manage not to yell at the therapist when she tells me I am coddling him and need to push him more. I tell her his hair smells like summer and my heart dances when he laughs. I am not sure she knows what to make of this. This day is shaping up pretty nicely, though, so I realize I don't really care.

On the way home the train is crowded by young professionals returning from their McJobs and such. They are all looking at us and smiling, and I wonder why. Don't they see what a pathetic little band of medical and emotional issues we are?

Jude stands up on his seat, inspired by the el ride, and yells, POTATO! POTATO! PO.. TA...TO!!!! at the top of his lungs. Now they know, I tell myself. They understand how cloudy the genetic pool is. But the yuppies love this. And they are still admiring my boys.

Jude, exhausted from his outburst, sits down and lays his head on the lap of a young well dressed gentleman next to him. "oh, I say, I'm sorry. He likes to touch people. He hasn't gotten that personal boundary thing down yet."

But the guy is smiling. "Wouldn't it be nice," he says, "if we were all more like that?" I think, wouldn't it be nice if people were all like you, but I don't say it. I sit back and have my little epiphany.

It's all about death and resurrection, I remind myself. Winter sucks, and so do bleeding disorders and autism, and so my pathetic dreams of a perfect little family are crucified.

But Spring is here, and God is it beautiful. All these people are smiling at us, not because they can't tell we're defective, but because we are a absolutely beautiful little family.

I take Eden and Don picks Jude up because he has fallen asleep on nice guy's lap. We wave goodbye to all the nice yuppies on the train. They wave back and smile, because we are such a lovely little family unit. Joseph is there to meet us and we walk back to our house. Sage tells Joseph,not unkindly,"you're poor." Joseph happily concurs. He sees us to the door and heads back to Wilson Care.

There are dull, pathetic days ahead, I know. But days like this remind me. God's gifts put my silly little dreams to shame. I can take days of tantrums, ramen stuck to the walls, late nights at the ER and God knows what else as long as I know. Easter is on its way.

When Sage was the age Jude is now, I talked to him about God all the time. Told him who Jesus was. Read him Bible stories. I still do. He is going to a Christian school. Communicating the principles of our faith to him, explaining why we live this way and why we do what we do has been just as important as food and sleep and safety.

With Jude it is different. Language is garbled as it reaches his brain. How do I explain the difference between God and Barney and Elmo? The abstract just doesn't play. Singing bothers his sensitive ears (my singing, anyway, because it is off key.) I lie awake at night and wonder if my little boy will ever comprehend the basics of the gospel.

I think it is me that is having trouble thinking outside the box.

God's love surrounds Jude. In human form, was a child ever so loved and accepted by so many people? To be loved for exactly who you are, to kept safe, to be nurtured, is that not God's love?

I close my eyes and picture the Holy Spirit surrounding Jude like a fragrance, so tangible he can taste it in the air, in his bed, on his school bus, as he stands in the window waiting for a glimpse of the El through the buildings and the trees. How silly, how arrogant to think the only way he can experience God is through my words.

Jude was knit together in my womb and by human standards perhaps he is somehow defective; neurologically impaired, developmentally delayed, but I know in God's eyes he is perfect, exquisite even, and in mine, too. His mind may be a tangle of misfiring synapses but his soul is beautiful. So beautiful, angels weep with joy.

Maybe I am learning about God's love... from Jude.

Cake

I can never quite figure out if it is okay to be angry or not.
I am blessed, no question. Three gorgeous kids, a safe place to live, a kind husband, and we never want for anything.

But sometimes it is hard, really hard. Sometimes I observe other families going through life, enjoying their kids. It never occurs to them that they are fortunate that their kids are not in pain. That their kids can learn without a struggle. That they have time for everything.

They never wake up and wonder, is this the day? Is this the day my breathtaking, magical child falls down and is never quite the same?
I have to remind myself that God is good. Sometimes in the face of contradictory evidence.

Baker Baker
Baking a cake
Make me a day
Make me whole again
And I wonder
What's in a day
What's in your cake this time?

Self pity is just that, a pit, a quagmire. I stick a toe in to test the water and I am lost, pulled under by the muck. I have to keep moving. Keep focused on what is beautiful, so I don't miss it. I just don't want to miss it.

A Nice Place to Visit

We take Jude to therapy. Occupational therapy to help him be calm and learn life skills. Speech therapy to teach Jude to have a conversation instead of speaking in his TV program code that only makes sense to us. Behavioral therapy to help him be more 'organized.'

I am all for therapy, really. Jude has come a long way in just a few years. It has helped us to help Jude. But there are times when I look at my son, and I wonder what it is like in there behind his eyes.

