Planet Skokie

Angie suggested we take Jude swimming. Since Angie is Jude’s
occupational therapist, I assumed the address she gave me was some
sort of therapeutic center. I knew I had assumed incorrectly when I
saw the big, bright water slide rising over the treetops.
Great, I thought. Swimming and a show. See the boy scream and flap!
Be amazed at his mother’s tattoos and body hair!

Angie, who is a doll, and would never imagine that anyone would look
at Jude and not instantly fall in love, meets us at the door. She
leads us out to the pool, and introduced me to her mother and
cousins, all like Angie, perfectly tanned and coiffed and waxed and
pedicured in their bikinis. And like Angie, they are friendly and
kind, but I am uncomfortable, sweating and feeling like a zoo
exhibit. I sit on a lawn chair, and think of Beth at home, hairy legs
propped on a milk crate, watching her kids play with the hose.
I start making mental notes so I can entertain her with suburban
stories. Beth is great for that. Once we were at the park and this
yuppie lady was following her blond toddler around, calling him,
Miles Davis! Miles Davis!!

Beth and I make sideways eye contact. Louis Armstrong!! I yell to
Eden, who ignores me. Bob Marley!! She calls to Cyrus, who looks
confused. Well, Beth says, I better go check on Angela Davis. I just
saw her over by the swings, I say.

Immature, sure, but it helps us feel like maybe we aren’t getting
sucked into a soccer mom vortex. Hey, look how funny and cynical we
are! I might drive a mini van, but it is ten years old and there are
anti war stickers all over the thing. So there.

I lean over to chat with Angies mom, who I discover is the same age
as I am. And she looks better, too.

God.

Jude is in the pool with Angie, and I am watching him, going under
water, trying to float, happy as an otter, playing, splashing. I look
at Angie’s mom, and she is beaming at them, and I am not sure if she
is looking with pride and joy at my child or hers.

It is time to get out of the pool. Jude cannot handle it, and the
meltdown ensues. He is screaming like the proverbial banshee. I sit
by him. Angie does, too. If I could haul him to the car I would, but
there is no picking him up. Angie says, hey, this is fine. He’s sad.
He will get it together, and all we can do is be with him so he isn’t
all alone.

It’s just, a scene, I say.

So? Angie says. She is still looking at Jude, just the way she always
does. Like he hung the moon.

I will myself not to look around at all the faces, which I am sure
are gaping at us in horror and disapproval. Yeah, yeah, this is what
happens when freaks give birth. Go back to your Maeve Binchey novel,
you Stepford wives.

Excuse me, someone says, and I look up. Would he like a cookie?
Stepford wife is smiling, and sits down by Jude, and starts feeding
him milanos. He pauses, chews, and continues to scream. You are doing
a wonderful job, she says to me.

Someone behind me speaks. “He has such beautiful eyes.” I look up,
and everyone is looking at us. And smiling. All over the pool.
Someone pats my back.

Now I am blinking back tears.

Jude calms down, and we buy him a pop and get him in the car. I hug
Angie and tell her I have decided the burbs are not so bad.
And I hit the highway towards the city, with big, hot coals on my
head, and a Miles Davis song playing in my heart.=

Mermaids

It is beach day, and Jamie is coming with her kids. It is a special
day because John and Jamie, our friends have moved back to
Chicago from Fresno. I have missed them both with a hollow ache for
seven years. Now they are here, living in the city, and we can be
together as much as we want.

All three of my kids and Jamie’s two are yelling with excitement,
taking over the 151 as it winds down Sheridan to a little beach on
Chicago’s lakefront. Jamie and I smile at each other. It has been so
long.

Memories float back to me, of John and I laughing our heads off at
pictures of Don in 80’s spandex, Jamie and I being pregnant together,
our babies born two weeks apart.

Jamie standing in my doorway, afraid to bring in her baby because
mine was in the NICU.

Long walks down by the lake, babies in strollers, Johannes fussing
and Sage big and placid.

They moved soon after, and Lord how I cried, big and hormonal with my
second child.
Now they are back.

