carmel

we took advantage of ryan's time off work and traveled to carmel for a mini family vacation this week. 

after leah's eeg {and some naps}, we packed up the civic and headed south. we stayed at the carmel valley ranch. tweed couches, two fireplaces, wrap-around deck, spacious bathtub, pillow-top mattress, two flat screen tvs and my little family. perfect.

we all slept well and ended up being a little more lazy than we planned due to the cold weather and our poor packing. but we enjoyed strolling along cannery row in monterey as well as the famous aquarium with colleen, claire and chloe. they are regulars there so they showed us the highlights like the ballerina jellyfish and the hot pink flamingos. we also saw otters, fish, penguins, sharks and eels and we got to touch starfish, crab, kelp and lots of other slimy things. we rode the wheelchair elevator {thanks, claire!} and i took chloe on an escalator ride. 

we then met their dad jared at the whole enchilada in moss landing. the owner brought the girls some seriously awesome heart-shaped sunglasses. leah wasn't a fan at first {she hasn't been for almost two years!} until she saw claire sporting hers. she's been all smiles with them on her face ever since. plus, jared made a pivot table joke and ryan understood it and genuinely laughed, so i think they're destined to be friends.

friday morning was lazy as we packed up, swung on the swing and checked out. french braids made their first {and most likely last} appearance on leah in a looooooong time. we gobbled up a grand slam and made our way home ready to ring in the new year. it was a perfect, quick and much-needed getaway.

electroencephalogram

we figured a first-ever ekg goes hand in hand with a first-ever eeg. mostly we just love spending our vacations at doctor's offices. this test was recommended to determine if leah has any seizure activity. we aren't really sure. and if she does, they at least aren't bad enough to harm her daily activities in any way, but we felt it was good to have a baseline or  to determine if there was anything going on that we couldn't see. 

i called the office monday morning to see if there were any special directions for the procedure wednesday morning. did she need to fast? be awake? be tired? bring comforting items? you never know. and it's a good thing i called because apparently this was a sleep deprivation eeg. she needed half as much sleep the night before as she normally gets. so rachel kept her up while ryan and i gorged on filet and cheesecake. we rocked her to bed at 11pm and tried our best to wake her up at 5am. it took a few minutes, but she did it. at 10 am when it was time to start, she peacefully passed out in ryan's arms as nurse josephine poked, prodded and glued the nobs to leah's head {i think i counted 23?}. 

oh yah, and ryan passed out too.

i tried to get info from nurse j about the activity on the screen, but she was a closed book. she assured me the spikes i was seeing were sleep patterns and told me the neurologist would be able to read it for us. but she was typing like crazy. 

luckily, a friend warned us that a regular neurologist will look at an eeg from a girl with rett and flip out. a rett neurologist will just say it's a "brain on rett." so, once we can get past that {because i'm certain her brain activity isn't normal}, we'll see if there is any other unusual activity going on. results to come soon and we're hoping for the best!

p.s. leah left with an awesome hairdo. and we all came home and slept.

his domain

we are the proud renters of a garage. to be honest, it was a top selling point for us when we were looking for a new place to live this summer. that and no shared walls. yippee! plus, not much is cuter than deep teal garage door. i love it.

however, we moved in quickly and at a super busy time. so we just threw stuff in the garage without really organizing it. and it drove us both nuts for months. we've done some small-scale rearranging and de-cluttering, but nothing that really made a dent. and we continued to shift things around to find boxed items or store new things. it's a super tiny garage, so it doesn't really fit our car. if we did park inside, nothing else would fit and, since we only have one car and one outside parking spot, we opted to use the garage space for other things.

it was a wreck.

so, with ryan off work all week, he decided to tackle the garage. i didn't even have to twist his arm. he did it with earbuds in his ears and a smile on his face. he kept walking inside and saying, "i love having a garage." it kept him busy for an entire day, but it's complete! {his part at least - he piled all of my stuff into one humongous stack in the corner that will be tackled this month.} i can now get to the dryer without climbing over bags and boxes and tools and crafts. and i don't hesitate to put the groceries away in our make-shift "pantry" because it's so easily accessible. three cheers for ryan!

