no. 10: cornered

dear little leah, 

you have a thing for corners. you always have. when you were a brand new baby, i'd find you all curled up in the very top corner of your crib. you'd shimmied out of your blanket {leaving it in a perfect cocoon in the middle of the mattress} and then out of your jammies {leaving them in a perfect cocoon just above your hollow blanket} and you in the corner. 

when you were a little bigger, you used to roll, scoot and crawl into corners in our house - most commonly to the side of the couch behind your toys or to the side of your dresser trapped between your mirror, crib and garbage can. 

it's kind of weird. well, it used to be weird...until i figured out why you love them so.

i guess backing yourself into a corner helps you find your place in space. sometimes rett syndrome leaves you feeling a little vulnerable in this big, wide world. when you can feel things close around you, you feel a bit safer and can function a little better. 

i have to admit, the corner thing is pretty cute. you find corners at stores {my favorites so far being michael's crafts in seriously the only recess in the wall in the entire store and underneath the suits in the suit rack at macy's a few weeks ago}. you find corners at home {behind the kitchen table, next to the big ugly orange chair, in your closet, in my closet, next to the bookcase...you get the idea}. and you're actually very adept at wiggling yourself into those corners.

if you ever sit down in the middle of the room, you'll get this sweet little grin on your face and shimmy/butt bounce yourself backward until your back hits something and you can finally rest in...a corner. 

i'm glad you've figured out your safe place, leah beah. i'm so happy you're finding ways to rest and regulate your body. you just never stop working and trying. 

i love you so. 

love, 

mommy

no. 9: one step at a time

dear little leah, 

today i'm remembering a time when you first climbed the stairs. we were at the mcphie's house and you had been trying for months. then one day, you just did it. it look you a long time. and we could all tell it was hard work. but you did it! every single person in the room cheered out loud for you - including you. over the next few months, you got really good at climbing stairs. eventually you started to stand and go up and down with adult assistance. 

then that went away. 

oh leah, that made me so sad when you stopped climbing stairs! it was like this whole world just slammed a door in your face blocking you from so many opportunities. but slowly {very, very slowly} you are gaining this skill back. 

the other day we were at the katz's house and i realized you were nowhere in sight - which meant you were no longer on their main floor. i peered up the stairs and there you were, grinning from ear to ear on the second section of their stairs. you climbed in record time. you carefully scooted down each stair on your bottom. you stood up on almost every stair and wanted to walk, but knew you couldn't do it safely. so, you sat back down and scooted. on the last stair, you stood up and got this look in your eye {that i imagine meant something like, "oh yah rett syndrome? watch THIS!"} and you stepped off. i was just far enough away from you that i couldn't catch you and my heart skipped a beat. and then you landed. on both feet. like you'd been stepping up and down stairs like a pro for years. 

and just this week you've started going in and out of our house off a small ledge to a small porch and then another small ledge to the asphalt. usually you either need my help or you get down on your hands and knees to crawl in and out. but there have been multiple times this week where you've just stepped out {or in} like it was nobody's business. 

i know this isn't easy for you. i can sense the fear in your little body as you make what is, for you, a giant leap - not knowing if your little body will cooperate. but these small steps {no pun intended} show me just how amazing you are. you are such a hard worker, leah. you have so much drive and so much desire to learn and grow and accomplish new things each day. yes, some things are scary. yes, some things are hard. but {like rachel said} you can do hard things! you CAN! you might have to try them out a few thousand times before you can do them yourself, but you stick with it and you figure it out. your legs and feet are getting stronger and more steady and all your hard work is paying off {and will continue to pay off!}.

i'm so proud of you, little leah. i hope you're proud of yourself too. keep up the good work. you'll be climbing those stairs on your feet in no time. 

i'll eat you up, i love you so. 

love, 

mommy

no. 8: happy birthday to me

dear little leah,

today is my birthday. um, i like my birthday. it's not really a secret. but thanks for playing along. you were super sweet and cuddly this morning and you helped me make yummy scone dough. then when i picked you up from school, you said {with your expressive eyes, of course}, "mom. i'd really hate for you to have to come home and prepare my lunch on your birthday. that's a lot of work. plus, i'm usually messy, so then you'd have to clean the floor and the counter. and then you'd have to do the dishes. so, to save you from all that effort on this, your special day, i'd like to take you out to eat."

