Bar Fly

Every hour the doormen switch from the back gate to the front door. The majority of patrons come in through the front entrance on Shattuck while the waiters, runners, and bartenders go for their cigarette breaks out towards the back alley of Allston. While the Jupiters employees neurotically inhale coffin nails, I play solatiare on my Ipod. I shuffle through most of the deals, only accepting a quarter. An ace or two with an even mix of black and red cards must show up before I start; if you're gonna play with yourself you better have a good hand.

At 1:30 Matt, or one of the other black shirted bartenders, will emerge from the bar, step out to the patio, and shout, "Last call for alcohol!" The other doorman and I lock the gates, close the windows, and pick up random pint glasses. By quarter of two, most of the patrons have left. Those that haven't get a second warning, "You don't have to go home, but you can't stay here."

My twin brother closes the bar down a couple nights a week, and Monday night, after I'd turned off the patio lights, he poured me a Racer 5 while he finished stacking the glasses.

"I'll be graduating in the spring Matt, with an Economics and Business Management degree. After that, I'm gonna have to get a job, a house, a car. I'll be slaving away to repay my student loans, my medical bills, and a fucking mortgage. I'll gain twenty pounds and won't ever climb again."

"No complaining at the bar," Matt started wiping down the wood counter.

"That old man sobbed earlier."

"The guy at the end of the bar? Phil, the human walrus? He's been coming here for years. You could wring a pint of Red Spot out of his mustache." The upstairs lights were shut off and the bar darkened. "I wasn't listening to him. He was ordering a beer and got teary cause the keg of Red Spot was dry. Besides, I'd cut my shoulder off before I'd let him cry on it."

"Oh. But what am I gonna do? I suck as a climber, and there's no way I could write for a living."

Matt snatched my glass, tilting his swollen nose down at me. Two days prior he'd been in a Muay Thai fight. Though he'd fought well, he'd received a TKO; he'd been bleeding profusely from a small cut on his nose. It was a bad decision by the referee. "Life's a disappointment," He placed two beers on the bar and drank with me. "And in the morning it's a hangover. Let's go see if the Pasand Lounge is still open.

Fortunately, the other bar hadn't closed yet. The bar stool swayed uncontrollably as I climbed on to it. There was a small karaoke stage and a pale thirty year old relived his glory days in the corner, singing the Cure. A head fell onto my shoulder, and an arm caressed my bicep.

"Looks like someone likes you James," Matt smiled. The Asian girl next to me was barely on her stool.

"Hey?" my mind shuffled through a series of bad pickup lines. "If I told you you had a beautiful body, would you hold it against me?"

Matt's eyes rolled as the girl grabbed my arm tighter to keep from falling off the barstool. The bartender stared at her.

"I think you've had enough," he took her beer from her and placed it behind the bar.

Suddenly, there was serious Asian fury. "You, you can't take that!" The drunk girl grabbed an empty pint glass and threw it with Nolan Ryan speed at the mirror behind the bar. Glass sprayed across the room. The girl swiped her hand on the counter top, knocking a few more glasses over.

"Get the fuck out of my bar!" The bartender stared at the shards of glass strewn through the room. A bouncer ran up, grabbed the girl, and dragged her to the street. as the bartender picked up glass.

Matt plucked a piece of shrapnel from his beer, and downed the rest. "You couldn't afford a condom anyway. Let's go, there's a couple of pale ales back at the house." He tossed an extra bill to the bartender. "Be thankful this shit doesn't happy at Jupiters."

I stumbled behind, happy that, at least for a moment, life was exciting.

First Published with graphic in the Lattice Journal Novemeber 2007,

Making Monsters For My Friends

Es el titulo de un temazo de los Ramones, y me pareció apropiado nombrar esta entrada así.
Si porque habría un editor interesado en recopilar unas historietas de terror que hicimos hace poco mas de 10 años con Claudio Ramirez, Jorge Lucas y Fernando Calvi, entonces estoy retocando algunas de las paginas mas flojas.
Estos son algunos "bocetos del work in progress".

Blackzan ya volverá.

That too?!?

Yes, that too. I was explaining to a tacky acquaintance once about Lucas's heart condition, and she responded, "he has that wrong with him too?" She meant no real harm, but her words hurt me and I have not forgotten that conversation.

