NEW BLOG

Dear friends, I have neglected the Penelope Tree, it is true, for my book, which is due out in January from Cornerstone Press.  All very exciting. I have started a new blog, The Velveteen Hamster, which you can visit at 

www.velveteenhamster.blogspot.com. Tell your friends, and keep an eye out for St. Jude and the Penelope Tree, coming soon!

thanks for reading.

Rebecca Hill

Child of Stone

I love Discovery Health Channel. I diagnose them as they walk in the door. The attendings on Diagnosis X are still scratching their heads and I've got it. "It's Thallasemia you numbskull!" "Look at the posturing! It's tetanus! jeez!"

It freaks my husband out that I am usually right. "Hey,"" I tell him, my mouth full of popcorn. I didn't get a GED for nothin'."

After my show another program came on. It told the story of a woman who had a mass removed, and the doctors discovered that is was a baby who had died inside of her, and after many, many years the child had turned to stone.

The doctors explained how there was a layer of calcium all over the baby and that underneath was a whole child, perfectly preserved.

The woman, an old lady from Morocco, said she knew he was in there, she just thought he was sleeping, and that was fine with her.


That night I dreamed I had a stone baby, but I was not content to let him sleep. I worked on this outer layer for days, years, months, and chipped and sanded and peeled away the hard layer until one day, it cracked open, and inside was a beautiful, pink baby.




All of a sudden Jude wants me to read to him. It hurt me that I could not share words and stories with him, they meant so much to me.I would try and try and he would cover his ears, overwhelmed by the words and yell, Noooo!

The other day he asked me to read Goodnight Moon to him. I read it, blinking back tears. That night he and I lay on our backs in the yard and watched the moon. He told the moon goodnight and wanted me to, as well. When we went in he wanted "Story Time." I read him several books and he loved it, pointing things out to me, sharing the joy of it with me.

I have been told that if Jude continues like this it may be hard to tell he is autistic in a few years. Things I thought were lost, they weren't lost, just sleeping. Waiting to be awakened, to come alive. No more child of stone, staring off into the distance and screaming when forced to join the rest of us. Flesh and blood, and I knew he was there, all along.

Whole

It is hard to think of your toddler's knee being damaged. Forever. Of course, we are all dying from the moment we are born. No one’s body lasts forever. I just have trouble reconciling the idea of his bones being creaky and stiff before he finishes kindergarten.

I stay pretty positive. There are moments, however, that send me into a dark place, a place that makes me hold very still, and concentrate on my breathing. It is like I cave in on myself for a little bit, until I can remind myself of what is true.

My sons are having a good life. Early on I learned to pray, not for them to be healthy, but for them to know God. They could be handsome and smart, rich and successful, and be lost souls who can’t fathom how loved they are, in this world or the next.

I can’t fix the other stuff. That is my grief, and my pain, and my sorrow. And even if my kids were healthy, that would be my cross to bear, the realization that they will cry and struggle and love in vain, and there is not a damn thing I can do about it.

I have talked to other parents who are self aware enough to know that they grieve as much as they delight in their children. Such a sweet sorrow, as you let go and watch them struggle to stay afloat, grateful beyond measure for all the moments you could smell their hair and look in their eyes and savor, just savor. I watch strangers with their children and wonder if they cry at night like I do, from joy and grief and other inexpressible emotions.

I may not totally get past the guilt that I have passed on all sorts of genetic weirdness that my boys have to wrestle with. They are fortunate in so many ways. Handsome, smart, and loved. Not to mention well fed and cared for in a physical sense. I can tell myself that all day long, and I must pretend to agree when some well meaning acquaintance says, “Well at least they don’t have a brain tumor.”


What an ignorant thing to say. Do you go home and say; well at least my kid doesn’t have a bleeding disorder, or autism? Of course you don’t, you ninny,
Because you always took for granted that your kids would be healthy. I did, too, even in the face of evidence to the contrary.

Jesus was fond of telling people that their faith had healed them. The sickness, and the relief from it, was just not the point. The point was to realize the only way out of pain and hopelessness and despair is to believe with your whole heart and soul and mind that there is an all knowing, all powerful someone out there who wants the best for you, and knows better than you, and loves you, and loves those you love more than you ever could. If you can do that, then you will be whole. Otherwise, what is the point? Are our lives just badly maintained slot machines that never really pay off?

Reach out, I tell myself. Touch the edge of the garment. That is all I can do, to stop the sorrow, the loss, the bleeding of my soul. I can reach out to someone who knows better than me how painful it is to watch someone you love suffer. I wonder if God watched His son sleep and wished it could be different? Does He look at me and wish I could comprehend how much He loves me? Does He cry when my heart is breaking?

Sage came home after a long day at school, trying not to cry because he just couldn’t keep up in gym, and his friends yelled at him to just stay out of the way.

And I can’t fix that, or his ankle that is looking kind of puffy. But I have arms, and grapes and cold milk, and a heart that loves him, and a story about this woman, see, this woman, she just reached out, to the very edge of this garment, because she believed that there was power and love, and she was healed, inside and out.