Johannes, like Jude, is on the autistic spectrum. He recites facts
about jazz and the civil rights movement. I think he is wonderful.
Jamie is worried he’ll yell out something inappropriate. I am worried
Jude will take his pants off. Jamie and I laugh, because we have more
in common than we ever did.

Jamie is good for a person’s ego. She listens to every story with
rapt attention, thinks I am hilarious, and has the best laugh in the
world. She is the sort of person who will watch your gory birth tape
ten times and never laugh when you hit the doctor and beg him for
Demerol.

Karin and Eden share a seat, talking and giggling. Eden is almost
four and Karin is almost six. They are about the same size, though,
Karin has Cystic Fibrosis.

I asked Jamie how she can stand it, the fear that Karin will catch
some bug, how she can let her out of the house, not just sit and rock
her and never let her go.

Jamie laughs; pointing out she could ask the same of me.

Hemophilia is different, I say. Is it? Maybe I’m just used to it.
We sit in silence, my friend and I. You don’t get used to it. You beg
God for mercy with every ounce of your being, take a deep cleansing
breath, and then you get on the bus.


The beach is wonderful, the kids are so happy, and Jamie I talk and
talk and talk. Our lives are so similiar, kids on the spectrum, kids
with genetic, well, stuff. I am acutely aware of the difference,
however. Sage and Eden have a normal life expectancy.

Jamie muses that when Eden and Karin are older, they will relate to
each other because of all the medical crap they have endured. I can’t
decide if this is a good thing, or really super depressing.

Karin asks me to take her in the water, so she won’t be scared. She
and I play mermaid, she rides on my back while I slide through the
water. She asks me after awhile, “are you tiwerd, mermaid?” No way, I
tell her, mermaids never get tired. We find a handsome prince named
Jude and ask him for a kiss, and remind him to pull up his swim trunks.

Later Karin comes running up, she has caught an insect. I open her
hand to find a hornet, and knock it away. Did it sting you? I ask.
Nope! She says, and runs off to play. I smash the hornet with my
sandal, and watch her as she skips down the beach.

When John came out to find apartments, we went out to eat, he and Don
and I. I kept having to excuse myself to go cry in the ladies’ room.
I couldn’t sit and talk about Don in pink spandex and the time John
filled Don’s combat boots with shaving cream. I could see ER’s and
needles and suffering in John’s eyes, and I couldn’t stand it.
Something changes in your soul when your child cries and just cannot
be comforted.

We are worn out and sandy and even Jude is willing to leave. Karin holds
my hand as we walk up the beach, and Sage says behind me, I knew it,
you always wanted a girl. This makes Karin and me laugh.

We are quiet on the way home, tired and lost in thought, and I am
thinking that dreams come true and then they don’t, and some things
you love go away, and drift back to you again, if you just try to be
brave and wait patiently, and dry your tears and get busy with what
you have to do. I am thinking, I wish I were a mermaid. I would carry
everyone on the water, and I would never, ever get tired.

Are You There God? It's Me, Becca

Jude loves it when we figure out what he is saying or thinking about. He does a little dance, then holds his hands to his sides and stays very still for a second, as is to savor the joy of being known, just for a moment.

He has a new game. He closes his eyes, and reaches for me, and touches my face, like a blind person trying to feel the features of the one he loves.

"You want to know I am still here, even when you can't see me, that Mama never disappears, right?"

He does the dance, and the arm thing, and then collapses into my arms and stays there. Separation anxiety has ruled both our lives, we hate to be apart, especially for bedtime. I sit by his door while he screams for me, telling myself its for the best, he needs to do this. He has a picture of me he can look at, to remember that I do not disappear.

Sometimes it is hard for me remember. The One I Love does not disappear, He never changes, He is always there, even if I can't see or feel Him just right now.

I close my eyes, and reach out.
Are You still there? Because my mind can't hold on to the idea of you, but my heart knows what is true. And Jude falls asleep with my picture, because his heart knows I am waiting there, just outside the door.

Like Polio, Jennifer. Like Polio.

