Vacation

It has not been an easy summer. My mother has been ill, Eden’s joints have been swelling and bleeding and Jude has been flying into massive rages, and I am not sleeping.

I wake up at night and stare out the window, too tired to read but too terrified to sleep.

The idea of piling everyone including Grandma into the car and driving even a few hours away from doctors, therapists and our mechanic produces more panic than the relaxation is worth, as far as I am concerned. Jude might fall in the lake, get lost in the woods. Eden might bleed and the yokel doctors will give him cryo. The car might break down causing Grandma more stress than her blood pressure can take. Who in the world is scared to go on vacation?

I am.

Sage wants to go, he comes in my room long after he should be in bed and wants to list the animals we might see on our long walks alone. Don wants to go, he seems to think that we are going on some romantic getaway. This is pure delusion but I am going to pack, anyway, and hold my breath. I send out an email for intercessory prayer, as if we are headed in for major surgery.

The trip down goes surprisingly well, and the teal loser cruiser we call our own (even though we have ten more payments left on it) does not break down. We don’t unpack, we just put on our bathing suits and run down to the water, everyone except Grandma who is content to watch the Andy Griffith marathon on cable. Jude is so happy, it is like he is home when he is in the water, maybe he was a merman in another life. He splashes and yells and makes up games that only make sense to him. Eden wants to be held and is sure there is an evil dolphin in the murky water but he is good if we hold him above the surface. Sage and I swim out past the ropes and tell stories about his hamster having parties that bring the police on a noise complaint while we are gone. Just for an hour we remember how much we like each other, how fun it is to be us. We are nice, and funny, and we really love each other.

Oh yeah.

2.

No one will sleep. God why won’t they sleep? Jude had to be drug in from the water all pickled and smelly and kept trying to make a run for it. When the sun went down, he went to the window, and said, Goodnight lake. See you tomorrow. Which brought tears to my eyes. I thought he was settled, but no. It is midnight, and he is kicking his door, demanding chocolate pop tarts, and this is not our place, so we cannot ignore him while he makes dents in said door, so we let him out. Now Eden is up. Sage comes in. Grandma is snoring in her room so we are okay on that account. We all pile in the bed my husband was hoping could be, well, not a family bed and I can’t sleep because what if we don’t hear the little alarm we put on the front door to let us know that Jude is on his way to commune with nature without proper supervision? Everything is so damn complicated so I move the table, some chairs and an ottoman (Grandma calls it the autobahn, that makes us laugh) in front of the door and balance Sage’s rocks on top of it so we will hear. Don comes out and looks at me as if he is already making my appointment at the free mental health clinic. I am sleep deprived and not in the mood for implied criticism so I tell him if he does not care about the safety of our kids he can a. kiss my butt, and b. sleep on the couch that we both know is full of wolf spiders, which is his fault, too, but I can’t remember why. I go back to bed and realize Sage heard that. I lay awake thinking I never should have gotten married, let alone have kids.

3.Grandma loves Wal-Mart. There is one in the next town, and a dairy queen, too, so she and I go there while Eden is napping and Don is swimming with Sage and Jude. We have fun but I am scared that Don will let Jude drown. We are in the drive through for dairy queen and my mother says, like, fifty times, I want a marshmallow sundae with just a SQUIRT of chocolate, just a little squirt, not a lot, a squirt, Rebecca. Rebecca? Only a squirt, and as I am ordering she leans over and says, I only want a.. SQUIRT! I get it! Stop saying that, GOD! Who says squirt? Nobody says that! AUUGH!

She looks stricken, and the drive through voice is silent. Then, do you want nuts with that?

We are on our way home, and I watch her eating her ice cream, this person who has had very, very few breaks in life, and the ice cream makes her happy, and it is a miracle, really, that she is here and we can go shopping together, and I missed her when she was sick, and she drives me crazy, but I love her and I am so glad she is here. I yelled because I am scared my kids will drown and that is so messed up, on so many levels. Sorry.. I say, and she looks straight ahead. Your sister doesn’t yell at me.