When Lucas was in the NICU after birth, the doctors detected a heart murmur. They did a heart echo and discovered that Lucas has a bicuspid aortic valve, which results in aortic insufficiency (AI). The aortic valve is supposed to have 3 leaves, but Lucas's valve has 2 fused together, making it bicuspid instead of tricuspid. Because the valve cannot fully close, it allows some blood to flow in the reverse direction, causing the detectable murmur. Lucas also has a small Patent Foramen Ovale (PFO), a small hole between the ventricles, which is common in babies (and actually all fetuses have), but it's supposed to close at birth, or shortly thereafter. Lucas's has not closed yet, but is very small. The cardiologist says it's not a problem as long as blood continues to flow from the left to the right ventricle. Yesterday, we were told that the left ventricle is slightly larger (1 mm) than average, so they will continue to watch that.

The cardiologist continues to stress that Lucas's heart condition is MILD. Every time we go, they always ask us if he ever turns blue (!!??!!) or sweats excessively. No, none of the above. At this point, they just want to monitor him every 6 months. The doctor always tells us to continue to treat him like a normal child, with no limitations. But, it is not recommended that he play football, wrestle or do power lifting when he's older. Oh shucks (please sense the sarcasm). In the future, he MAY require medication, and eventually (a few decades?) he MAY need to have his valve replaced, but he also may not. WE'RE NO WHERE NEAR THAT POINT. Nate's maternal grandfather had the same condition, didn't know about it until he was in his 60s, and lived into his 80s, so that gives us hope. But sitting in the cardiologist's office yesterday, with his CI processor on, I know people were thinking, "that too?" Yeah, that too. It hurts me very badly to think about it. I often want to cry when I meet new kids who are perfectly healthy. Even though I know it's ridiculous, I continue to wonder what I did wrong.

Hearing loss is not life threatening, but rather "lifestyle" threatening. The heart is a different story. But his hearing loss is a much bigger deal right now. It threatens communication, which is at the very center of human existence. We visit the audiologist at the "Center for Childhood Communication," not the "Center for Childhood Hearing." Our goal is to provide him with multiple ways to communicate, so that he doesn't miss out. That's why he has a cochlear implant. That's why we're learning to sign. That's why I'm home right now, teaching him to listen.

Progress with the CI is slow, but expected. Because of his age (13 months), I can't expect him to belt out words, considering he probably wouldn't be speaking even if he could hear! He continues to turn to loud sounds, and I constantly point to my ear and ask "Do you hear that?" I also try to talk constantly to him, to expose him to the spoken language he's missed for the past year of life, plus 8 months in the womb (he didn't spend 9 months there). I sandwich signs with words - say the word, say the word and sign it, say the word again. And, we're still meowing at the meow meows all the time (my favorite... it will never get old!). His speech therapist and teacher of the deaf are great. I look forward to speech therapy today for some new ideas.

I'm anxiously waiting for him to make more sounds though. He used to be so chatty, but it stopped around Christmas, and now (other than his crying/fussing sounds) he makes this one strange sound that's indescribable. It's a guttural sound, that sounds like he's clearing his throat, or sick, or choking or something. It's awful, and kind of embarrassing. My sister thought he was going to throw up, my grandmother thought he was choking, and others just don't know what he's doing. I can't wait until he gets rid of it.

I don't want Lucas to grow up too fast, but sometimes I wish I could see 10 years ahead, and know that everything will be alright... that he can talk, that he can walk (not quite there yet), that his CI is successful, that his heart is still on "monitor-only" status. But I know I can't, so I continue to cling to hope and lots of CI success stories to help me through.

scrap stash full of stories

somewhere between lucas being sicker than a dog, the nasty germ taking andrey out this evening and me praying and wishing and praying some more that this beast of a bug skips me and my nine months very pregnant self - i got to sew.
beth of this sweet etsy shop contacted me to do a swap of goods from my shop.
i love digging through my scrap stash. pulling out each pretty piece of cotton. remembering where it was purchased and who i was with. a trip to gardner village with ashlee or shipped cross the states from jen. a snitch from the stash of allyson and sent over in a care package or an hour long grazing through the tiny quilt shop i found in spokane. i love remembering what they were made into. this was a diaper bag for her. my first quilt - a blankie for luc. a tote for that sister. a bracelet for this one. that piece was snitched from her stash and cut into the shape of a birdie, and that piece a patch for amy's yoga bag. an apron to raise money for nie. and this one, a baby carrier for a most wished for new babe. most of the things i make are made for gifts and sent off. i love to see them in action. and love even more coming across their stories in my scrap bag and thinking of my "kite strings."
my favorite pieces were picked out and matched together. one for a boy. one for a girl. no pink. some classic blue. stitched up, name attached, packaged up so sweetly and sent off to hang on the walls of their wee bedrooms.
and i love that.