It is not as if Jude has no imagination, and the only time his brain is working is when he interacts in a way that makes sense to us. I am convinced that there is a whole world in there, a magical place that he created since our world is so hard for him to decipher. We spend so much time working to get Jude to understand and act appropriately. I just wish he could tell me what he is thinking.

I know a few of the rules and bylaws of Judeland. Wheels and transportation are everything. Patterns are important, too, and the color red is all over the place. Shaving cream and hairballs are outlawed, and hair clippers are the stuff horror films are made of.

I like to think it is pretty in there, and it must be fun, otherwise it wouldn't be so darn hard to get Jude to come out. I like to visit, but my visa only lasts so long, and then I am deported. I guess I need to learn more about the language and the culture.

Today is Valentine's Day. A few of our friends' kids gave Jude Valentines. I was pleased they remembered Jude, but Valentines are not big in Judeland.

Early this afternoon my husband brought me a bouquet of flowers garnished with a plastic heart on a stick. Jude gasped when he saw this, and took the wand out. He waved it around, and closed one eye to look at it through the other. Laughing softly, he did a dance with the wand, holding it up in the sunlight streaming through the window.

I sat on the floor and watched, wishing I could see what is so fascinating about the plastic decoration. I wish for just one moment I could see things through my son's eyes, see what he sees that make ordinary things beautiful.

"Hey," I say to my son. "Can I come visit today?" He turns and gives me a grin. "I promise not to stay too long," I whisper as he climbs into my lap. He holds the heart up to my eye so I can check it out. I kiss him on the forehead, and I'm off, for a little vacation in the Land of Jude.

I should be cleaning up. There are diapers on the floor and coffee cups with the dregs of my morning fix in them are sitting around, silently accusing me of domestic inadequacy.

I spent the morning watching Eden trying to roll over. This is a Big Deal. My four year old has developmental delays so I am watching Eden like a hawk. I know Eden has a bleeding disorder like my oldest. Who cares. Seriously. Bruises and swelling are a picnic compared to wondering if you will ever have a conversation with your child. Ever.

I walk a fine line. I don't want to just survive my days. It is hectic to be sure. Crazy even. I wonder if we were all 'healthy' and 'normal' (define these, please) would my days be stress free and peaceful? Probably, having nothing to compare it to, I would feel harried and unappreciated.

I do think I have a more intense appreciation for those little moments. The other day when Jude woke up he looked at me in the eyes and said 'I miss you.' He expressed an emotion. My friends are patient as I tell the story again and again, tears in my eyes. He missed me. The fact that it is wonderful and sad, too, is not lost on me.

There is a commercial on TV right now, for a learning center, where a boy hands his mother his report card, as a birthday gift, and as she starts to cry, so do I. My usual cranky cynicism is out the window. The baby is four months old now so I can't blame it on hormones. I recognize what it means to watch my child bravely struggle to master skills that come as easy as hair growth and breathing to the rest of us. At the age of two, three four years old Jude was facing his fears and working like a dog to be a part of a world with rules he could not begin to understand. Kids should not have to work hard. They should be eating popsicles and watching cartoons.

So, I walk a fine line between trying to keep things 'normal' and savoring each moment like chocolate. Feeling cheated because I can't read Jude a story and thinking I wouldn't trade the moment where he sings 'the wheels on the bus' (he did, he really did) for all the normal milestones in the world. Life is such mixture of triumph and sadness. I just don't want to miss it because I am cleaning and cooking and wishing our lives were like everyone else's.

The Penelope Tree

It is hard to be reverent about dead hamsters. There is something so dark and funny and macabre about their stiff little bodies; recently chubby and furry, stupidly plodding away at their wheels convinced they are getting somewhere. But I look past this sad, comical carrion to my five-year old’s big wet eyes and know a certain amount of decorum is in order.

He is dictating a letter, to put inside the baggie that will be the hamster’s coffin. "Here lies Penelope," he says, his voice (and my heart) breaking. "She was a sweet, good hamster. Rest in Peace." He learned this from a mock funeral for a dead bird found during recess at preschool. He also learned that worms eat dead bodies. This information upset him and has been a theme is his colorings, imaginings and dreams lately, and I know he is thinking of it now.

“Sage,” I say gently. "Worms can’t eat through plastic." I avoid my husbands’ disapproving stare. I kiss Sage on the forehead. "Daddy will put you to bed." Mike and I are going out to bury Penelope.

Mike is standing in the hallway waiting. He and I exchange pained expressions, trying not to cry or laugh. As we walk towards the elevator the door opens and Sage calls out: “Did you double bag her?’

"Yes," I say, in a solemn tone. But that is it. Mike's nose makes a noise behind me. We are giggling as we get on the elevator and by the time we reach the lobby we are leaning against the walls, howling.