well now, if i didn't raise a kind daughter, i'm not sure who did! that was so thoughtful of you, miss leah! so off to lunch we went...to subway. because we like it and your daddy doesn't, so we always have to eat there when he's not with us. we both got flat bread sandwiches, which, might i add, are PERFECT because they are softer and flatter, so your little mouth fits around them and bites into them relatively nicely! hooray!

you are currently sleeping soundly in your bed {i think} and have been doing so for about an hour and a half. hooray!

later, you'll be my best buddy and help me clean the house {um, didn't your eyes tell me you wanted to do that too?}. we'll wipe all of your little handprints off the mirrors and tables and the television set so the house is sparkling for my party tonight. and, since you've been such a lovely girl, i'll let you stay up to eat a scone and a root beer float. how's that for a sweet deal? see, my birthday isn't all that bad.

i love you bunches. thanks for keeping the balloons company in the backseat today. they would have been mighty lonely without you.

love,
mommy

p.s. tell daddy all i want for my birthday is a card from you. seriously. not like last year where i said that and i still haven't received a card for my 28th year. you tell him. he'll help you. and if he does, maybe he'll escape being in trouble all year? it's worth a shot.

no. 7: jackers

dear little leah, 

when your daddy was graduating from college, he received six job offers. six. that's a lot. we were grateful, but it was also a lot of decision making on our part. sometimes it's just easier when a decision is made for you - like getting one job offer, you know? i won't complain. but it was a lot to think about. two of the offers were in the bay area. one right in the city and one in the suburbs. after some quick research about the area, we crossed both jobs off our list {$2,000 for rent? you've got to be kidding me}. we researched the other options and i thought we had come to a decision. 

and then, all of a sudden, we were moving to the bay area. i'm still not sure how it happened. neither of us can remember. we both remember crossing this job off our list and yet somehow, here we are. 

over the course of the last nearly four years, we've thought a lot about our decision {or lack thereof?} and we feel we were truly guided to this area. lots of these reasons we feel have direct connections to you having rett syndrome. others don't.

one of those "others" is named jackers. 

isn't he cute? 

don't get too excited. he's your cousin. well, second cousin. i am cousins with jack's daddy. jack and his parents moved here about 6 months after you were born. but you know something cool? you and jack are twinners! you were born on the SAME day, about 20 minutes apart. you in california, jackers in chicago. jack's mom was overdue, you came early and then, after jack's dad graduated from northwestern {he's a smarty pants}, he got a job here. the rest is history. 

you've spent a lot of time with jack. and i know it might sound weird, but you guys sometimes act like twins. it's like you knew each other before you both got here and you just get each other. 

i've had hard moments with nearly every child you've become friends with at some point or another - with their speech, their interests, their behavior, their development. mostly i just wish you were doing what they are doing or i have a moment where i despise them a bit. i know, i'm a horrible person. i'm working on it. but...i've never ever ever had a thought like that with jackers. kind of weird, huh? this kid is smart and he does a lot of things. and he does them all right on time, it seems. and it's never bothered me. 

jack is great to play with you and include you in different activities. he loves waking up from his nap and realizing you're there to play. you two watched for the garbage man for a good portion of your second years. and you were so cute together. 

jack understands more every day that you're a little bit different than his other friends, but he doesn't seem to mind. you're still just leah beah to him. 

and i'm so grateful for that. 

i'm so grateful for jackers. and for his mom and dad. 

i really feel we were guided to this area so we could spend some time together and so we could have some family support close by. i really believe jack was prepared before he came to this earth to be your special protector. he watches out for you. i'm often brought to tears just thinking about their sweet little family {who just welcomed baby lauren...and you looooooooooooove her!}. and i will forever be grateful for little jackers.

love you, little leah. and i love that jackers too.

love, 

mommy

no. 6: doggie doggie doggie doggie

dear little leah, 

when you were little{r}, and we'd take daddy to work in the morning, each time we got off the freeway and onto the street where he works, we'd here a tiny "doggie doggie doggie doggie" coming from the back seat. daddy and i could NOT for the lives of us figure out why you always said "doggie" right as we got off the freeway. we searched and searched to figure out what you might be looking at or thinking about at that point every single day. 

the "doggie doggies" continued until you could no longer speak. and it wasn't until then - sometime last fall - that i finally saw what you had been seeing: a billboard, off to the left, behind some buildings and trees. and it had a cat and...a dog...right smack in the middle. i couldn't believe my eyes. 