Kaci the Koala and Lucas the bionic baby

I LOVE this picture and hope you do too!

out of order.

truckin' on a few hours of real sleep.
four loads of laundry/three pairs of pajamas, so far.
a quick dash to the store for 7-up and 'horton hears a who'
wishing away these monsterous yucky germs.
one very sick but oh-so-snuggly little boy.

2 weeks post-activation

Lucas has been "hearing" for 2 weeks now. He's not doing so badly with his processor either! He will even let it alone for up to an hour. It's most challenging when he's in his high chair or car seat, because it gets knocked off when his head brushes against the back of the seat. I'm SOOOO glad that he's not constantly yanking at it! He's doing pretty well with the babyworn option right now too. So far so good.

I haven't posted in a while, because I really haven't had anything spectacular to report. We do get him to turn his head when he hears loud sounds (drum, clapping, etc.). We're also working with "meow" right now, as we have 3 meows to meow at in the house. I swear the other day I meowed and he looked up and pointed to one of our cats. I'm a really big skeptic too, but it really looked like he did! He's learning about the presence and absence of sound. Don't forget that he's like a newborn again in terms of his hearing.

Today we had another mapping at CHOP. He's tolerating the volume really well, so we came home with 4 new programs to work through until our next mapping in 2 more weeks. He now has more volume, which gives him more access to sound, so I'm really looking forward to seeing what he will do in the next 2 weeks. Today at the appointment, his audi was again really impressed by his reactions (especially for having only been activated for 2 weeks, and only being 13 months old), so we did some booth testing. He gave us the impression that he typically doesn't do booth testing so soon, but thought Lucas might do well. Now, although Lucas wasn't responding perfectly (partly because he was really into his toys probably), he still was responding at 50 dB!!!!!!!!!! I mean, that's not really something to write home about, except for the fact that we couldn't even get him to react at 120 dB previously!!! His audi expects that next time we test him in the booth, he will react between 15 & 20 dB. Keep in mind that Lucas is hearing beeps and buzzes right now, and that's it, but it's still more than 15 days ago! His audi pointed out to us that it will soon be much less about what he does in terms of the mapping and much more about what Lucas's brain will do to interpret the beeps and buzzes. That's why therapy and constant reinforcement of the therapy is SOOO important. He still has a long way to go. But we're definitely on the way, no doubt about it!!!!!

Today marks the first day of my 8 month stint as a stay-at-home mom/full time therapist :), and I am thrilled. It doesn't feel like it yet, because of being at CHOP today, followed by my nephew's birthday party tomorrow, and a crazy week of appointments next week... another CHOP follow-up (too bad we couldn't do that today too, but I did try), a dentist appointment for me, a consult with a physical therapist (we are discontinuing occupational therapy, because when Lucas was assessed at 12 months he scored at 15m for fine motor skills, 14m for adaptive skills and 10m for gross motor skills... so we're going to see whether it would be beneficial for him to work with a PT to bring his gross motor up to par... mostly walking and balance issues), therapy with TOD, therapy with SLP and his bi-annual cardiology visit. We're praying that his heart condition will have improved a bit, and that he will continue to not need medication or surgery. It has taken a back-seat to Lucas's hearing loss, and we pray that it can continue to do so. It still worries me though, of course.

It snowed a little bit last Monday... enough to get out Lucas's sled and walk around the block. Here's a picture of him all bundled up in the cute outfit that Laurie sent him from California for Christmas!!! (Thanks Lou!!!).


Panic At the Disco

“My favorite color is Shiny,” Ralph Wiggim

On the weekdays hummingbirds buzz between California fuchsias, pollinating the brightly colored flowers. A dozen turkey vultures circle the nearby jail, scanning for road kill. Small hawks and crows soar by, swarms of cliff swallows rush about, while osprey and blue herons fish in the waters of Tulloch Lake.