Here is the link for the Five for Fighting video. Autism Speaks gets 49 cents for every view.
Enjoy!
http://www.whatkindofworlddoyouwant.com/videos/view/id/213154

Hey! you in the overalls

We were going through videotapes of Jude's first year, something I had avoided until now because the raw hope and happy expectation would be, I worried,a bit too painful. The desire to warn the twenty something me might send me to a sad place. Wait, I would say, don't get too happy, things are about to get complicated, that baby cooing at you as you bathe him, well, sorry to be the one to tell you, but he'll stop talking. He'll only shriek and scream and you will spend all your time trying to figure out what he needs. That toddler with the big eyes, well, you just won't have time to play with him anymore. Enjoy the simple pleasures of pushing them in the double stroller all over the neighborhood, nursing your baby while your adorable two year old plays. You're so proud of them.
A little smug, even.

Angie, an occupational therapist, cheerleader and expert on all things Jude, needs these tapes for a presentation she is doing about Jude's case. Jude is fascinating, autistic, strange,
oddly social and making progress in leaps and bounds. The world needs to see this guy. It is like we found him in the rain forest. A new species.

So I watch the tapes. God we were happy. Ah, to be young and ignorant of what lurks around the corner.

What else would I tell that chick in the beat up overalls and the lip ring?

Well, the lip ring is gonna mess up your teeth, honey. And you will be shedding tears, oceans of tears, because that happy dream will come to an end and be replaced by needles and bruises and developmental experts who shake their heads and tell you they don't know much about the brain, really. You will tell them to figure it out, okay? That's why you drive a Lexus, lady, just fix it.

They will exchange that look you hate, and talk to you like you are a little nuts. You are a little nuts. You feel like tossing a chair.

You know what though, lip ring girl? You won't die. You'll keep moving, and you'll figure out that there is bright, happy light behind your little boy's eyes, that there is a whole fabulous world in there, yours to explore. And he will start to explore your world, too. He is not lost, honey, not by a long shot. Your toddler will show you how resilient he is, and the two of you will feel God's mercy, His love, His tender heart towards you, you will both know He is there and nothing can keep you from His arms. You'll start to laugh and play again.

So, full circle, sugar, seven years from now you will have another boy with hair like fire and he makes your life like a party every doggone day, and the screaming will be drowned out by laughter, tears of sorrow replaced by tears of gratitude and joy, and hon? Your mother moves in and you get to see her happy for the first time in your life.

Trust me. It will be okay. It is all working together, even the worst of it, like a big swirling kaleidoscope of love and pain and mercy and tears and laughter and you get to stand back and see it for what, and Who, it is.

So, I can watch the tapes. Lip ring girl doesn't make me so sad now. I blow her a kiss and lean back in my husband's arms.

You go girl. It's gonna be fine.
Promise.

Heaven Sent

It is a beautiful song, Joy has the voice of an angel. She is singing from the perspective of Mary.

You're my love, my joy, my heaven given boy. What a gift you are to me, Who am I , that He chose me...
I can see it, looking at a child who has turned your life upside down, taken every expectation and plowed it asunder, and you know your love for him will break your heart, again, again and again.

To look in his eyes, and know, you really do know, what a gift from God, the love, the pain, the pure sweet joy, so indescribable. So perfect.

I can see it. This midnight service, I have never been more sure that God has handed me a gift, Others pity me, they see it as a curse. It isn't their fault, they just can't see it.
I see.
Heaven given.
Perfect.

Winter Light

We went to the zoo last night, with some friends. Lincoln Park Zoo hosts the Zoo Lights, with Christmas lights and animals and Santa and stuff. We went with Joe and Tania and their kids. Joey is Jude's age, and he is autistic, too. It is nice to be with people who understand.

It was a beautiful night, warm and breezy, and there was Christmas music and the boys held hands as we walked around in the night air.

Every time we walked under the speakers Jude would dance, arms waving, and the people would step around him, and he was oblivious to them, only hearing the music. Perfect.

When we got home there was a Christmas card from a friend waiting, with one of my favorite quotes from Willa Cather:

Where there is great love, there are always miracles.

I used to say that to myself, confident in my great love for my children, which seemed so fathomless and all consuming, an entity unto itself, it could make anything happen. Move mountains. Teach my son to speak and read.

