write it down

some of you may know i've always had a little dream of being a "writer." i've always liked to write. i don't think i'm the most boring person on the planet, but sometimes it's hard to know what to write about.

i don't want to write novels or essays or anything of the sort. i'm more interested in every day life. you know, those magazine articles you read that cause a smile to creep right on you face without you even realizing it. you know exactly what the writer is saying, but they're packaging it up in beautiful paper with an incredible bow on top in a way you had never thought of before {since you usually just shove things into a box and secure it with a piece of Scotch tape}. the presentation is refreshing. i've always wanted to write like that.

{image from idreamofletters.blogspot.com}

so, thanks to marta and her write club prompts, i bought a writing notebook. i've got tons of ideas in there, and even the beginnings to some great little articles that might someday make it to print.

and, i made a secret writing bog.

yes, it's private. no, you are not invited. ryan's not even invited. or my mom. and they're both upset about it.

and now i need some more motivation.

so, i figured i'd take a stab at an idea i found on my friend cheryl's blog {she found it on her friend natalie's blog...and strangely enough, i think i graduated from the pr program at byu with natalie???}.

it's a topic-a-day for 30 days and i'm going to give it a try. i'm not promising anything incredible here. i'm just exploring a new venue to stir my creative juices and i'm going to wrap it up in a little package i like to call april. 30 posts for each day {i just counted my knuckles again to make sure april had 30 days}. and maybe, just maybe, someone will find a post tied with a pretty little ribbon and a small smile spread across their face.

i bet you can't wait, huh?

up yours, rett syndrome

i was watching some old family videos this afternoon. depending on the day, these videos make me feel different things. today they made me smile.

then i had ryan watch one. his response?: "up yours, rett syndrome."

i couldn't agree more.

for now, i'll share my three old favorites with you. i love that little voice.

and one day {hopefully soon} i'll get brave and post some videos of our little leah as she is now. no worries, she's still cute.

Make photo slide shows at www.OneTrueMedia.com

when grandma comes to town

my mom came to visit! yay!
i haven't seen her since last june, so this trip was overdue. she also hadn't seen leah since then...and leah has changed a lot.she had no agenda and was adamant about seeing us in our daily routine. she wanted to know how we live day to day...she wanted to see happy leah and not-so-happy leah. she wanted to see well-rested leah and very-mean-and-tired leah.

she did.
we ran the dish {or the bowl} and walked steven's creek trail. we shopped and played and talked. she took leah to a park while i taught piano.
she helped me finish {ahem, i said FINISH} leah's quilt. yah, that same quilt i've been working on for more than a year now. DONE. she taught me how to crochet little flowers. the woman's talents are endless.
she created a pattern for my next big project.
we ate scones. no pictures. they were too good to stop eating just to document.
we had dance parties.
we read lots of books...including leah's new favorite that grandma made for her.
leah showed her how cute she is after a bath.
she filled my napkin holder. stealing napkins from restaurants is a disease. she just can't help it.
my sink was empty and clean the entire time she was here. it doesn't look like that right now.
she got ryan and i hooked to vanilla yogurt with fruit and homemade granola. mmm...i'm going to eat some as soon as i click "publish post."

and she's gone now. she enjoyed the 70 degree weather and extra vitamin d while she was here. it's snowing at home. she'll be back. oh, she'll be back.

and this is how we feel about her being gone.love you, shmoj.

linda!

meet linda.

she's a favorite of mine. always has been. always will be. linda was one of my youth leaders at church when i was 16 and 17. and she had just as much fun doing crazy, childish things as we did!

her daughter lives nearby, so when she comes to visit we try to see each other. this time we were successful.

thanks for the nice chat, the updates and the yummy shrimp tacos. can't wait until next time!