On the weekends, there are no birds. There is no beauty. The steep cave above Tulloch lake transforms from an aviary of the Sierra foothils into an outdoor disco of rock climbers. Dozens of manoxeric body builders, skinny little tough guys, swarm Jailhouse to tackle their climbing projects, random lines of basalt holds that dance up the wall. They bring electronic barometers to remind themselves that 62 degrees fahrenheit and 25% humidity means they have a 57% chance of success. They lug twenty pound car batteries to charge their portable vaporizers and fuel their marijuana addictions. They wear Ipods, t-shirts with curry stains, funny hats, and their favorite pair of underwear. They do anything to bring themselves luck as they prance about the base. Sometimes the spandex glad dancers even bring climbing gear.

The blocky, overhanging rock of the cliff, the Jailhouse demands that the sport climbing afficiando wear sticky rubber thigh pads, commonly known as Colorado etriers. Rectangles of sticky rubber are adhered to neoprene pads to help the sport climbers stick their knees to the rock so that they can rest on their abdominal muscles and rest their tired fore arms. While some of the climbers use adhesive spray to keep their pads in place, the majority of the sport climbers wrap the top of the pad with duct tape. After each attempt, the tape is peeled off the leg, wadded, and carried out of the crag at the end of the day. With an average of seven pitches climbed during the day and a wrap for each leg on every pitch, the duct tape adds up quickly. I sentenced myself to forty three days at Jailhouse, which translated into a large amount of duct tape to carry out. In an effort to consolidate my trash, I started to make a ball. Eventually, the tiny bits of duct tape snowballed into something bigger, something to cheer up the crag, something to reflect a little light into the dreary bits of the obsessive work of Jailhouse. The duct tape ball transformed into something else, something like a disco ball.

“We need to wrap it tighter,” Rob Miller laid his strips on the basalt talus, then placed them over the ball, pulling the mass of tape into a spherical shape. “We do not need fluff. We need density.”

I nodded. The blonde tough guy belayed me half of the time I went to the crag. As a good friend, and climbing mentor, he saw the fun I was having bringing the ball together and wanted to join in. Rob wove a cradle for the ball out of the cut end from my climbing rope, and strapped more tape around the ball, suddenly turning the ball of trash into a mace.

With a cord now attached, we were able to attach the ball to our harnessed and climb Soap on a Rope, a popular testpiece in the center of the cave. It was fun. We guessed about the weight of the ball at the base.

“Twenty pounds!” said, Matt Pound.

“Maybe more like ten,” responded Steph Ko.

“It’s at least fifteen,” scoffed Rob.

The climbers passed the ball around the base, each person tugging on it a little, giving it a weighted look, and imagining a scale in their minds
Pete Chasse hefted the ball into the air.

“It is a little heavy,” he said. “You both climbed it with the duct tape ball?”
Rob nodded.

“Even I did it Pete,” I pointed at myself and gave a crooked smile.

“Okay. I’ll try it,” he clipped the ball onto his harness and started up Soap on a Rope. The crowd giggled as the ball pendulumed.

“Oh god! It’s gonna hit someone,” said Matt, worrying about the safety of the others around him. “Watch out Lidija!”
Pete’s belayer carefully stepped out of the way.

“Oh my gawd!” she yelled. “Peete! Peeete! Be careful Peete!”

“It’ll stay on,” responded Rob. “I climbed it twice with the ball.”

“This is classic,” Matt pulled out his phone camera and snapped away as the Jailhouse hardman danced his way up the steep route with the grey disco ball.

With every passing visit, the duct tape ball grew. We stopped fixated on sending our climbing routes. Instead we thought about the steady growth of the duct tape ball. Visiting the crag became less about successful ascents and more about the continual growth of the ball. The ball gained historical value. After Tommy Caldwell completed the second ascent of Tower of Power, the cliff’s hardest rock climb, he contributed to the duct tape ball. Ethan Pringle added his tape after doing some crazy toe hooking bat hangs. The duct tape ball helped Jailhouse become a fun and silly place. I pranced around the crag showing off the enormity of the duct tape ball, swinging it over my head, and hoping that everyone was contributing. The ball was almost ready for the sequins and glitter.

“We need to hang it,” Rob, the blonde tough guy, grabbed a bit of thin cord and some nuts from Coiler’s tiny wood shop at the farm we stayed at in nearby on Chinese Camp.

“We should make it a disco ball,” I said.

“Let’s hang it while we have the time.” The veins in Rob’s forehead protruded.

“I am not sure when I am coming back.”

