Sunday, January 1, 2012

ctr

dear little leah, 

well, there you go again. growing up before my eyes. i cannot believe it. i have a ctr. you're not a baby. you're not a toddler in nursery. you're not even the littlest one as a sunbeam anymore. you're in the big leagues now. a CTR!!! 

on your first day of class at church, your teachers gave you a lesson on what, exactly, ctr means: choose the right. and they gave you a little ring as a reminder. i remember getting the same little ring when i was just about your age too, miss ribbons. your teachers are wonderful, though, and they weren't sure if they should put the ring on your finger or not because they didn't want it to hurt you. and, with your busy fingers, i think they made the right choice. they they go - choosing the right

but, we came up with a solution {thanks grandma hauley!}: we put it on a chain and you get to wear your ctr ring on a necklace each sunday. 
 

i just love it. and i just love you. i love that you are learning and growing and doing new things every day that surprise me and amaze me and bring me to my knees in gratitude. your days are hard, that's for sure. but you get through with a smile on your face, a gleam in your eye, and now...with a new, big girl ring on your finger neck.
next thing i know you'll just grow up and turn 5 on me. 

love you, miss ribbons. 
love, 
mommy

Friday, December 23, 2011

dear santa, volume 5

dear santa, 
hello from new hampshire! i hope that doesn't throw you off this year. i know you're accustomed to me being a california girl, but we opted for a bit of change this year. {now if you could just send some snow....}

speaking of change, i wanted to update you with how well i've adjusted to all that is going on in my life right now. and i think you'll agree wholeheartedly that i should be placed on your "nice" list this year. 

first: i gained some weight. i know. go me! it takes a lot of time and effort for me to gain those L.B.s with how much i run around, but i did it with a little help from pediasure and a LOT of help from mom, dad and my school teachers. i crossed the 30 pound threshold and am currently hovering right around 32. mom and dad are pleased {and they're hoping it will keep the stern nutritionist from the rett study at bay}. 

second: i'm doing great in school. other than some occasional hitting, i get along with all my peers, my para and my teachers. i work hard in speech, physical and occupational therapies, go to the library each week to pick out a new book, get in lots and lots of steps each day and am practicing so hard on my eye gaze. my teacher just got a new iPad and she's having a great time discovering loads of apps that i love - especially ones that include taylor swift. a highlight of school each day is the music room. i love going there with my para to listen to the music and bang, bang, bang on the drum! apparently it's okay to hit that!?

third: i'm learning to climb stairs on my own. let's be honest. i've mastered it. i can do two or three with zero help and with no one looking and will climb all 15 in my house with no assistance other than the bannister so long as mom or dad is behind me. 

fourth: i learned to give high five. this is pretty much dad's favorite. thing. ever. that and my cuddles. those are pretty good too.

fifth: i've weathered the new england cold without a hitch. boots? no problem. coat? no big deal. mittens? hat? a bazillion layers? bring 'em on. 

sixth: i'm getting ready to be a big sister. although i'm certain i know if it's a brother or sister, i insist upon NOT telling mom or dad. i change my mind every day simply to keep it fun. i've been practicing a lot by holding my baby doll anna...and i really do great {so long as you ignore the occasional whack in the face}.

seventh: i'm surviving seizures. i think this should put me on the nice list no matter what, if you want the truth. i'm on some medication to try to stop them and it sometimes makes me a crazy person, but i really think i do well to manage the rage, sleepiness and dizzyness. and sometimes {so long as i'm safe} it even provides comic relief. and maybe mommy likes the extra naps on those super hard days? 

eighth: i'm still really great in the car. we're talking i was in a car for six days straight and basically didn't make a peep. amazing. i know. i'm also really great in grocery carts. my legs are too long to be up in the front now, so i sit in the basket, holding all of mom's goodies. i'm such a good helper.
ninth: my naps are dwindling, but if i wake up early, on most days i'm okay with chilling in my room for quiet time. for most kids this isn't really a feat. but because i can't do anything to entertain myself by myself {other than tell a few hilarious jokes in my head}, it's usually just me and my thoughts...staring at my toys. that's pretty good, huh?

and tenth and final: i'm making progress on my potty chart. after nearly a year long hiatus, i'm starting to make my mom's sticker collection run dry. i go potty nearly every time i'm given the opportunity and have even done that other thing three times in three weeks. which means we've had three parties in the bathroom so far.

to be fair, i'll quickly brief you on my naughty list: 
  • i hit. a lot. and i don't really listen when others tell me to stop. sometimes it's on purpose. sometimes it's not. um, i'll work on it?
  • when i'm at the table eating, i think it's hilarious to whack the food out of mom and dad's hands when they're nearly to my mouth. that, and i love to swipe everything within arm's reach off the table. 
  • i've been waking up waaaaaaaaaaaaaaaaaaaay too early.
  • after 4+ years of no problems whatsoever, i'm having some separation anxiety. but only at home. and only when mom or dad leaves the room. i know they'll be right back. they even tell me where they're going. but the second they're out of sight, i completely lose it. mom says this has gotta stop. we'll see...
  • you'd think there would be more...but my mind is drawing a blank. see? good outweighs bad by more than double. woot woot! 
also, i know i didn't get the chance to see you in person this year, so i decided to dress up like you instead. i like you that much. but if you're wondering, i'd really love that rapunzel doll that we saw at the disney store in new york city last month. it was basically amazing and i can't stop thinking about it. 
thanks mr. claus. 

sincerely, 
leah layton, age 4


Tuesday, December 13, 2011

l is for leah

dear little leah, 

you are so lucky to have had fantastic friends throughout your 4.5 years. truly, incredibly fantastic. i've written about some of them before (here, here and here...there are plenty more...). but today i got a little message from the mom of one of your california friends, miss sydney. sydney is in school just like you and she is working on learning her alphabet. today, her homework assignment was to draw a picture of something that starts with L. 

there are Lots of things that start with the letter L, but do you know what she chose?