Why is death so funny? I recall laughing at the funeral home when my father died. The funeral director must have thought my sister and I had murdered Daddy. I can’t remember what had set us off but it was so hard to stop. All that emotion has to come out somehow, like a burst container in the microwave. It oozes out the cracks whether you want it to or not.

Mike and I walk to the park. It is cool and foggy. I have brought the gardening tools I use to plant marigolds in my window box every mother’s day. I start to dig but my hand gets tired so Mike finishes the hole. I want it to be deep so no dogs dig up Poor Penelope. Mike comments that there should be lightening and I should be standing over him with a lantern. That almost gets us going again, but I resist the urge and try to be somber, for Sage’s sake.

We put a stick in the dirt to mark the grave, and notice that an unmarked police car is making its second pass. That is our cue to head home.

When I get in I go into Sage’s room and quietly climb into his bed with him. I can hear Jude snoring in the bunk above us. Sage sniffles and I turn and embrace him, smelling his warm hair. I love his hair, it smells and feels exactly like this scratchy green sweater I had in junior high.

"Why don’t we think about good things that Penelope did?" I whisper. Sage recounts her many escape attempts and the way her behind looked when she ran around in her little plastic play ball.

After a minute I realize he has fallen asleep and I lie there thinking about things can be sad and funny and terrible and good all at the same time. If I had my way my children would never hurt, never shed one tear. I hope my son learned from his experience with pet death that love is worth it, that removing your heart from its protective plastic wrapping means it will get scorched and bruised and left out in the rain, but oh God it is worth it, to love, just to quietly and fiercely and joyfully love.

Yesterday Sage and I walked to the place in the park where Penelope lies. What I hadn’t realized that night was that we buried her under this fabulous tree, very old and knotty and twisted. The stick was still there, after all this time. Except for a few beer cans it was just as we left it.

"Are you glad we came to see it?" I asked, worried that we might have resurrected the pain of poor Penelope’s demise.

"Yeah," said Sage. And I could tell he was. We walked home, holding hands and swinging our arms, and talking about What Hamsters Do in Heaven.

Ah, some people have all the fun. Today I spent my time comforting Eden, my four month old, while people stuck him endlessly with needles trying to start an IV for a procedure. Oh, and I couldn't feed him. The pleading looks he gave me made me want to throw a chair at a nurse. Any nurse would do.

I have spent so many hours like this, helpless, trying to be brave, trying not to swear under my breath. I get so mad. I just want to have a regular little family that reads stories and eats dinner together. Would I appreciate it? God I hope so.

I force myself to think about the mom whose kid has leukemia, the woman in Africa whose child is starving, my friend whose husband left her and is living with some woman named Peaches. I don't have to explain to my kids why Daddy lives somewhere else now. Take a deep breath. It isn't that bad.

What do I want? What can I reasonably hope for?

I want a day on the beach, lots of sun. My kids are laughing and playing. No one is hurt, or sick or frightened.

I remember waking up once, before I was married. I was only half awake, and I could see flickers of candle light on the walls, and snow falling outside. I could hear the voice of my soon to be husband out in the hallway, and I fell back asleep, feeling warm and safe and loved.

Eden just woke up and looked at me, and went back to sleep with a dreamy smile. That is what I want for my boys, to wake up in the middle of the night, and never have a doubt that they are safe. Safe and loved, always so very loved.

Here We Go

I listen politely as my friend recounts her daughter’s developmental triumphs. Everyone does it, bragging about their kids. I do. But today I do not feel like listening to this witty anecdote. I turn away, and mumble an excuse. My son and I head home.

My son can’t talk. Well, he can, but it is mostly jargon and bits and phrases from TV shows. He is three, and he is in speech therapy. He has mysterious but severe developmental delays. He might catch up. He might not.

I don’t get it. I close my eyes and tell God. “I don’t get it.”

My son is beautiful. He takes my breath away. I see light in his eyes. But I want to talk to him. I want to read him stories; I want him to go to preschool. Have friends.

Scriptures come back to me. Jesus heals a blind man. Someone asks him why the man was blind. Whose fault was it?

Jesus says it’s no one’s fault. It’s so God can be glorified.

Okay, God, I think, be glorified. I try to believe.

When Jesus was crucified, the disciples didn’t get it. Dreams die, but something beautiful gets resurrected. I can see the parallel here. I write down all my expectations, dreams for my son. I tear it up into little pieces. I open my window and let the pieces fly, swirling around on a blustery fall day. “Here,” I say, my forehead pressed against the window. “You can have this.”

I hear my son’s voice behind me. “Snow!” he says, delighted. I pick him up and we watch the pieces together. I hold him tight. “Okay,” I tell God, “be glorified. I am waiting for Easter. Turn mourning into dancing.”

“Here we go!!” says my son. “Yeah,” I say. “Here we go.”