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.
Thursday, September 27, 2007
Friday, September 14, 2007
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.
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.”
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.”
Monday, July 09, 2007
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.=
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.
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.
Wednesday, April 25, 2007
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.
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
Enjoy!
http://www.whatkindofworlddoyouwant.com/videos/view/id/213154
Monday, April 16, 2007
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.
Subscribe to:
Posts (Atom)