LEAH. 

yup. of all the L words in the entire world, she chose to draw a picture of you. (and your pigtails.) and it made me smile. 

i'm so happy that no matter where we Live, you can know you have wonderful friends who Love you and think about you. 

i Love you, Little Leah Layton (those all start with L!)

Love, 
mommy

Sunday, December 11, 2011

osh kosh

dear little leah, 

today you made me happy. today daddy helped you get dressed for church and do you know what you two chose? the osh kosh jumper that i wore when i was a little girl. and it just made me happy. oh how i loved that jumper, miss leah. i loved it so much i wore it on my first day of kindergarten and in my kindergarten school pictures {yes, i wore it when i was six, not four, but let's not talk about how short i was}. 
 {leah in 2011 and mommy 1987}

and i just hope you love it too. props to daddy for getting you dressed and doing your hair {ribbons and all} so beautifully for church. not so many props to seizures for making you go home from church early so some people didn't have a chance to see you in all your osh kosh glory.

i sure love you, little leah. and i love little moments like this. moments i dreamed about sharing with my little girl that are finally coming true. 

love you. 
love, 
mommy

p.s. are you jealous of my scrunched socks and white tennis shoes? i promise they were cool.

Tuesday, November 22, 2011

dolly wolly

Dear Little Leah,

My favorite thing in the whole wide world is to come home from school and snuggle with you on the couch. You always seem to be so content sitting in my arms.

Last night, after dinner, while you and I were watching a movie on the couch, I gently set your dolly in your little arms. You were so still. Your arms and hands didn’t move a bit as you cradled your dolly. You kept looking down, staring into your doll’s face. It was cute beyond belief!

Even though you can’t walk over and pick up your dolly yourself, I figured that you still would like to hold her. Boy did you ever like it! Sometimes I forget that just because you can’t physically play with a toy by yourself that it doesn’t mean that you don’t want to play with toys at all. I love helping you with your toys. But you know what I love even more? Seeing that adorable, squinty smile on your precious little face.

I love you little girl!

Daddy

Monday, November 14, 2011

hockey daughter

dear little leah, 
you are, what i guess we can call, a hockey daughter. your dad plays hockey. he just started. he's no professional, but he's actually not all that bad. even i was surprised.

sometimes he falls. 

sometimes he doesn't. {sometimes he even scores!}

and you love to get dressed in your jammies and mittens and watch him play {even if the games are really late}... 

...and then patiently wait for him to change into his street clothes so we can drive him home. 

he's already talking about getting you some ice skates and taking you to a rink this winter. just thought i'd warn you. 

love you, little leah. 
love, 
mommy

retakes

dear little leah, 
we got your school pictures back last week. and it's a no go. they should have turned out okay. there was definitely potential. you looked like this, after all. 

but the end result was nowhere as successful as 2010-2011. you kind of set the bar high. so, retakes it is. sorry miss ribbons. but perhaps you should try smiling next time.

love you.
love, 
mommy.

Monday, October 31, 2011

halloween take 5

dear little leah rapunzel,
i dare say you and your long, blonde locks stole the show this year. we {you} chose your costume clear back in july and it was still what you wanted by halloween! thanks for sticking to your guns. i had a great time being the parent helper in your classroom today. thanks for letting me come. 

dad says thanks for letting him go trick or treating with you. i know he enjoyed it, but i'm beginning to think he might have had some ulterior motives - or do you really like dots that much? just curious. 

i love you miss ribbons rapunzel. to the moon and back. 
love, 
mommy



Friday, October 21, 2011

blue sky girl...

dear little leah, 

lots to catch up on, i know. i have some stories about school, backbacks, new york city and...seizures. yup. lots of them. 

for now, just wanted to leave you with a quick update about one super cool thing we participated in for rett syndrome awareness month: blue sky girls. it's a new event, and one that was occuring all at locations around the world at the very same time. for us, it was in boston on the steps of the harvard medical  building. rather than focusing on what you can't do and some of the awful and horrific things rett syndrome has done to your life, this event focused on the good. your strength. your perseverance. your hard work. your stamina. and your giggles. 

one by one, about thirty rett girls {and one rett boy!} walked - or were carried - up the stairs with their families by their side. daddy and i each took one of your sweet little hands and together we all climbed all those stairs. you didn't need our help to carry you one bit. and you giggled the entire time. you made lots of other people giggle because you were laughing so much. i kind of liked it.

it was so great to be surrounded by so many other families who have also been striving to show the world what you amazing girls {and boy!} can do. 

plus, everyone was wearing PURPLE {your fav}, you got a PURPLE balloon and a PURPLE flower and we even painted your toenails PURPLE. does it get better than that!? 

it does. 

after we climbed, we walked over to children's hospital boston for a lunch and we got to meet lots of the new doctors and others you will be working with for the next few years.

it was a good day, miss ribbons. a very good day. thanks for working so hard. and thanks for making us laugh. 

i love you, little leah. 
love, 
mommy

Saturday, October 1, 2011

awareness

dear little leah,
well, it's october again. our third now being aware of rett syndrome. strangely enough, the month we first became aware of rett syndrome is actually rett syndrome awareness month! we have a few things planned for a little later in the month {which may or may not include painting our toenails purple}, but for now, enjoy this little commercial from clint black. what a guy.


i love you, little leah. 
love, 
mommy