aaaaaaaaaand, because we did so much de-cluttering {an entire trunkful went to goodwill}, we now have a perfect spot for miss leah. phew!

ruth's chris

about two weeks ago, i got the following email in my inbox:

"Hey hot stuff.  do you want to go on a date with me? -rl"

thanfully, it was from my husband. and below his quick note was a reservation for dinner at ruth's chris. yum. we don't go out all the often and we don't normally eat at super fancy steak houses, but i won't complain! 

after i replied in the affirmative, i received an email from ryan detailing all that he was planning to order and eat that night. it made me laugh. it was a lot of food and i could tell he was beyond excited. 

so, we headed off to san francisco, just the two of us, in the pouring rain. we immensely enjoyed our succulent shrimp, lucious lobster and fantastic filets. not to mention the broiled tomatoes, loaded potatoes an down-right amazing cheesecake. 

i. was. stuffed. 

thanks, babe. i'll be your hot stuff any day.

p.s. i think i did a pretty good job with the cover-up, but you can still see some of my swollen and bruised nose from this morning's incident.

crrrrack

trying on a new nose in a gift shop in carmel in hopes the fake one would feel better?

i heard it crunch. 

at first, i thought the noise was only loud enough to hear in my head. but ryan heard it too. later, he said it sounded like a handful of sticks all snapping in half at the same time. i wasn't previously aware that breaking cartilage could sound like that, but apparently it can. 

and, if you're wondering, not only does breaking your nose not sound good, it doesn't feel very good either. 

it was my wake up call this morning. ryan got leah out of her bedroom and put her on our bed to say 'good morning.' he set her down on all fours. i opened my eyes as she was coming down - a big grin spread across her face. my sleepy eyes promptly closed and the next think i knew, leah had suddenly flipped to her back, the rear of her head colliding with the bridge of my nose. 

my first {and very vain} thought was "oh, this is not going to be pretty."

my second was, "man that hurt like h.e. double hockey sticks" {only without the double hockey sticks part}.

ryan whisked leah away and brought me a bag of frozen peas with a washcloth to cover it. the peas happened to have an indent on them, perfect for me to insert my nose. well, i thought it was perfect until i realized the indent came from the finger of a friend that also used the pea's frozen healing powers after a steam burn on christmas day. gross. 

the injury is tender - and bruised - but not misshapen, thank goodness. it's definitely broken. 

my reflexes are on hyper-alert {i flinch every time leah's head or hands come within 17 inches of me} as are ryan's never-ending nose breaking jokes. but, that's why we keep him around. he makes us laugh. i just need to remember to not laugh too hard - it crinkles my nose and that doesn't feel very good.

leah's christmas present

i know i'm irrational. you don't have to tell me. but, there are some dreams i guess i'm just not willing to let go. and leah's christmas present this year was one of them. 

rewind 26 years. i was three and i had just been gifted the best. present. ever. yellow, red and blue plastic, adjustable, fisher price roller skates. once i inserted my feet, i don't think i took them off for weeks. maybe months. gliding aroudn in those beauties is actually one of my very first memories - and it's pretty vivid. for years, i've known that if i had a daughter, she would get similar roller skaes for her own third birthday.

fast forward for february 2010 - leah's third birthday. i thought about it. yup - it definitely crossed my mind on multiple occasions, but we had recently received {ever so reluctantly} leah's diagnosis and i was heart broken. roller skating carefree around the house was something my three year old daughter would never do. the idea of roller skates were flushed down the toilet with a bushelful of other dreams.

a month or two later, i snapped out of it. sure, leah would never skate around by herself. but that didn't mean i couldn't help her experience the joy i felt. she'd just experience it in a different way. i decided she could have roller skates for christmas. 