I know, Mama. I know.

4.

Eden doesn’t like the lake much. He can’t swim and he has red hair so I have to put number 300 sunscreen all over him twice and Jude knocks him down whenever he tries to play with the sand toys. So we all head down to the beach and he stays with Grandma.

I linger behind at the door a moment and hear them singing a made up song about playdoh. It is to the tune of a Dolly Parton song. I sit down on the steps and listen to my mother being happy, and I am glad we came.

5.

I bought this giant smiley face ball at Wal-Mart. It is bigger than Jude and the kids are excited about it. Jude is all anal about it, though, and no one can touch it, and he is screaming, and Sage and Eden are mad, and I restrain Jude so he can’t grab it again,

and the ball floats off in the lake, way, far away, with a big stupid smile, and I yell for Sage to get it, and he just stands there. I am so mad, at myself, Jude, and I yell at Sage to quit crying, for God’s sake, and we all go inside.

We are sitting there drinking cokes, and we hear this weird scratching at the door. I tell Sage to see what it is. I hear him say, no! No! and I stand up and see three big Labradors, big WET Labradors coming in the door, big smiles on their faces, hey guys, we’re here, where’s the beer? And we are all screaming, Jude is naked because he had removed his bathing suit in a fit of rage over the stupid Wal-Mart ball, and the dogs are running all over and climbing and we are screaming and laughing and I stand on the couch yelling, BUMPASSES!!! And Don comes out of the bathroom and hauls all the dogs out.

That, says Sage, was AWESOME.

That night we are all doing the not sleeping thing again. Jude keeps going to the window and saying, NO DOGGIES. I am feeling postal, very postal, and I tell Sage to get in the car, and we go driving, all through the back roads and all over the lake property where we are staying, and we see animals, deer and skunks and rabbits and Sage says, sometimes I get mad at Jude.

Me too, I say.

I’m think it is worth it though, he says.

I don’t ask what. Me too, I say.

The last night of vacation we get ice cream Don orders a sundae with just a SQUIRT of chocolate and grins at me.

No one says squirt, Don, says my mother from the back seat.

We go over to the playground, and the boys run and play, except for Sage, who is almost too old for a playground, and I sit with my mother on the bench. She says she thinks my Dad would have liked to be here and watch them play, and I say, yeah, I think so too. It has been a good vacation, she says, and she is right, it has.

It is getting dark, and the mosquitoes are out, and I can hear a train in the distance, blowing its whistle. It is almost time to go, it says. Almost over. I look at Sage sitting on the swing. Yes, it has been fun, and crazy, and worth it. And it is almost over, almost time to go.

Soft Underbelly

Who beeps at the short bus? What kind of human being can't wait for someone to load their OBVIOUSLY disabled child onto the bus? Grrr.
The same people who tell me my writhing son needs a spanking. Actually, I get less of that then some of my friends who tell me horror stories of people saying vile, cruel things to them about their frightened, crying autistic kids. Being big and often bald and always tattooed seems to be a deterrent to that sort of thing.

Don takes Jude out to public places. I don't. Why? Because all it takes is one scornful look from a passerby and I go all Large Marge on some old woman and open the whole family up to a lawsuit.
I mean it. I just can't handle that kind of thing.

Don, however, is like this traveling amabassador for the developmentally disabled. If people stare or say stuff, he explains. He starts conversations, tells people proudly how his awesome kid learned to talk and why he shouts HAM and how much joy he brings us.

He is my hero.

Jesus says he wants us to be like little children, with unjaded hearts that never assume the worst. I remember when I was a child, and I had these little hermit crabs for pets. They would change their shells, switch around at night when I wasn't looking. One morning the biggest one was out of his shell, naked. He had outgrown every shell, and there he was, all soft and slimy for all the world to see. The image haunted me for years.

My friend's kids were throwing a ball, a little yellow ball, back and forth in the hallway. The older of the two, Joshua, is Jude's age, but they have never played together, not once, because playing with kids involves rules and nuances that might as well be a lecture on theroectical inorganic chemistry. Jude simply cannot make sense of it. Yet.