"doggie doggie!" i exclaimed to your dad. he was so confused. i pointed to the sign and we both finally understood. we finally saw what you had been seeing all along. it was so obvious. why had we not noticed it before? 

i've had similar feelings all along this rett syndrome road, leah. it's like you're trying to show us, to tell us, to explain to us and we just. don't. see. then all of a sudden, it clicks. i get it. i finally understand what you want or what hurts or what you might need. 

i haven't figured everything out yet. and we've still got a long road ahead of us, but let's hope for more doggie doggie days soon. 

i love you to the moon and back. 

love, 

mommy

p.s. when they cure rett syndrome and you can talk again, will you promise to say "doggie doggie doggie doggie" for me? and maybe throw an "opatus" in there too?

{...}

no. 5: creative sleeping

dear little leah, 

today your daddy and i were talking about your sleeping habits. actually, we were remembering the habit you had last fall of not sleeping at all. the weather's getting cooler again and we decided to dress you in your bone jammies tonight - long pants and long sleeves. daddy mentioned those jammies reminded him of driving you around at unmentionable times of the night so our neighbors wouldn't hear you scream and you'd possibly fall asleep in the car. we got to know the freeways and backroads of our city and the cities surrounding us quite well during those months. 

after your diagnosis, we found some medication that helped to calm your body down and keep you asleep after you had initially dozed off. {insert angels singing praises right here.} this stuff was amazing. i knew i didn't want you to be medicated unnecessarily, but i have to admit, i've been afraid to take you off the medication for fear of not sleeping all over again. those were dark times in the layton household. 

after the study this week, dr. glaze suggested a weaning schedule that would help us to know if you are able to sleep on your own now. so we're giving it a shot. and you know what? so far it's working! yippee!! you, my little friend, are calming down and staying calm all throughout the night...all by yourself. it's a christmas miracle!

daddy and i come to check on you every night to make sure you're safe and sound in your bed. and multiple nights we end up giggling because of where you end up. you're so stealthy sometimes we don't even know you're not in your bed! once you were right in front of the door and we whacked you on our way in. whoops! sorry about that. 

i much prefer your creative sleeping to your lack of sleeping altogether. we're much happier and much nicer to one another that way. i'm so glad you've been able to figure out a way to calm your little body and get the rest you need to run, run, run through your days. 

i love you, little leah. and i love you bunches and bunches when you're sleeping. 

love, 

mommy

no. 4: you breath holder, you

dear little leah, 

you are a champion breath holder. really, truly awesome at it. i'd consider giving you a prize for this honor if it didn't scare the living daylights out of me. luckily, you've never turned blue or passed out {and i know other rett girls do, so i'm counting my blessings and crossing my fingers and toes...}, but you're still pretty good at it. 

it really comes out of nowhere and lasts for various amounts of time. after you finish, you usually get a little wobbly and then go back to doing whatever it is you were doing before your body decided to shut off the oxygen to your brain. 

i've calmed down a lot during these episodes. i used to get really freaked out. now, i just do my best to give you a hug and let you know i'm there to help you and hold you until the breathing returns. 

i really worry you'll do this in your sleep one day and just never wake up, but i'm assured your breathing while sleeping is normal. ugh. going on faith for that one...

but then today...toDAY...i saw the greatest, bestest, most wonderfullest article, leah. it talked about some researchers who figured out why you lovely little ladies hold your breath and hopefully how to stop it. they've done it in mice AND they've done it with medication that has already been approved and is being used to treat other illnesses. so hopefully we can help you really soon! wouldn't that be great? i know you don't like to hold your breath. i know it's not your choice. and it's probably scarier for you than it is for me. 

so, here's to being one step closer, my friend. 

love you bunches. 

love, 

mommy

p.s. the videos i'm trying to upload of you holding your breath are failing right now. i'll keep trying...

image: {...}

no. 3: a good weekend

dear little leah,

we just got home from an amazing weekend filled with amazing rett families - pretty appropriate for rett syndrome awareness month, huh?