fast forward to august 2010. we were in utah on vacation with ryan's friends and leah was at grandma and grandpa layton's house. they emailed us each night with an update on leah's daily activities and included pictures of what they had done. running through sprinklers, playing at the park, swimming in the backyard, wearing new princess jammies. one night we read that they bought leah rollerskates - and attacked a picture of the excitement.

i burst into tears. 

ryan got a look on his face as if to say, "why is my wife crazy?" and he had every right to do so. i blubbered through my explanation beginning with my own roller skates, including my disappointment on leah's third birthday and my resolve to get her skates that upcoming december. after a lot of talking, we decided we'd ask his parents if we could have those skates be just for grandma and grandpa's house so i could get leah her own pair for christmas. 

i know they thought it was irrational. ryan thought i was being ridiculous. and, sentiment aside, i could see that too. i felt awful. but, the sentiment and the years of dreams couldn't be laid aside. not this time. 

to make sure it was something leah wanted as well, we looked at lots of skates online. her face lit up when we talked about them. we looked at gray skates, red skates, white skates, blue skates. but none got a grin so big as did the hot pink ones. 

when i asked if she wanted santa to bring her roller skates her silent answer was undeniable. it was written all over her face. and so, december 2010, my little three year old got her first pair of skates. 

and she was even nice enough to share. 

sure, she needs my complete assistance. she always will. but i can tell she enjoys it. and it makes me so happy to see her experiencing something so completely normal. 

irrational? maybe. but definitely a dream come true.

almost all was merry and bright

christmas day didn't go exactly as planned...but i try not to really make hard and fast plans anymore. there's less disappointment that way. :) there was a bit too much excitement and i'm not sure how well miss leah slept, so she was back in bed, fully dressed by 9:30am. at least the tantrum was leah's this year, not mine. 

after we were entirely spoiled by grandmas, grandpas, aunts, uncles, cousins and friends, we spent mid-morning gorging ourselves with eggs, hashbrowns, fruit, sausage, juice and scones with the smiths and mcphies then headed back home for afternoon naps. 

that evening, both families joined us at our house for the best {and biggest} crab legs. ever. 

ryan even had to purchase a 32 oz. pot to steam them in. and with that purchase, he lost the right to ever say anything about me purchasing items that "take up too much space."

we played some games and entertained the kids with iPad apps and movies. 

i think we even got jackers to smile? maybe once. 

the night ended with leah barfing all over herself, her jammies and her sheets and blankets. i think it was just a bit too much food {more than one person admitted to feeding her as she strolled by - she's kind of a mooch} and too much excitement. 

 

but overall, a very merry and blessed day.

the night before christmas

christmas eve was a success! a quiet day and evening with our little family of three. 

 

ryan's favorite chicken cordon bleu hand pounded by him and prepared by yours truly. comfy new pajamas and a new christmas movie {alvin and the chipmunks this year} on ryan's new christmas present, conveniently delivered earlier that day. 

i guess it was too fragile for santa's sleigh? ho, ho, ho ry. this counts for your next six christmases. 

the christmas lights twinkled and holiday music resonated throughout the house. ryan even recited "the night before christmas" for a sleepy, sleepy leah. i think it was about as perfect as the layton house is ever gonna get. and i loved every second.

perfect

{these thoughts have been a long time in the making. they're still not complete, but they've been simmering in my brain for so long that i wanted to get them down, somehow, even if they are rugged and unfinished.}

throughout the past year, i cannot count how many times people have said to me, in regards to leah and her struggles, "you are perfect for this." or "i can't think of anyone else who would be better for this job than you." now, at the risk of sounding like a complete and total jerk, there is nothing in the world that makes me want to throw a rock at someone's head than these phrases {or a variation of them}. 

but the problem was, i wasn't sure why these words - meant as a compliment - were so utterly hurtful and painful.