So Jude grabs the ball and takes off running. Joshua is a nice kid, he and I play sometimes, games Jude can't, like catch, and he knows I will get his ball back. I see his resignation. I drag Jude out from under the hallway bench, and pry the ball from his hands. I give it back to Joshua. I grab him, and I say, you can't grab, Jude, that was Joshua's ball. Jude is writhing and yelling. Ibring him onto my room and he clears the table, sending dishes and some papers crashing to the floor.
I hold him tight, and I say in his ear, You wanted to play with Joshua, right? You want to but you don't know how. Now you are sad.

His face crumples, along with my heart, and he stands there, rubbing his eyes and crying, wet choking sobs.

God.

It was easier when he didn't care, was in his own little world. He tries to join us here in ours and he realizes, dammit, that he is a puzzle piece that just does not fit. I hold him and rock him for awhile, and he wants to watch Calliou, the episode with the deaf kid, Robbie, who grabs Caillou's shovel and runs away.

I head down to my nieghbor, who is in the hallway with her kids. I am embarrased and worried she is sick of the grabbing and yelling, who wouldn't be. I am also inexplicably mad at poor Joshua, for I don't know, being normal, and I take a deep breath, and say, I 'm sorry, I think Jude wanted to play.

She smiles, and says, I think Joshua wants to play with Jude, too.

Really? I say. This throws me.

Yeah, I see him go down there and try to get Jude's attention.

I just look at her.

Maybe Joshua could come out to therapy, with Jude sometime? We could work on taking turns or whatever?

That'd be fun! she says, and head down the hallway after her toddler, unaware that she has rocked my world, in the best way possible.

I duck into the hallway kitchen and cry.

When I get back to my room Jude is on the couch, and I sit by him. He looks in my eyes, and says, It's okay, now, Mama.

Yes, I say.

It's gonna be okay.

Jude Meets World

We went to the pool yesterday. The YMCA, in fact. They have a swim night for families with disabled kids, which includes us, and so we went. The whole way there we listened to Jude yelling wanna go to the pool? Can we go to the pool? Can we swim with dolphins?

When we said there were no dolphins he screamed. Okay, fine, dolphins. We get there and it is so, so fun. All three boys are having a blast and we know like half the families in the pool from Jude's school, and we are having family time, all together. Priceless.

Then it is time to go home. Jude has to be drug out of the pool screaming. Screaming, Screaming, Screaming. All through getting dressed, all the way home. Goes to bed screaming. Fun time is over. He just can't deal.

He woke up this morning, and asked for the pool. No pool, Jude.
Screaming. Throwing stuff. I have to sit near him and wait while he sorts it out. Talk to him. I know you're angry. I know, you wanted the pool. It's okay. You will be okay. You can calm down, Jude. You are angry, and sad, but you can calm yourself down.

This is the sort of thing that makes me want to hide with Jude, never come out. The image of Boo
Radley, hidden in the basement, haunts me. I feel like a failure. I feel sorry for my other two sons. We can never do anything as a family, I think. Why bother.

You know what? Next time we go to the pool there will be less screaming. And less the next time,
too. And we will go. Because I am brave, and I am strong, and my son will not be hidden away,
and he will learn, and he will grow, and we are a family, and God walks with us, through the valley of the shadow of death, and to the YMCA, and the grocery store, and the park. Jude is going to figure this out, and if his learning process is a little loud, well, the world will just have to adjust to him. Just a little. Get out your earplugs people, here we come.

Signs and Wonders

I am bathing Eden, trying not to look at his swollen knee. I can hear Jude shrieking down the hallway, hear the frustration in Don's voice as he tries to calm him down. Sage comes in, wanting to tell me something, and I snap at him because I am really, truly on overload. I bury my face in a towel, and beg God. Please, a sign, a spark of hope. Show me everything will be alright.

I look around. No burning bushes, no shafts of light. Oh well.