. For the duct tape ball to be more than a pile of trash hanging from the cliff, there would have to be a little more creativity and a little more effort. Sparkles, sequins, and glue needed to be brought to the crag and a small mess needed to be made and cleaned. For it to be truly worthy, would require effort. With some self doubt, I acquiesced and gave up my project to a more demanding man.

Rob climbed high onto the wall, clipped into a bolt, then reached over and girth hitched the ball to a 3/8” stud between Alcatraz and Cell Block. The ball dangled ominously in a small alcove of steep basalt.

“It does look like a piece of trash” Karl, a clowning local asked. “Are you sure it’s well placed?”

“Well,” I responded, “there’s a better chance of the start to a popular 5.13- falling off then the ball hitting someone. Plus there’s history.”

“If the ball is well attached and not just shoestring that is cool. We want the basalt ballast ball to be solid if it’s going to keystone the wall together.”

I smiled and reiterated the diligence Rob had applied in fixing it to the wall.

“Okay,” Karl said. “I guess I do like the idea of Rob climbing up there to hang his duct tape.”

“What’s that?” A group of hikers came to the cliff and noticed the ball right away.

To the casual observer, the duct tape ball obviously had a purpose, or at the least a story. The hanging grey spore, appeared more like a trashy trophy then a sparkling disco ball. Obviously, there was history there but it was not the best kind. In the whirlwind of the creation, I had neglected my own needs and desires. I neglected to stay true to myself, I neglected to remember that my favorite color is shiny, and I had to give up reality for my imagination.

Eventually, Mikey Chaffin, a Bay area nurse, climbed to the upper reaches of the cave, swung over, and unclipped the ball. I ran into him in the darkness of Camp 4 after he removed the ball.

“I almost died!” he said. “I swung around and clipped into the ball. I almost took myself down with it,” He put his arm around my shoulder. “I hope you do not mind that it was taken down but some random hikers asked about it.”

Removing the ball helped some of the obsessed climbers at the crag. For them it swung about ominously, hanging over their heads, and preventing them from sending their projects. They gave the duct tape ball a power over them so the ball’s removal was cathartic, they were able to do a little better on their projects because the curse was removed. Rob felt angry to see the symbol of his hard work removed. The ball had given him purpose a reason to return when he could climb no better, it gave him a reason to return to the Jailhouse when he saw no progress on his climbing projects. The idea to keystone the crag worked initially but then it all fell apart.

For a few days, as the herons fished, as the swallows rushed by, as the vultures lurked above the jail, and as the hummingbirds buzzed, the duct tape ball swung in that high corner. Whenever the light hit it, I saw a disco ball.

"teach your children well" -CSN

he is absorbing new bits of information faster than i can keep up.

it felt so good this morning to be a real part of this holiday.
this martin luther king junior day.
not just a day off.
a day of no mail.
school cancelled.
banks closed.
a day of true reflection.
and celebration.
a powerful event.
a quick minute to teach my boy about something very important.
he learned a new name today.
of a special man.

and i am grateful to have shared a moment of gratitude with my boy on my lap.

"...h-h-h-hey mom, remember today when we rang our bells for martin-lu-lu-luther-king? remember when we clapped our hands and sang?"

collecting the prettiest of treasures to create the perfect nest... for you.

"your nesting. and it's driving me nuts" andrey said to me today. granted it was just after i'd asked him if he'd paint our bedroom, right now. after hanging a curtain rod for me. after sanding and painting a crib for us. after putting lotion on my feets. after rearranging our bedroom furniture. after paying for more fabric. after countless going-to-bed-lonely nights so i could stay up downloading perfect songs for the birth music that will meet this babe. after loving me big. waking up with me. putting up with me. getting me one more glass of water. one more dinner i.did.not.cook. i'm finally at three weeks {please only three more weeks} left to go, getting on his nerves. i'm a lucky girl and this belly/nest is ready to welcome a new love into our lives. well almost...
lindsay's journal - march eighth, two thousand and six - a letter to lucas jude's our three year anniversary. andrey and i. next year you will be nearly one - and very real to us. we will know your name - your face.
the countdown has begun. with every ache of my belly i wonder if you are on your way.
i lay in bed last night in utter amazement at my body's ability to grow you. everything happening as it should and your wiggles are evidence that you are healthy and safe. how did i learn this? to carry you and love you in this way? it's so incredible.
the house is ready for you. our hearts are ready for you. now we wait for you to be ready for us. i love you so, my baby boy. i can't wait to hear you. feed you. hold you. my body/belly will be so lonely for you. but i will love to kiss your cheeks instead. see you soon, my boy. love, your mama, lin

and here we are. nearly three years later and my boy is very much real to us. he's snuggled up in our bed after a day of chatting and laughing and playing and practicing abc's together. i know his face. his little boy voice. his scruffy blonde hair. his belly. his breath. my boy. do i even remember life before him?

here i am. growing my second little birdie boy. lukeys baby brother. and soon we will know his name. his hands. his baby eyes. and it will be like he's been here all along. we'll all fall asleep together each night snuggled safely in our family nest that andrey and i have created together...