My son does speak, and he is learning to read. But tonight I am not waiting for a miracle. The miracle is here, the miracle is that I realize the miracle and the great love are one in the same. The miracle is watching my son dance in the misty lights and not wishing or wanting for one single thing.

Hallelujah. Glory to God.
Merry Christmas.

Dragon Fish

My friend Robert has a new tattoo, on his bad leg. This was one of the few ink free places left on Robert, because his left leg is mostly scar tissue from a horrible childhood accident. Robert was drug by a car when he was four, and spent months in the hospital with pain and operations and infection. The doctors wanted to amputate, but his father wouldn't let them. So Robert, a small child, suffered and struggled.

When he told me this story, I grimaced, and said, ooh, Robert, your poor mother.

That made Robert laugh. Now he shows me his tattoo of a beautiful koi fish, and he tells me the Japanese legend that if the koi fish struggles and fights his way up the river, and over the waterfall, the fish becomes a powerful, magical dragon, reward for his courage and refusal to give up in the face of difficulty. This bring tears to my eyes, and look away so Robert won't see.

My oldest son Sage loves dragons. I think they appeal to him because they are powerful and can fly above troubles, untouched. Sage is only nine, but I think he would like to fly. I think he is already tired of struggling.

From the moment he was born, Sage had to fight. He was stuck, and when the doctors got him out he was blue and lifeless. He spent the next week on a ventilator, me with my forehead pressed against the side of the incubator, wishing to hold him, watching him fight. It tore at my very being that I could not do this for him, he had to fight and learn to take breaths on his own, and I could only love him through the plastic.

His toddler years were spent enduring painful medical procedures and watching his friends do things he could not, lest he have to go to the hospital and get stuck. He wore a helmet to protect his head. None of the kids gave him a hard time about it, but he hated it just the same.

Not one for sports, my son lives for books and fantasy and stories. They were a place to escape when we, his exhausted parents spent all our time trying to help his autistic younger brother who needed so much, and his baby brother who spent so much time in the hospital for the same bleeding disorder that makes Sage feel so different than everyone else.

Sage struggles in school, struggles to make straight A's even though focusing is almost impossible for his his abstract mind, and he struggles to stay afloat in the dog eat dog world of nine year olds. Sage's heart bruises as easily as his skin, just by his very nature. I wish he could be more resilient, but then I don't, why would I want him to be harder of heart? So I don't have to feel his pain, I suppose, when a classmate rolls his eyes at Sage's dragon poem that the teacher puts on the wall.

I used to climb into Sage's bed at night, when he would wake up from nightmares after a long night at the ER, and sing Over the Rainbow, a song my father sang, and it seemed more appropriate than a cheery song about dancing vegetables or whatever. Sage would ask me to sing it again and again. I wonder if he remembers that, now.

Sage has had testing to see if his attention problems are treatable, and the therapist can't stop talking about how engaging, and smart, and sweet he is. We smile but brace ourselves. Sage does have some differences in how he processes information, she tells us. He can be helped with tutoring. Oh. He does make straight A's, I tell her, it is just that he seems so frustrated all the time.

He has, she says gently, a somewhat negative view of life. He feels different, defective almost.
He sees life as a struggle.

That is because it is a struggle, lady. I think of when I brought him home from the hospital, and sat by his crib, unable to sleep for all the joy and fear in my heart, and there was hope, so much hope, that my son would never feel alone.

It seems so silly now, that I could convince myself that somehow my son would escape the pain of living and only experience the joy.

And there has been joy. No one was ever loved as much as Sage. He makes us laugh, he is so kind that he puts us to shame, and he is compassionate and brave. He, like his mother, feels everything, loves with abandon, and his heart breaks every day. Not an easy existence, but there it is. Lousy clotting is not the only thing I have given my child. And I know he will be okay, even if he does have to swim upstream. I must live with the pain of not being able to fix it for him, of watching him make his way to where he needs to be.

When I see Robert again, I admire his tattoo, but I point out to him that the fish is headed in the wrong direction.

Robert smiles. That, he says, is because my fish is headed home.

Rather Inconvenient

Not everyone has friends with a goth band who will come in with their fog machine and help your son recreate the "Cloud Indoors" Teletubbies episode.

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.