Bertie the Bus got left outside, that is the source of Jude's shrieking. I hand Eden off to Don with instructions to towel dry and head downstairs to the yard. I get outside and poor Bertie is sitting, all alone, on the bench, looking forlorn. Forgotten.

God, I am losing it.

I go inside, and Neil, my pastor stops me. Hey, he says, I have something to show you. Let me get this book. I stand there while he searches for it, thinking that Jude is screaming upstairs.

He gets out a book called, "Holy Listening."
He opens it to a highlighted page.

This is what I read:

"When a formerly autistic child was asked what parents were for, she replied, 'They hope for you.'"

I stand without speaking, and then begin to sob. Neil is used to this sort of display from me, he has known me a long time. I hug him and head upstairs.

Jude is sitting quietly on Don's lap, and Eden is next to them, wrapped in a towel with serious retro '80's hair, and they are watching Winnie the Pooh. Sage is sitting on the floor reading, and I look at them, and I think I am surrounded by signs and wonder and gifts and mercies, and I forget, only counting the bad things, listing them, forgetting the miracles that are right in front of me each and every day.

American Gladiator

There is no lounging around in pajamas. I have to get up, get the coffee going, and jump in and start calling doctors and therapists and fill out paper work and write a social story and make sure we have enough medicine to make it over the holiday weekend.

Silly me, I was thinking we could go to the park or something.

This is not how I pictured motherhood. The whole swimming upstream thing gets old. I get tired, so tired, of being resourceful and networking and planning, planning, so we could get through the day with a minimum of screaming and bleeding and flapping and bruising.

The biggest battle, though, what makes me a true American Gladiator, is self pity. It chases me, hounds me, sneaks up beside me and taps me on the shoulder. It is a snake in my sleeping bag, a tiger in the trees, a hungry lion looking to devour me. A pushy salesman trying to get a foot in the door. I musn't hesitate, I have to say no.

The trouble is, most of my friends are not going to tell me to knock it off. I can trump their hard luck stories everytime. So I have to be my own security guard, or in about 20 minutes I turn into a combination of Veruca Salt and the creature from the black lagoon.

I used to force myself to read articles about Africa, Haiti, Beslan. I would read stories on the Bleeding Disorders website about kids who would love to have the freedom and ease of movement that mine do. It is true that most of the world does not have the access to medicine and therapies that we are blessed with. I remind myself that it is an American perspective to feel I have a right to healthy kids, a vacation and car that never breaks down. But then my neighbors take off on a sponatenous weekend trip to the water park and poof! I am starting to turn all slimy and whiny again.

When Job found out that his children had been killed, he fell to the ground and praised God. Acknowledged that He was in charge, and ultmately it all belonged to Him.

Now, I realize I have a ways to go before I can compare myself to Job, but I think that could be my starting place. God is good. He is in charge. He created me, my husband, my boys, and He loves us. That is the beginning of putting things in order, and making sense of what feels like suffering.

Perspective, sanity, order. Eyes to see. The best weapons a girl could have. So maybe I can relax, just a little. Have some coffee, and ignore the doorbell no matter how many times that pushy salesman rings. Go away. We are just not buying today.

Bleeding

So, if your son gets cut, will he just keep bleeding? Like, until he dies?

No. I get asked that, all the time.

Cuts stop eventually. It is the bleeding you can't see that does the damage.

Eden has had a bleed in his ankle, in the spaces between his joint. Not a big bleed, but a tiny leak that gives him a little limp when he walks. A grimace when he jumps. He runs, though, undeterred.
That's my boy.

More than anyone I know that physical beauty and perfect health are not what makes life fulfilling, but looking at my golden boy running in the sun makes me happy, and it is hard to think of his joints being wrecked and ruined by a slow insidious leak. So off to the hospital we go.

He looks good, says the ER doc. I hate to stick him, but if the hematologist says we gotta treat..
he shrugs. He looks good to me, too, but for all my boldness and knowledge I am afraid not to believe the blood doctor who says we have to treat or Eden may not be able to run again, ever.