Thanks to all of my blog friends for your advice on keeping the processor on! We're still trying out all of your ideas... every time I think we've found the solution, something doesn't work right. I know it will come though, I'm sure of it! And I'm being very patient! I definitely think it's easier than his hearing aids, that's for sure!

Every time that I put his processor on, I think of the video below. Nate and I first saw this a few months ago, and it has stuck in my mind. Luckily, Lucas just kind of stops what he's doing for a moment, and then smiles. Maybe that's because he's still on his first program, I don't know. Nonetheless, this is a very interesting take on what it's like to attach the coil, something I will never experience, and Lucas will not be able to describe for quite a few years.

Happy Hearing Birthday!

Woowwww, what a day! Thanks to everyone for their encouragement, prayers and well wishes! The day could not have been more exciting for Lucas!

Activation was great, fantastic, beyond expectations, amazing and (enter any other positive exclamation here). He did really, really well. The audiologist was thrilled by his reactions, even a little bit surprised. He conditioned to the sound right away and turned consistently to the little animal in the box almost every time. He did not cry, but rather stopped what he was doing, turned his head quick, opened his eyes up wide and smiled. Unfortunately, I was kind of behind him to the side, so I couldn't see it all that well, but Nate could, and we got it recorded. I remember waiting for the same moment when he got his hearing aids (yeah, waiting for about 9 months) and it never came. We never got a reaction from him, even once. Today more than made up for that.

We got A LOT of information today, including a briefcase sized box full of lots of accessories, and instructions. Because we had equipment orientation AND activation, the information load was even heavier. I still don't feel as overwhelmed as I did when he got his first pair of hearing aids though. Maybe the HAs prepared us for today...

I would say that even in the half day that Lucas has had his processor (and he didn't even wear it during the 1 1/2 hour drive home), we have re-adjusted it probably 30 times. The behind the ear part will not stay on at all, so it just dangles behind him half the time. But every time he shakes his head or brushes up against something, the coil (which is attached to his scalp by a magnet) falls off too. Oh yeah, and he pulls it off too. So, needless to say, we already used the pilot cap on day 1. I had been warned, so I was not terribly surprised. I know that it will get better, and that we will soon find our solution for keeping it on his head. But for a while, it will be quite challenging. In fact, the audiologist left us by telling us that our biggest job in the next 2 weeks will be keeping it on. Almost every time that I would replace the magnet today though, he would stop what he was doing, look at me, and smile. That made it all worth it.

Yay, Lucas has "hearing". Or does he? Don't forget that he will never hear like you and I do. He is still deaf and he will always be deaf. His hearing has not been fixed. Only time and A LOT of work will teach his brain to make sense of the noise he's hearing. It's not as if he heard Mommy & Daddy's voices today. But, when we spoke to him, he heard buzzing and beeping, which is more than he's ever heard before. He's probably only hearing something like this - beeps, buzzes, but nothing intelligible. In a few weeks, he might hear more like this, and hopefully eventually it will sound like this. Only time will tell.

Thanks again for all the support from everyone: our families, friends, co-workers, and blog friends. You have all reached out to us with encouragment and have shared in our excitement today. Lucas is officially "hearing" on this brilliant day. Now the journey really begins. Enjoy the video that Lucas's Daddy edited for the blog!