That is all we can ask for. A safe place and a story about someone who loves us best of all.

Cherished is the Word

I have always wanted to visit L’Arche, Jean Vanier’s communities for the developmentally disabled. There is one in Cicero, not far from Chicago. A friend of mine worked there, off and on, before joining Jesus People. She was our babysitter for a time, all no nonsense and calm and practical. Sometimes I thought Carolyn was babysitting me, her nineteen years to my thirty something, coaching me as I nursed Eden and potty-trained Jude. My favorite Carolyn advice, "You can say no to him, you know."

It was an unfamiliar concept at the time.

Last week, late in the summer afternoon we all head out to the yard, the boys and Gramma and Don and myself. People are grilling and tables were set up in the garden. It looks like Carolyn is having some friends over. I sit on the bench and Jude heads over to lie on the cement and watch the water in the big drain on the basketball court.

I have my shuffle on, listening to Aretha but on low so I can hear any sounds of disagreement or distress, from or caused by my kids.

A shadow makes me look up. A nicely dressed young man, clean shaven and smelling of cologne, holds out his hand. “I’m Chris. Nice to meet you. Do you like the Price is Right? They have a big wheel, it lights up and it goes in a circle. It’s very tall, and I like things that are big and light up.”

“Hi, Chris,” I say, somewhat taken aback, instantly recognizing the tempo of his speech and his mannerisms. I look over his shoulder. Carolyn is watching us and smiling. Oh. L’Arche is here.

Chris wants to know if our building has a sprinkler system, and how do I feel about Crown Victorias; don’t I think they were the best cars ever made?

He chats with me awhile, and then starts telling my mother about Schaumburg, where his parents lived. I cannot take my eyes off him. I glance over at Jude, flapping and muttering, and back to Chris, and then back at Jude. Oh my God. I was seeing my son’s future, his Doppelganger.
Wow.

“Isn’t he great?” Carolyn says. “I wanted you to meet him. His parents are awesome, they just adore him.”

And I can see that, because Chris radiates it, that sense of self, when you meet someone you know has been cherished, has been raised well. My son has that intangible quality, as well, that brightness that says, I am the apple of someone’s eye. Someone dreams for me and hopes and believes in me.

That is what I know, when I look at Chris. He is defined, not by his neurological differences, but by the simple fact that he has been fortunate enough to be adored.

Jude comes over and points out a pigeon. I gather him up in my arms and whisper, we are so lucky, you know that? “Lucky,” Jude repeats.

Carolyn asks me if I would like to meet Chris’s parents someday.

“Yeah,” I say, still watching him. “And when you see them next? Tell them thanks.”

Carolyn smiles. “No problem.” And she heads over to sit with her friends.
“Thanks mama,” Jude says, and gives a little flap.

I look up and Chris is smiling and talking at the table.
“No problem,” I tell Jude. ‘No problem at all.”

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.

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.

Biodegradeable? Of course they are

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

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

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

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

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

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

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

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

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

Places to go, someone to see

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

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

God speed, little man. See you soon.

Push

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

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

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

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

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

Sit down, shut up, and make some Kool Aid

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

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

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

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

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

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

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

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

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

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

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

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

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

Stop It Rosie

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

To date, I am still waiting for a response.

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

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

Most of all, Jude spoke Caillou.

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

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

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

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

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

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

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

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

Perfect.

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

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

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

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

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

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

Except for Barney. Oh my God, Barney.

Please. Don’t get me started.

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

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

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

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

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

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

God Save the Queen

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

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

So you can see how important this was.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But it’s loud.

Go tell Daddy.

I did.

Well, he’ll stop.

When?

Shhh

I need a snack?

Where is Daddy?

I don’t know’…

Find him!!
I can’t

Don comes in.

Sage needs his snack.

Can you get it?

What is there?

Look in the fridge!

Did you get milk?

Hush!

Sage:

Can I get my hamster out?

No!

Why not?

Because?

Why?

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

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

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

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

It’s not funny. I say, don’t laugh.

He’s laughing.

What did you do with it? He asks.

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

What!? He asks incredulously. You did?

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

Guffaw.

What did she do?

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

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

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

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

I hope he remembers I loved him.

Father's Day

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

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

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

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

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

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

So Many Wishes

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

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

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

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

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

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

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

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

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

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

Yeah, I say. So many wishes.

What It's Like

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

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

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

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

Pennies

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

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

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

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

We are all wishing, and longing. Waiting.

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

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

Whee

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

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

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

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

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

Ghosts

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

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

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

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

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

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

Save Me

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

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

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

Help me to say thank you.

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

Love Train

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

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

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

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

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

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

Grown Ups

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

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

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

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

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

Not Even Close

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas.

Too Wonderful

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

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

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

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

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

But wait...

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

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

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

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

Because I liked men too much.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cake

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

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

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

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

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

A Nice Place to Visit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Penelope Tree

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here We Go

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

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

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

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

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

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

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

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

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

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