It is the small internal wounds that sneak up on us, and cause us damage. We thought we could keep running, that we could ignore the nagging pain, but it eats away. We need blood to heal us, to make us whole. I look at my sons, and this is my legacy to them. I have always known I was incomplete, needing someone else's blood and life to make me whole. It hurts like hell to watch my children as this realization hits them, but there it is. The truth is everyone around us is just as broken. Perhaps we are fortunate that we have no illusions. Sorry, babies, no illusions for us, but there is love, and healing, and peace. Some kisses and ice cream, too. That is what your mama has to offer, and all I have is this little mustard seed to tell me it's enough.

Normal (whatever that means)

Are all kids weird, or just mine? Of course Jude is weird, he's autistic, he flaps and sings and only eats beige foods, but the other two aren't, they are "normal," whatever that means, but they are eccentric. Strange. Odd.

Take tonight at dinner. Jude is circling the table while reciting a Caillou episode about vegetables and Eden is yelling that his tater tot is a Pokemon and Sage leans in close so I can hear him and says, conspiratorially, "What if I had an army of chickens?"

Now, Don and I are somewhat non conformist, but we aren't that quirky, at least I never thought we were, but our kids seem to live in this nether world of imagination and surreal humor. I am not sure if I have fostered this or if it is genetic.

Sometimes the strangeness is an obvious bid for attention. When we were putting Jude to bed last night I made it clear to Sage he was not to interrupt us for a whole ten minutes. It is a complicated and delicate process, Jude's bedtime routine, and one wrong move can send us back to the beginning. Sage feels left out, even though he gets an hour of undivided attention as soon as we can leave Jude to sing along with Petula Clark at the top of his lungs and sift through his collection of unopened band-aids.

So there we were, sitting on Jude's bed, and Don is praying for Jude to have a good night, begging God really because we are so tired, and I open my eyes just in time to see Sage leaping past the open door, like a gazelle, with Eden's potty chair on his head. Just once. I wondered if I had imagined it. When we came out of Jude's room we didn't speak of it, it was a moment in time, and we moved on.

here are some other examples:
Jude used to yell HAM whenever he saw something he liked. We don't know why.
Eden goes to my mother's house, heads to her fridge, and gets out the Brunchweiger, and eats it by the handful. She lets him. What kid likes Brunchweiger, for God's sake?
Sage used to collect dustballs and pretend they were his pets. He had a little zoo. He was going to charge admission.


I admit, much of this is within the realm of normal, and perhaps our appreciation for the eccentric and bizarre has helped us appreciate Jude, who seems like a visitor from a far away land. I love my little weirdos, I do.

Maybe it's a recessive gene, like red hair. In that case, my grandkids may have a shot at normal.
Whatever that is.

Tuesday

Please pray for Jude, I write, crying in my pajamas. Don has carried him kicking and wailing out to the bus. I am emailing everyone I know, please pray, I don't know why he is screaming, he has been screaming for days, we don't know what is wrong, he must be working something out but I can't help him, oh please, pray.

My friend writes me back. He is working something out, Rebecca. He has to sort things out.
Maybe he is thinking about God.

I put my head on my keyboard and sob.


It is healing to count ladybugs and chase squirrels. Eden's hair is like fire as he runs in the sunlight, and I turn my face up to the sky and feel thankful that I get one more chance to send someone out into the world who knows someone loves him best of all. Maybe in heaven we will all be running and chasing squirrels and sitting down to read stories about friendly turtles and kindly owls. Life is so sweet when it is simple and everything makes sense.


I am walking to the store in the rain, it smells good, and I don't mind getting wet. I pass a lady with a baby in the stroller and she looks so content. I think she is happy because she believes that her child will never cry and not be comforted. Maybe he won't.


I can't believe you are nine, I tell Sage as he makes that loud slurpy sound with his drink, clearly annoying the lady behind us at Starbucks. I give her my sweetest smile.

I take his hand and hold it. Today he does not mind, but once or twice he had pulled away, independence surfacing and going back down, giving me time to prepare.

I have to get kisses and snuggles now, I whisper. I have to get my fill so I can deal when you are too cool.