{p.s. i just got new glasses. back to the plastic frames for me...and this picture was a deciding factor. yuck. but the teeth look straighter, no??}

ryan went to china

yup. he went during the first week of march. and he loved it. it was kind of last minute because the guy who was on the project ended up getting another job just before they were going, so ryan jumped in last minute.

he flew business class.

he stayed in 5-star hotels.he rode in a rolls royce.
he had lunch with the couple he stayed with in hangzhou 4 years ago on his internship {ryan, why can i not find this picture???}.

he was there for a week and only had meetings on parts of two days, so he had plenty of time to sight see and shop and eat yucky things from street vendors.he bought two new coats {and wore them both at the same time in the freezing cold that was beijing}.
he climbed the great wall {and thus became a hero}.he bought leah a darling dress and a jade necklace.he bought me some jewelry and a pair of jeans...that i will fit into soon. {it's not his fault they were marked incorrectly...and it gives me great motivation because i think they're super cute!}.
and the ultimate gift: 20 packs of mentos. not just any mentos: apple, grape and cola. no, i'm not sharing.and leah was, of course, super happy when he came back.he made me promise to not make any mention of it on blog- or facebook-land until he got back. i obeyed.

love you, babe! as long as you bring back mentos, you can go to china any time!!

sf ballet: take three

disney ruins everything.

good thing i knew the real story of the little mermaid was a tragedy. i think she turns to sea foam? anyway. tragedy or not, this had a very strange love twist to it.

basically, we decided we didn't like their explanation for what was happening {a poet is remembering his friend's wedding...and is pining for his lost friendship...so he cries, the tear turns into the little mermaid and he feels his sadness of lost love through her}. no. no no no no no. we decided that the poet was watching the love story unravel and just felt bad for the little mermaid. the love story was between her and edvard, not the poet and some guy who looked like edvard or something.

okay. now that that is taken care of.

the dancing was beautiful, i thought. so amazing how they could create the sea on a stage. the little mermaid herself had such fluid movement. it was so fun to watch! her costume was a long band wrapped around her midsection a bunch of times and her fin was really pants that were about 2x too long, so you never saw her feet when she was in the sea - she kind of had to flop her legs {very gracefully} around. she is the skinniest thing you've ever seen. she has been in other performances this year and i actually had a hard time watching her because her ankles are twisted a bit and they look they they are going to snap right in half when she is on pointe...but it worked so well for this production. when you saw her feet and legs, she's supposed to be so frail and almost crippled because she can't use them - she doesn't know how.

now riddle me this: all the girls were in these really cool fin pants...and they guys were in these puffy skirty costumes that looked like a tube dress that was pulled down too far. so weird. there was another part where all the girls were in these spiky little tutus and the guys in kind of baggy shorts...and then there was a guy in a tutu. just strange. keep it consistent here, folks.

the sea urchin was a bit reminiscent of darth maul, but he played the part well.

loved the dancing with the sailors {except the one in his skivvy's...and evard's swimsuit was a topic of conversation for another day} as well as the bridesmaids. very fun.

the colors were great. very oceany for the water scenes {duh} and black/white/pink/red/yellow for above ground. i loved it.

overall, a great success. once we wrote our own story.

and you can't beat the company. our third program, but the first time all four purchasers could make it together.

march comes in like a lion?

i guess, if the lion is 80 degrees.

and when it's 80 degrees outside, we wear shorts and go to the park on dates with the men in our lives.
do you love that leah and jack are even dressed alike with no advanced planning from their moms? they really are twins.

we play king of the mountain. we drink apple juice {some of it gets in our mouth} and then play in the sand {some of that gets in our mouth too}. and we cheese it up to please the never-ending photo taking of maren. thanks for humoring me, ty.
and now i'm wondering what the lamb part of march will bring us...