i think, at the heart of it, i just don't feel perfect for the job. how could someone who is perfect for something feel like a complete mess at the end of every day? how could someone who is perfect for a child wish, with all their heart, that life was somehow different? why would i go to sleep with a sopping pillow and wake up with puffy eyes if i was meant for this job? would you really not succeed as much given the same situation or are you just secretly glad that you don't have to? and on, and on, and on. 

i don't think anyone is really ever "perfect" for a trial. in fact, i think for me it's the complete opposite. i think i am perfectly awful at and perfectly wrong for this {and other} trials - and that's the whole reason i have them. they're areas in which i need to progress, to grow and to become better. i cannot even begin to think about getting through my trials alone. and because of that fact, i find myself on my knees pleading for help each morning and night. reaching out to my father in heaven, reaching out to others who have been or currently are in a similar position.

daily i see others gracefully glide through life with such courage and strength and ease. i'm sure they are struggling, but they're struggling with things that aren't difficult for me. they're struggling with things that are perfectly wrong for them. and they are learning. and growing. they, like me, are striving to become the people they have the potential to become. 

all because we are imperfect.

sometimes we realize these imperfections because we are given trials. a child is born with a handicap or disease, a loved one becomes ill or passes on. sometimes others throw those trials in our faces - they only happen because of the choices of others and yet we pay the consequences. drunk driving is a biggie that comes to mind. sometimes they aren't even "our" trials - but trials of those around us that we love. i don't really think it matters if our struggles are a result of our own doing, someone else's or no one's at all - they're still really, really hard.

but, in thinking about all of this, i've realized that the compliment factor comes when you realize you are doing something about it. you are growing. you are learning. you are becoming more than you were. you haven't given up. and because of that, no matter the outcome, you can rest assured you have done your part. 

venting is good. crying is needed. laughter is essential. but no matter what, you just pick yourself up and keep going.

a couple months ago on leah's blog, i quoted elder jeffrey r. holland, an apostle in my church. in part, he said, "...Christ knows better than all others that the trials of life can be very deep, and we are not shallow people if we struggle with them.  But…the Lord expects us to believe!”

we all have our weak moments. and it's okay to be weak. we all feel as if we might crumble under the load we have been asked to bear. but we're not asked to bear it alone. i am imperfect. you are imperfect. but we have a perfect Partner. 

so, i'll just go on being imperfect {and trying my best to not throw rocks at anyone}. but i'll also continue trying and learning and growing. i can be perfect at that.

{photo cred goes to ry guy - rocks in monterey jan 2009} 

electrocardiogram

electrocardiogram, aka ekg. just another word i've added to my regular vocabulary. it was requested that we get this test done for leah to check for long qt syndrome, which is an increased risk for those with rett syndrome. it was on that never-ending list of things to do from november and i was told it was on a walk-in basis and would take 5-10 minutes. 

i'm not sure why i ever believe anyone in the medical profession anymore when they tell me anything about a timeline. luckily, i decided against a quick trip in the morning and opted instead to go in the afternoon when we had a bigger window of time. after getting lost and/or being misdirected FOUR times, a kind doctor offered to walk us to the correct site as he was already on his way. 

it was a quick wait. we were in faster than i could peel a cutie for leah. and then we waited and waited and waited and waited for nurse mehri to find the ekg order in the computer. it was nowhere to be found. "are you sure your doctor ordered the test?" "are you sure she's a pediatrician not a family practice doctor?" "are you sure you go to such-and-such clinic?"

really? yes, i'm sure.

after 20 minutes of these and similar questions, the nurse mehri told us she could just enter leah's info manually because we were already there and she didn't want to waste our time. phew. 

leah was wary of the sticky electrodes until we explained to her that they were jewels and she would look just like a princess. i even put one on my hand to shower her it wouldn't hurt. after that, the only trick was to keep her still so as to not rip off any of the 15 nodes. good thing my four limbs are noticeably larger and stronger than hers - and that she seemed to like my out-of-tune rendition of i am like a star shining brightly. nurse mehri continually urged me to keep singing. maybe i'm better than i thought? 