Myabe, he says, leaning in closer, I can be your secret Mama's boy. No one will know.

that would be great.. I say, my eyes stinging.

My husband wants to hold me when everyone is in bed but I have nothing left, nothing to give, all I want to do is curl up with my book, but it is not just my pain today and I can't shut him out,
I can feel him breathing on my neck and he tells me I am a good mother, and I shake my head no, and he squeezed tighter and we fall asleep that way. I wake up shivering later, the window is open and he has rolled over to sleep on his own side. I get up to shut the window and look out into the windy street and I can feel God, I think, and see Him, moving the trees, and I wish I had more faith, and could I have some grace, please, just a little more because I need it to be okay.
God, please, let it be okay.

Ecstatic Gift of Love

The Word became flesh to communicate to us human beings caught in the mud, the pain, the fears and the brokenness of existence, the life, the joy, the communion, the ecstatic gift of love that is the source of all love and life and unity in our universe and that is the very life of God.
-Jean Vanier

Songs

There was a specific feeling to my father being dead, a sense of him being gone from this earth. It was hot when he died; July in Alabama, steaming hot, and when I returned to Chicago the inner city baked and shimmered the way the fields had. The lake, billowing and bucking as I walked on the pier reminded me that he was not there and would never be again. Silence reminded me that he was gone forever.

It was not until I had my children that I could remember and bear to listen to the songs that made me think of him, songs he woke me up in the middle of the night to sing and learn, and get the words right, dammit. Six years old at one in the morning. Sit up straight. Come on, you KNOW this. Roddy McCorley, Finnegan’s Wake.

He would make us sing different parts of the song, harmonies. He loved Over the Rainbow. My part was always, “where troubles melt like lemon drops…. “ Once he suggested grandly that we should take our act on the road, kidding of course, but I was too young to know that.

“Do we have to use our real names?” I asked. My father sat down at the table and laughed until he gasped for air, and our mother sent us up to bed.

My father loved jazz, Irish folk, classical music. He HATED John Denver with a passion, which was a problem on long drives to Gulf Shores in the summer. The opening notes of “Rocky Mountain High” could set off a tirade that would last from Birmingham to Baldwin County. We would wait until he was out of town on business to get out our 45 of “Thank God I’m a Country Boy.”

Sometimes my father would get us up to march around the living room with brooms to bagpipe music. More than once our house was jumping at eleven p.m. with several sodden but distinguished local attorneys, two young girls in pajamas and a frantic barking dachshund, circling the living room to “My Bonnie.”

I wonder how my mother stood it.

Those were the happy, funny times I remember, and I do remember them, before my father’s drunkenness turned sloppy and passive instead of engaging and jovial. Before the divorce. Before we lost our house, and my sister left for college and my mother and I wound up in a cheap apartment near a strip mall. Before I left for Chicago swearing I would never come back, ever.

I did return to visit, years later, after my father completed a treatment program. I was trying to get used to my new, sober dad, who was actually still quite funny and entertaining, although somewhat subdued. He picked me up from the airport and we drove to his house, and after I dropped my duffle bag and sat down he handed me a diet Coke and asked me if he could play me a song on his stereo.

He played me a duet, called “Perhaps Love,” by John Denver and Placido Domingo.

I stared in amazement as he wiped tears from his eyes.

I wondered if they had lobotomized him at the center without our permission.

Now it makes me smile to think of him finding beauty where he wouldn't have looked before, and wanting me to see it too.

I sing all those songs to my sons, the ones he loved. As I gave birth to my son Eden, “Over the Rainbow” by Brother Iz played in the background, on repeat, over and over as I pushed. The opening notes he sings, are, I am convinced, the exact sound of a parent looking at a child and wishing it could last forever, innocence and childhood and perfect uncomplicated love.

When my son came out we named him Eden. Eden for perfect, uncomplicated love, that doesn’t last, but you sure never forget it.

Eden. Eden McCorley Hill. And as long as I live, it is true. I will never, ever forget.

Revenge of the Helmet

I want an easy button, like in the commercial. Where’s my easy button?