rett syndrome natural history study

on saturday, march 13th we were able to go up to the children's hospital in oakland to be a part of the national institute of health's natural history study for rett syndrome. leah will be followed twice a year until she is 6 and then every year after that as part of rs research.
i have to admit, i was a bit nervous {siblings read: alagonchy} to go. i knew we'd meet other little girls with rett syndrome and i wasn't sure how i would react. i knew leah was on the high functioning side of this monster and i didn't know if that would make me feel like a wuss for complaining at all, nervous that she'd keep digressing, relieved to not be alone, happy to have support, or a gazillion other feelings.

and it made me feel all of them at once! wow.

but...i'm glad we went.

we saw more cool strollers than you could even imagine. good ideas for what we might need in the future for travel, etc. we met people from all over the country, mostly the west. even a super nice lady named joey with a daughter named jade who live right near my family cabin in washington and go fishing at lake merwin. small world.
leah was seen by dr. glaze from the blue bird circle rett center at the baylor college of medicine. imagine your grandpa {the nice, jolly, funny one...} with a super dry sense of humor who is super smart about something you know nothing about. that's dr. glaze. i really liked him. he basically asked us questions we've been asked and given answers to probably 357 times from medical professionals, but i guess he needed a baseline. he assured us leah was quite high functioning and answered some of the questions we had about day-to-day life {yes, it is okay to get mad at her for biting; yes, she can learn to be time-trained when it comes to the potty; yes, she is still cute}.
at one point, leah started her heavy breathing regimen for the day and, without missing a beat, dr. glaze said, "i seem to have that effect on women."

yup, dr. glaze is a keeper.

before we went in, i was feeding leah some apples in the waiting room and paige, the director of family support for the irsf and the mother who started katie's clinic where leah has been seen, told me there was another family she wanted us to meet. they had a little girl just a few months older than leah who had also received their diagnosis last fall. i didn't think much about it because i had seen probably 20 other girls thus far and none of them really reminded me of leah or what she, specifically, was going though.

that's when avery came up and started eating our apples.

i could have died. the girl was cuter than life itself with dimples that just did not stop. she was like a brown-haired leah. her mannerisms were similar and she was equally as mobile {read: did not stop moving}. avery's mom came quickly behind, apologizing for eating our apples. i noticed she was wearing a drape cardigan with a scarf and ruffle shoes. i had that outfit on before we left, but changed last minute. i kept the ruffle shoes. then her husband came around the corner. his name was ryan.

not to be creepy, but i have a feeling it was meant to be. they live locally and we have a play date with them next month. i love all of leah's friends, and i love all of my friends, but i'm excited to have a friend that knows what i'm going though and for leah to have a friend that won't make me sad every time i see them doing something she's not...and would be, if only...

back to the study.

we also saw a dietician who helped me figure out what leah needs more and less of. in a nutshell, she needs carnitine, more vitamin d and she needs to gain some weight...preferably muscle weight. right, like her abs aren't already desirable enough. now she has to go and have better legs and arms than me?

i met another mother of a 21-year-old girl with rs. they only found the gene about 10 years ago. this poor family went undiagnosed until annie was nine. NINE YEARS OLD. i cannot even imagine the daily and nightly torture they went through. the mom was really sweet and offered to help me with ieps and other things that are indefinitely in our future. she also offered some great familial advice. it was nice to see people who have made it that far and have survived. some days i'm just not so sure.

we also met THE katie from katie's clinic. i'd met her mom and her grandma before, but never katie. she's a cutie. and we're so grateful for the clinic she and her family created.

afterward, they had some entertainment from the hospital and katie's clinic staff as well as lunch. i didn't really realize that there were other things going on, so we had to leave before we heard the panel discuss all sorts of topics. next time.overall, it was a great experience and we're excited for the next installment in october.

the new kid in class

today was leah's first day at her new preschool.the kind of preschool where they don't even want the parents there. what!? what am i going to do with 12 hours of free time each week? oh. clean apartments and turn in maintenance requests and schedule vendors and try to rent apartments.

the teachers said she did really well. phew! she looked super cute. she had a new backpack. she tripped as we walked to the classroom, so i documented the cute scuff marks on her white capris.but i'm so sad.