we had a sad leah when it came time to remove the "jewels" - because let's be honest, ripping very sticky electrodes off you chest hurts! all in all, our first ever ekg was a success! results are to come - hopefully those are equally as successful.

i (heart) santa

if anyone was wondering, santa at the stanford mall is amazing. he's obviously the authentic santa. not some low-budget helper. he's the real deal. 

with a little help from leah's mom, he asked a list of questions that leah knew the answers to...and she answered with her switch. enjoy:

Make an on-line slide show at www.OneTrueMedia.com

 {s:what's your name?

l: my name is leah. i have been a good girl!

s: what do you want from santa?

l: i'd like santa to bring me some roller skates?

s: roller skates? whoa woudl that be nice! i'll see what i can do. 

m: what do you tell santa?

l: thank you, santa.

s: ah, you're so welcome. you're so welcome. i'll see what i can do about the roller skates, okay?}

also, we went with our favorite boyfriends cam, ty and jack. those boys were enamored with leah and her new-found voice. she told them all about her favorites and the answered her questions...and then they sang jingle bells together. it was pretty much awesome.

{to see leah's letter to santa this year, click over to her blog.}

one last try for holiday cheer

with so many attempts to try and see lights or do christmas-ey things only to have them flop, i was running out of ideas! we planned to go to the oakland zoo to see the lights there, but opted to stay home after a pretty busy day and do leah's ekg instead. fun, i know. so when my cousin called to see if we wanted to go get hot chocolate and see the lights in their quaint downtown i was all for it. what can go wrong with walking the streets of a darling town with friends and family and drinking hot chocolate? not much. so we did. 

i almost remembered my camera. so did sarah. and mary's almost ran out of batteries before we got one shot...without her even in it. leah almost looked at the camera in time {that one and only shot we got before the camera died} and it didn't even start raining until we were almost home. 

but, we still had a great time. better luck next year?

merry christmas, love us.

so, apparently you can't order the same number of christmas cards as last year and add half as many again to your list. it just doesn't work. who knew? 

so, i apologize to those who thought they might be getting cards. totally my fault. 

but, merry christmas 2010, anyway. thank goodness for the internet.

photographs by: julia wade photography

the d.m.k.s come to visit!

when the d.m.ks {my bro and his family} come to town, our entire house is transformed into a technology wonderland. our aging california duplex almost didn't have enough power outlets to hold all of the additional iphones that were used this weekend.

but, we don't mind when they bring presents like this {merry christmas to us!}

and this. 

friday night we made our way up to the oakland lds temple. the grounds were beautifully lit up and the visitor's center was a warm, dry refuge from the {refreshing, but wet} rain. the 50 minute commute turned into 2+ hours as we inched our way down 880. we crawled along a 1.3 mile stretch in 1 hr. 20 minutes thanks to what we can only assume was a major accident. the cars were cleaned up by the time we passed. but, we made it home. 

saturday dan and ryan cheered the cougs to victory and visited the confectionary operating systems statues at google while heather and i watched the kids at home. 

after naps, we again braved the rain - this time in san francisco. i rode in the penalty box {shhh!} so we could all go togther. ryan drove the dmk's new ford edge - which, i think only helped my case for a new car??? we were fascinated by the power locks and windows, among other features. 

we made our way to the golden gate bridge lookout, but saw no sign of the bridge. just lots of fog and rain, in true sf style. 

the rain subsided just in time for us to stroll along the wharf, eat dinner at allioto's, get some goodies at the candy store and enjoy an after-dinner snack at ghirardelli square. yum. and all without much of a crowd. apparently the rain scares away most would-be holiday tourists, but not us. we made our way home via union square to peek at the tree and the skaters on the ice rink {maybe next year}. 

our nights {both of them} were filled root beer and/or dr pepper floats, cuties and phase 10. 