on saturday, daddy and i drove you to oakland to participate in our second rett study. we met with dr. glaze and his wonderful nurse, judy, again. you really like them. we also met with dr. motil and you got me in trouble. you're too darn skinny. i know i tell you it's cute, but if you get much skinnier they might have to put a feeding tube in you. and i promise you real food tastes better. so when i fill your plate full of butter and cheese for the next six months, eat up, okay? we met with dr. killian and he took a look at your bone structure. you're good to go there. although, i learned i have hyperlaxity and 99.9% of people with hyperlaxity can't run more than a mile or two at a time usually. i've beat the odds, apparently? i'll definitely be looking into that...

after daddy had to leave, you and i had a great time at the hotel {see picture above}. your new friend claire even let you use her eye-gaze computer and you started to catch on. it was awesome! you kept saying you didn't feel good. i kept saying i didn't believe you because you were so giggly. then you pooped 3 times. now i believe you. sorry about that.

you loved breakfast this morning. all 10 slices of watermelon and more. and luckily, they didn't throw my invisalign away after i left it on my plate. whoops! flashbacks of third grade...

and the strollathon was great! we met so many fun new friends and you even found yourself a new fan club. some of our good friends came to support you and walk with us and it was so wonderful...especially our matching team leah bean shirts. love them.

i was reminded this weekend how lucky i am to have you. in the world of rett syndrome, we're pretty lucky and it's good to be reminded of that. you are one happy, giggly, beautiful, sweet little girl and i had a great weekend spending time with just you.

love, love, love you. love,

mommy

no. 2: a reader

dear little leah,

ever since i was a little girl, i have loved reading. i'm pretty sure my eyes are as bad as they are because i spent countless nights reading for hours after my bedtime. i would read for hours until my mom would sometimes tell me to turn the lights out. even then, i would sometimes read under my covers. i still love to read. there are always multiple books on my nightstand begging for my time and attention.

you used to love to read as well. actually, you still love to read, you just can't do it by yourself anymore. i have to admit this is one of the hardest things for me to deal with about rett syndrome! you used to spend hours every day flipping through the pages of your favorite books. some days you were fast and careless - and many books lost their lives in your hands. other days you were so meticulous. you knew to turn the book the right side up and you flipped each page one by one, making sure with steady fingers that you hadn't doubled up and turned two on accident. i used to always find you sitting in a massive pile of all of your books. every morning, you'd tear them off the shelves, settle into position and read, read, read.

you let us read to you for hours too. you used to finish phrases from your favorite books like where the wild things are {"and it was still...HOT!" or "and Max said...NO!"} and sneetches {they'd hike right on past them without even...TALKING!"}. and by finish, i mean shout.

sometimes it makes me so sad that you can't just go into your room, grab your favorite book off the shelf and get lost in it. you can't even tell me you want to go read. i usually have to offer it as an option and then give you choices between certain books.

oh, little leah, how i wish those hands would just let you read. rub the pages of the books between your chubby little fingers. point to the moon or the dog or the ball on the page. one day, little leah. one day, you'll read without assistance again. and when that day comes, i promise not to tell you to turn the lights out. or, if i do, just make sure you keep a flashlight in your nightstand drawer. it might come in handy.

i'll eat you up i love you so, little leah.
love,
mommy

the first...

dear little leah, 

october is rett syndrome awareness month. we talk to you all the time about rett syndrome. you know that is what makes your body not work as you wish it would and causes you all sorts of grief. you also know that daddy and i are doing our best to help you cope and to gather resources to help find a cure. 

i've been thinking a lot about you and rett syndrome today and decided i wanted to record at least one thought every day this month for you. it can be a thought about rett syndrome, a memory i have, a wish in my heart, a struggle, a triumph. anything at all. but just one thought a day. 

today i chose something i love about you: your sense of humor. 

you are one funny girl, that is for sure. you have always been a big tease and you laugh at other people's misfortune. someone bumps into something? pretty darn funny. if someone falls? downright hilarious. your giggle is contagious {and quite popular - everyone loves it!} and it helps remind me to find the humor in even the worst situations. you are quick to forgive and quick to offer a smile and laugh no matter the situation.

this picture just epitomizes your sense of humor to me. you had been picking your nose, but looked at me because i think you thought i would tell you to stop. when i grabbed for my camera instead, you went straight for the double pick with a smile on your face, a glimmer in your eye and a giggle to boot. and yes, it made me giggle. and no, i didn't make you stop. 

that sense of humor comes in handy, huh?

i love you, little leah. thanks for making me laugh. 

love, 

mommy