leah couldn't tell me if she had a good day or not. maybe we'll get to the point where she can communicate a lot of things without words {um, that's why she goes to preschool, maren}. but we're not at that point yet. i asked her so many times today how her first day was...and i'll never know. i'll never get to hear her cute little voice tell me, in detail, all the silly things she did. if she liked her new friends, her new teachers, the toys, the books, the snacks, the potty. what they learned about. what made her happy, sad, frustrated, excited.

it was a rough day.

most of the time i'm okay with the fact that she is different. today i wasn't. today i cried. i cried a lot. i was so sad for the simple things we're missing out on because we communicate differently than each other.

i'm sure leah wanted to tell me all about her day. i just don't know how to hear her.

so, we'll keep going to preschool. and kindergarten. and grade school and beyond. and hopefully, one day, she'll be able to tell me how her first day of school was.

the gloves come off...

...or on.

So as to not start a fight here in the Layton household this afternoon, the gloves came on.
It's March. The sun is shining. We're wearing capris and t-shirts. And one of us is wearing gloves.

Bean has been pretty mild lately with the snapping, but today she brought it on. Big time.

And I'm done with it.

Done.

Her fingers stink from being constantly wet. Don't ever smell them. You'll regret it. {I promise we wash them...a lot.}

She has bruises on her arms because they bang against her teeth 24/7. I know someone is going to call Child Services one of these days. It looks awful.

And the snapping. The snapping! She's talented, that's for sure. I know adults who can't even snap and she's a pro. But it's got. to. stop. At least today.

Maybe tomorrow I can handle it.

Maybe.

But today, snappy snapperton, the gloves come on.

oh, sarah

i watched my friend's little girl for a day while my friend had a little weekend getaway with her hubby {and 8 month old baby}. sarah wanted her toenails painted. and then her fingernails painted. once that was done, she told me leah wanted her toenails painted too. amazingly, leah kept her feet still so we could do it. then sarah said leah wanted her fingernails painted. i opted against that due to leah's hand-to-mouth track record. probably not the best idea. but, the toes were a success.she was also super helpful in helping leah enjoy her morning snack.then we played with bubbles.
sarah may have gotten a little carried away when she decided it was a good idea to pour the contents of FOUR bottles of bubbles into my running shoes that were sitting on the porch {yes, the ones i wore in the mud the week before...not all my shoes look that well-used}.she was promptly sent to time out.when asked what her mom would have done had bubbles been dumped into her running shoes, sarah replied, "oh, we don't put bubbles in mommy's shoes." hmmm...

we don't dump them in mine either.

i tried to salvage the shoes. really, i did. but after the tenth wash or so, bubbles were still coming out, so, may they rest in peace.

other than that 10 minutes of naughtiness, we had a great time. we just won't play with bubbles next time.

thank you

i have a lot to be thankful for.

usually, i'm good at letting others know i am thankful. but lately, i've been a bit behind on my correspondence. i just sent out my thank you notes for christmas. that's just plain embarrassing. but, i did it. hopefully better late than never, right? i love sending an actual, physical, paper card. there's nothing like getting mail - especially when it's not a bill or junk or something equally as boring. i love getting them too.

today, i wanted to thank a few others i couldn't send cards to because i don't know who they are - but they need to be thanked.

first: on february 16th, leah and i looked out our front door and saw a HUGE package sitting on the porch, wrapped in backyardigans paper with a card for leah on it. the card, for a three year old's birthday, said, "have fun playing with your mom - doing something you both love. love, friends".

we opened the gift and it was an incredible floor piano. you know the kind they play on the movie big? it was like that, only portable.this gift was given to us by someone who knows it was leah's third birthday, that she loves backyardigans, that we like playing the piano and that she can't use her hands, but can use her feet to run on the keyboard!! we love it. love it!