I feel like I do pretty well. Sometimes I get down, but mostly I am cheerful, and grateful, and I have a good sense of humor. We are a happy band of mutants, us Hills. We are doing alright.

Friday some doctors told me my son, who has a bleeding disorder, and has to be oh so careful, and can’t skateboard, and can’t ice skate, and can’t wrestle with his friends, now he has a condition that makes it dangerous for him to be exposed to cold temperatures. He could quit breathing. He needs an eppy pen with him. He can’t go swimming in cold water.

Great.

When I say he can’t do these things, like skateboarding, I guess he could, but is it worth it, you know? Falling once means the hospital and meds and pain. So he reads instead.

Which is okay. Reading is good. A person wants options, though. Opportunities others take for granted.

Sage always had to wear this big helmet to protect his head, and he hated it. This year we let him quit wearing it, because he is older, and calmer. He has enjoyed the normalcy of running on the playground with his friends.

Last night, after a day of doctors telling us yet more ways he could die from normal activities, speaking casually as if they were talking about the weather, my son, my sweet son came in my room and snuggled close, like he did when he was little, and I asked him how he felt.

“It’s the revenge of the helmet,” he sighs.

I laid there with my son and told God silently that I really didn’t appreciate this. I wish I got some sort of credit for being cheerful during all the crap we put up with and that I could get a break, just once.

And I look around the room, and there is my husband who loves us and never, ever complains, and we are safe and warm and fed and loved and those are breaks, I forget but they are, and I’m sorry, God. And we have something in common, right? We both love those who must walk through pain, and stand back and let them deal, and hope they remember we love them. Only you see the big picture, what’s up around the bend, and what matters, and I am railing and pouting again.

I wonder if God wants to fix it, but knows better, like when Jude is struggling to put his socks on. Real love watches and waits, and loves and believes. It makes me feel better to help, but it doesn’t do Jude much good.

So I guess we’ll hang in there a little longer, and watch and wait and love and believe, and try to recognize those breaks when they come along, and I know in my heart there are more than we ever knew, blessings as far as the eye can see. Forget the easy button, the mutant family is doing just fine. We might just be okay after all.

Winter

Sometimes we head out to the yard, Jude and I, just the two of us on a cold gray depressing January day. Jude is dressed like that kid in A Christmas Story who can't put his arms down. I am armed with a giant bubble wand thing we got for Christmas and my travel cup full of hot coffee and we are good to go. The snow is crunchy and hard and we go scrunching around on it until that bores us and we look around for squirrels. They are smarter than we are, apparently. No squirrels.

Jude climbs the playground equipment and stands on the top, yelling for me to catch him from six feet up. This is bad enough in the summer but now big snow boots are hurtling towards my face at an alarming speed. I catch him and somehow manage to stay standing. Who says women aren't strong?

"Want bubbles? Want big one?" "I want bubbles," I remind Jude, "you want bubbles,” he repeats, no, I say, and we both laugh. I know he knows and he knows I know he knows, what? how to speak in first person. He is supposed to, but who cares, we just want to play, and so we do, I start blowing these giant monster bubbles that seem so out of place on this barren day. They float up past the warm happy windows of my friends and family who are stacked high watching sports and relaxing. I remember slow Sunday afternoons and being bored. I think. That's okay. I don't miss it much. A big, colored bubble sails slowly past Jude's head.

Are you a good witch, or a bad witch? I ask him. No response.

I bend over to refill the bubble thing and whap! I am stung by a wad of snow , right on my forehead, it hurts tremendously and I look up and Jude has this impish look on his face and he runs away laughing, my son hit me with a snowball, well isn't that normal and I am pleased.
Not in the face, Jude, I call, but he is off eating snow in the corner of the garden. This is something I cannot prevent so I look away to prevent having a panic attack about germs and pigeon poo.

It is cold, and depressing, and Christmas is over and my house is dirty but it is hard enough to muster the will to live let alone clean for Pete’s sake, so I drink my coffee and watch my son putter around in the snow. He could stay out for hours; I will probably end up promising him fast food to get him in. Sigh. Maybe I will have some too.