enchila-la-las in a paragraph

the wind is howwwwlin' a little somthin' fierce outside. my red berry wreath is flapping away at my front door and the windows are shaking a bit. a*love is at a movie with friends and lucas jude is tucked safely away - in my bed. thanks to my littlest sister jade my belly is happy and full with my first successful enchilada batch. i've got the "poisonwood bible" cracked open ready to soak it in just in time for book club this month (new years resolution #1). today was spent roaming the town with my gram and nearly falling asleep at the barnes and noble train table. tomorrow will bring a happy lunch with my favorite brother. plus a drive around town in my uber clean passat thanks to my husband who (by-the-way) scored his first real contracting job for his very. own. company. clink! cheers to my love. my blogging brains are stuck these days. i'm back to writing in a real live write-your-words-down-journal (new years resolution #2). so we'll see what ends up spilling out over here, too. soooo for now i'll leave you with this: lucas jude age 2/nearly 3 in his skivvies getting ready to do a little flossing:
goodnight loves,

Preparing for CI Activation

We're in the final countdown... 5 days. Here's what I'm doing in preparation. Mostly I'm doing some reading, lots of reading. The following list should serve a few purposes, least of which is to toot my horn. First, if there are parents of newly diagnosed children, it can serve as a great place to start. Second, for those experienced parents out there, if you have other ideas besides what I'm already doing, I would love more suggestions! Third, for all of my friends and family who read this blog, and to whom much of this may sound foreign, I hope you gain some insight into what we are doing for Lucas to prepare him for the rest of his life.

1. I'm taking the John Tracy Clinic correspondence course. I'm on baby lesson 3, which is perfect for his age and soon to be activation. Up until this point, I've been unable to use many of the suggestions because of Lucas's lack of access to any sound. That will soon change. I HIGHLY recommend this course for parents of deaf/HOH children.

2. I'm also reading A Father's Love, a book by a father of a 6-year old girl, bilaterally implanted with perfect oral language. The book describes the process he went through, step-by-step, to teach her how to listen and speak perfectly. I'm also corresponding with him regularly, and he's helping me to make some really important decisions about Lucas's deaf education.

3. I continue to read some PHENOMENAL blogs about children with successful cochlear implants: Drew, Gage and Brook, Christian, Gavin, Landry, and others. I regularly read Deaf Village, which showcases blogs about deafness (and on which Lucas's blog is highlighted when I post). And I read 2 blogs of kids that are at pretty much at the same point that we are with Lucas, Aiden and Mikaela. These mothers have been a great support to me over the past few months.

4. I read lots of lots and posts on the following listservs: cicircle, Listen-Up, LVAS, and learn2hear. Cicircle also has a website, that has a lot of great information. These listservs provide me with a lot of information that I wouldn't even think to ask about yet, but that I file in the back of my head. I don't comment much, because I don't have much to add, but I read and learn a lot!

5. NEW: I'm educating myself specifically on oral deaf education, and what needs to be done to mainstream Lucas.

When Lucas was first diagnosed, we were like "great, let's learn sign language." We've learned since then that there are SO MANY more options to being deaf than sign language. One of my first posts on this blog was about our choice of Total Communication (TC) as our communication method with Lucas. That was a great choice for him 6 months ago, but not anymore. What was right for Lucas 6 months ago, today and 6 months from now can all be very different. It's good to be flexible (and realistic). I feel like TC may give him both mediocre speech and mediocre sign language (not even ASL). Our only goal for him right now is to have excellent, if not perfect speech. If for some reason he does not receive a lot of benefit from his CI, then we will re-evaluate. For now, we're taking an Auditory-Verbal approach, but we're still going to use some signs with him (in the same word order as English) unless we feel that it's getting in the way.

Since it is our goal to mainstream Lucas by first grade (if not sooner), then we need to learn as much as possible about the subject. That's one of the main reasons that I will be taking a leave of absence from my teaching job. We're not going to sit around and wait and see what happens. We must be proactive. This is when he must begin to develop the oral language and hearing that will guide him through the rest of his life. There is a window when this acquisition must occur, and we're not going to miss it! I'm also preparing for Lucas's upcoming IFSP review in February. I need to have very specific ideas about the goals and services that he needs to meet our goal of a mainstreamed oral education. I plan to visit the HOH preschool program in our area, another reverse mainstream preschool in our area that would provide ample speech support (as another preschool option), the HOH kindergarten class in our area, the Pennsylvania School for the Deaf, the Clarke School for the Deaf, and others. Even if that's 2+ years away, we need to have an idea what we're working toward.

I know that Lucas will not hear me speak on Friday, but he will hear something for the very first time! I'm so excited, thrilled and scared to death at the same time! One thing is for sure, it will be a very, very exciting day. Any suggestions for my continued preparation and future reading are highly appreciated!

we've had ourselves a merry little christmas...

and an even happier new year...