we've tried to think of who this could be - and have a few guesses, but we just don't know. it's driving my crazy, but i guess it's how they wanted it. they truly are great friends just like the card said.

so thank you.

second: on february 24th, msnbc.com had two advertisements for rett syndrome. if you clicked on the ad, you were sent to a site where you could learn more about this awful monster as well as donate funds for research. if you did donate, you could list that you were making the donation in honor of someone in particular.

i got an email yesterday that told me of three people in particular who listed leah's name on the form. i was so humbled to know that these individuals cared so much for leah that they would give of their resources to fund research to hopefully find a cure for rett syndrome. some of them don't have a lot of spare funds. i have a feeling others donated and didn't mention leah's name in particular.

we really appreciate everyone's love and concern for our family. it doesn't go unnoticed. i've been horrible at expressing that appreciation in the last 6 months, but it truly doesn't go unnoticed.

thank you.

sf ballet: take two

again, a success. well, mostly.

program 4 was tonight's entertainment.

first off, i was the driver, which is fine. i consider myself an okay drive. but we were a bit late and i admit my parking wasn't too suave. sorry, ladies. mary and nicole joined dyan and i in place of katie {who was in hawaii} and cheryl {who was in japan}, so we didn't feel bad for either of them. and, i really like nicole and mary too, so it was a bonus!!

anyway...back to the program. we got there on time. barely. but then the usher sent us to the wrong side of the room to be seated, so by the time we got to the correct side {where dyan was waiting for us}, we just BARELY {and i mean barely...we're talkin' seconds here, folks} missed our chance. the curtains were up and the music started just as we got to the aisle. and this is the ballet. they don't seat you once the music starts. so, we sat on the back row for the first number and then joined dyan on rows 2 and 3 for the next two.

as for my critique:

Petrouchka:petrouchka is the classic tale of a Russian puppet, petrouchka, come to life. the music was great. the costumes were great and i thought the actual dancing was great. this guy had to dance, but like a puppet on strings. it was so unique and i think he did a great job. the other main characters were a ballerina {a doll, i think?} and a moor {very macho}. it was so interesting when they would all dance together to see the same moves performed so differently to fit the characters. it would have been a great idea to read the story beforehand, though, because we were pretty lost the whole time. we read it afterwards and muttered a lot of "oh!"s and "i get it now"s.

diving into the lilacs:
by far my very very favorite. it was more classic ballet, which i like, but it was so unique. the choreography was beautiful. the effects were simple. the costumes were nice and flowy {still a tad tight on the men's part, but, what can you say?}. i can't even say why i loved this one so much. i just did. it was beautiful and wonderful and perfect.

in the middle, somewhat elevated:horrible. awful. horrendous. not worth my time. we should have taken the cue of the orchestra and gone home early. and this one got a standing ovation. the music wasn't live...it wasn't even really music. it was just pounding beats and noise. loud noise. really poundy. over and over. not musical at all. and the dancing. i'm not sure we could call it dancing? to their credit, those guys can do amazing things with their bodies that i could never dream of doing with mine, but...it was awful. i'm a person who likes choreography to match and work together. i felt like each person was doing his own thing and no one was together. and it wouldn't have mattered anyway. they could have been dancing together for the first time that night for all i knew. it was awful. okay, it just wasn't my style. yuck. and then my head hurt.

and there you have it. take two.

no pic of my beautiful friends, i forgot my camera {gasp! maren forgot her camera! i know, right?}.

photo shoot: take THREE

had to document the beginning of leah's third year in style.this was the second field we went to that day. the first one {the one with beautiful yellow flowers blooming ALL throughout} had been mowed down earlier that week, unbenownced to me. boo.

but, these will do.

she's pretty cute, no?

mother's note: i kept getting frustrated that i couldn't get a picture without leah's hand in her mouth or fingers snapping or mouth in a normal shape.
then i stepped back and thought, "but this is leah."
it's still going to take some getting used to, but we love our little leah as-is.
finger snapping and all.