it was a quick - but most definitely fun - trip. so happy to have family stateside even if it does end up taking them 9 hours because of a new baby. thanks guys! miss you already.

recital #7

i can't believe it was already time for another layton piano studio recital! it was my seventh, which is so hard to believe. i so enjoy watching these students learn and grow and really find their niche within the world of piano. 

it wouldn't be a true recital without having at least one mishap. this time, it was some forgotten sheet music. luckily, his dad drove home and my student still got to play while we all enjoyed dessert. 

we were only missing one student this year - and we lost her to her first-ever school dance, so i'll let it slide. 

these kids just eat leah alive and she eats it up! i love the way they interact with her and make her feel like she is also part of the show.

i'm completely and utterly spoiled with gifts and kind words at these performances. and i got to play sleigh ride for the second year in a row as a teacher, which is such a fun tradition for me. i actually enjoyed playing so much that i'm considering learning and performing something all new for my spring recital. maybe. any suggestions? 

to see how we've all grown: winter 2007, spring 2008, winter 2008, spring 2009, winter 2009, spring 2010

noel

we have a lot of christmas decorations. some i love more than others. some have sentimental value. others are just plain awesome. 

problem is, we don't have a lot of space. we love where we live, but two bedrooms, a tiny bathroom, one kitchen and one small front room doesn't allow for much decorating space. 

we had to move our coffee/end table out of the house to allow room for the christmas tree. we don't have a mantle so the stockings are hung with care on the bookshelf, and sadly, there was no place to put my lovely willow tree nativity this year. we had to pick and choose. 

so, we chose: tree, stockings, ryan's nutcrackers {lining the top of the piano}, card holder {gracing our entryway}, wreath on the door and advent on the door. that's pretty much it. 

except i have these block letters that spell out "NOEL" on them. i like them, but they don't have any hardware on them, so they don't hang...and you kind of have to have them balancing on something. i got the brilliant idea to set them behind the music stand on the piano so they'd be in the background of whatever i was playing. 

later that night, i walked around the corner to see this:

does anyone else see anything wrong with my lovely noel sign? ryan thought it would be hilarious to switch the letters so it spells "LEON" instead. i noticed right away and ryan was shocked that i did. but he thought himself pretty funny. he's a comedian, that ryan. i think we'll keep him around. he keeps me on my toes. 

if you're wondering, we left it that way for a good two weeks. and no one else noticed. and also, if you're wondering, ryan wanted me to promise that if we ever had twins, a girl and a boy, we could name them noel and leon. 

i made no such promise.

vasona park bust

remember how i said i wanted to get out and experience more this holiday season? well, attempt #2 was nearly as much of a bust as christmas tree lane. 

kristen and lindsey went to vasona park with their families last year to see the lights, ride the train and ride the carousel. i wished i had gone. i run through that park on my long training runs and have always wanted to see it lit up at christmastime. i don't remember why i didn't go last year. could have been busy? could have been too bummed out about leah not being normal like their kids? either way, i didn't go. and this year, i was determined to try. ed was the only lucky husband who could get off work in time, so the harmans drove one car and leah and i piled into the katz car and made our way down to los gatos. there was tons of traffic, so it took awhile. the entire way, we were encouraging good behavior with the promise of a train and carousel ride. and when we pulled up, it was closed. we went on monday night and the rides are only open on the weekends. we were still allowed to drive through the park to see their lights {which are much cooler for adults than for infants and one-, two-, three- and four-year-old children}.

as kristen drove 2mph through the car-lined park, i held emery and we tried to calm down three angry and tired children. 

we decided to award them with some frozen yogurt at a nearby shop. 

 

and this is what happens to five kids four years and under when they didn't get what was promised, are hyped up on sugar and it's way past their bedtime. crazy. that's what you get.

again, the company was great, but the activity was a bust. here's to reading information thoroughly on the internet before making promises and venturing out with your kids. this is what the older two of the three men have to say about our evening.