Soon it will be spring and the yard will be full of friends who seem so much nicer and interesting when there is fresh air between us, playing guitars and happy half dressed kids running around in the sprinkler. Until then we will crunch around this arctic tundra, Jude and I, sharing moments only we can know, and that is okay for now, enough for me on a frozen winter's day.

Things that bug a classy gal like me

I write this list as a means to calm myself.

Kiddo
Veggies
Blouse
Slacks
Drizzle (as in, drizzle some olive oil on your veggies)
Fresh, especially when people say, fresh fruit. and veggies.
B. M. please, for my sake, just say poop.
Pert
Classy
Crisp, crisply
Glass of wine. Of course it's in a glass. God.
Moist.
Broth.
gal
neat
girly
hunk
lady, as in "That's my lady, or "Classy lady."
tot
tweens
handicapped
Stuff
cleanse.
Beauty routine. Who has a beauty routine.? Who has an expression to describe that?

Mandy Patinkin. I realize that he is not a word, nor an expression, but he bothers me. Good Lord, he bothers me. Why is his name Mandy? I have to take deep, yes cleansing breaths when he is on television. I wish Jimmy Smits was on that FBI show instead. Jimmy Smits is neat.

Packed Fresh Daily

Mercy is the only thing you can ask for, really, in life. Unmerited favor. Grace. Beauty and sweetness in the midst of grief and pain. Every day mercy is brand new, if you believe the Bible, and I do. I really, really do.

After our son Sage was born my husband was ready to be done. We had a beautiful child, and still some freedom, and we were hanging in there. Sage came with us in the front pack wherever we went. He slept in and woke up singing. He had been healthy except for this mysterious bruise that covered his left side. I pointed it out to the pediatrician, mindful of my own clotting issues, but she didn't seem too worried so I took her referral for the hematologist and put it in my pocket. I think it went through the wash.

I wanted more children. That is all I wanted, and I was going to have them. Don wanted to pursue his music, and play gigs, and he had not forgotten the vomiting, the hospital stays, and the day Sage was born when he stood between his hemorrhaging wife and residents frantically doing CPR on his limp, blue child. He had no wish to repeat that experience.

But I wanted more children. All I ever wanted was three boys. I was going to have them. I told Don as much. I would have more children, or we would not be married.

The selfishness of it staggers me now. It literally takes my breath away.

I watch my husband play with the child I insisted we have, a beautiful boy who has changed us, torn us apart and put us together again, broken our hearts and blessed us beyond words. There are no music projects now, no dates downtown, no sleeping in. Yet the joy in my husband's face is impossible to deny.

Jude had horrible jaundice as a newborn, and a high fever. One night I sat up all night long after the power was down in our city high rise, holding him and wondering if I should take him to the hospital. Every day I look at Jude and wonder if I ruined him, and that is the truth. Every hour we spend trying to teach him to button and color and his hands won't work, every time we meet with yet another therapist, I remember that night. I know God knows I would die rather than hurt my child. I know He knows that. But late at night when I can't sleep, that matters less than it should. Sage got Von Willebrands from me and from a lurking recessive gene from Don.
It is not a mild disorder for Sage, and never will be.

Then I got pregnant with Eden. I was terrified, of autism and jaundice and bleeds and dying and leaving Jude behind. Terrified my long suffering husband would finally have had enough.

Long ago I had wished for three boys, and a red headed son to remind me of my Grandmother.
Eden was born on her birthday, with bright red hair. A special gift from my secret pal, who hadn't forgotten the desires of my twisted and broken little heart.

And Eden does bleed. But he is not autistic. And we are happy, broken and struggling but happy. Because mercy is new, brand new, every single morning. Mercy, mysterious and wonderful and completely, absolutely undeserved. My children are beautiful, and we are wonderfully blessed with joy and sweetness and pain and love.

And mercy, sweet mercy.
Brand new. Every day.

Mercy lives here, and it's free.

Come and get it.

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.