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

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

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.

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

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.

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

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

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

there are play dates in new hampshire too

dear little leah, 

today you had your first new hampshire play date. i told you you'd find friends! dad and i were least worried about that happening for you. it's us we're concerned about. but you, YOU make friends like it's nobody's business. and miss c is a great one. she gives you hugs every single time she sees you at church. and you two had a great time together. you dressed up and danced and devoured some cookie dough. 

i think we'll invite her over again.

love you, miss ribbons. thanks for being so like-able. 

love, 

mommy

rachel, write here

dear little leah, 

a while back, my friend rachel asked me to write about YOU. and about how i rejoice in YOU. so i did. you can check it out here. 

love you, little leah. you sure do make me rejoice. 

love, 

mommy

seize the day

dear little leah, 

i'm just going to go right out and say it: you scared the crap out of me today. and last tuesday. 

i think you may have had your first seizures and i really don't like it. really really. 

last tuesday morning, you were still kind of waking up and were lying in my bed. you went stiff as a board, your eyes kind of rolled back, but mostly just glazed over with an eerie, vacant look and there you lay for about a minute. 

i was calling your name, trying everything i could think of to bring you back to me. eventually, you just did it on your own timing. and then, right after you "came to," you did this strange movement with your mouth, for about 30 seconds, as if you were tasting something in your mouth over and over, kind of small licks with your tongue. 

after that, you were fine all day. phew. 

then this morning, it was almost a repeat. you were sitting in my bed this time when your body went stiff and fell backward - luckily, onto dad's pillow. you had the same look in your eyes and were completely glazed over with your mouth open for at least 30 seconds. i know that doesn't seem like a long time, but it felt like an eternity in the moment. this morning when you came back to us, you did some intense teeth grinding for about 30 seconds and then you were just fine. 

your teachers said you had a great day - you participated, said "moo" at the cow puppet, banged on the drums {3 beats each time, just like the music teacher}, checked out a book at the library, went on a walk that included stairs and splashed in the water tub. 

in the car on the way home, you got a little teary, so i figured we could cuddle on the couch. during our cuddle, you lost all tone and did that creepy eyes-roll-back-mouth-opens-and-drool-comes-out thing you often do {not a seizure}, and then you were fine. 

about two hours later, i had to send an email, so i came into the computer room and you followed me. i turned around and my reflexes were about 3 milliseconds too late because you went stiff as a board and fell, flat onto the unpadded carpet {yah, i know, it stinks that our carpet has no padding!}. you whacked your head good. usually when this happens you roll into it to soften the blow, but not this time. this time you were straight as a board. but you came right to...i scooped you up and the crocodile tears started flowing. so i didn't leave your side for the rest of the evening.

if it weren't for the cuddles, i would have completely hated today altogether. let's not seize these kind of days anymore, huh? they make me nervous for the days ahead. although, next time i hope i'll have the presence of mind to whip out the video camera so i can tape it for a medical professional. {i did call them today, by the way. and we're getting you all set up.}

love you. love, 

mommy

primary program

dear little leah, 

you did a great job in your first-ever primary program. let's be honest. i was probably more excited for it than you! you did an exceptional job at sitting when the others were standing and standing when the others were sitting. luckily, being 40 inches tall, not many people could tell. 

plus, you looked ridiculously cute.

way to go, miss ribbons. keep up the good work. 

love, 

mommy

ice cream sammich

dear little leah, 

today you tasted your very first ice cream sandwich. 

i think you liked it. 

i dare say it was the first smile i saw all day. i guess dad's tuition is paying off after all.

love you. 

love, 

mommy

all because of a bucket swing?

dear little leah, 

today we went to the park. we do that sometimes. 

we went with friends and we were all having a run-around-and-be-crazy time. 

sometimes people notice that you move differently than other kids. sometimes they notice you can't play on the structures without assistance. and sometimes they notice that you swing in the bucket swings. but they usually don't ever make any comments or ask any questions. 

and they NEVER come up to me and say, "excuse me. i hope this is okay that i'm asking, but...does your daughter have rett syndrome?"

until today. 

my jaw dropped to the ground and when i picked it up, a smile spread across my face before i could respond, "yes! she does! you've heard of rett syndrome?"

we proceeded to have a great conversation about a little girl she used to work with one-on-one in an early education program run through the state of new hampshire. the girl happens to be that girl that we've heard about multiple times, but can't ever get any information about because of privacy laws. so...we gave our new friend our contact info and told her to pass it along. apparently this little girl is three and our new friend said you are both very similar! she walks like you...and stops like you. and she fusses with her fingers like you. 

i really hope we get to meet this little girl soon. you got pretty excited when i told you about her. and i think you guys will get along smashingly. 

all in all, i'd call that a successful day at the park. maybe we should go more often. 

love you miss ribbons, 

love, 

mommy

p.s. this new friend also told us how much working with this girl has helped her in her own life. she now has a little girl of her own and she said learning about and working with a girl with rett syndrome has helped her to be more patient, to take time to learn about others and to be more grateful overall. i can't help but think you might have had that same effect on others you have worked with.

while you were sleeping

 {you, comfortably tangled in your sheets, july 2011 -  

your bed is way cooler now}

dear little leah, 

our church here starts at 1:00pm. i'll just come right out and say it: it's about my least favorite time for church. ever. i never seem to be "productive" in the morning, even with spiritual things, so we end up wasting a lot of time. it's a really long time to lounge around and avoid the kitchen on fast sundays like today. and it is especially difficult with your naps. 

first off. i'm super glad you still take naps. 

they're pretty short, but school and other activities where you work so hard seem to wear you out enough to need just a little bit of extra shut eye during the day. not to mention that whole not-being-able-to-calm-your-own-body-down thing. if you wake up too early in the morning and are too quiet for us to hear, you'd be lucky to put yourself back to sleep {case in point: last night when i heard you crying and found you sitting up underneath your little table, squished behind the chairs and half sitting on your roller skates}. 

so this morning, i went in to get you as soon as i first heard you babble {love those babbles, by the way...}. we lazed around for a little bit and you ate a good breakfast. and then around 10:30, i laid with you in bed, calming your body down enough for you to doze off and dream. 

i love watching you sleep. i've always loved it. but now i really love it. and i never take it for granted. i still vividly remember a time when you didn't sleep at all. and it wasn't just a colicky baby not sleeping. that i can handle. this was so much worse.

when you sleep, everything is right with the world. it's almost as if all those genes in your body are perfectly un-mutated and you don't have that dreaded syndrome. your breathing is steady and sure {no hyperventilating or breath holding for you}, your fingers are still and your teeth don't sound like saws. 

you seem truly at peace. the way i wish you could be all day long. ironically, the reason you nap is most likely because you can't be like that all day long.

i hope you feel as peaceful as you look, miss leah. i hope you can really soak in that restfulness if only to give you energy to deal with what you're dealt during the day. only just make sure we keep the energy at bay during church today. because i didn't get a nap this morning {at least not a restful one}.

i love you, beah. to the moon and back. 

love, 

mommy

an old letter

dear little leah, 

as i was cleaning out before we moved, i stumbled upon a piece of scrap paper i used to scribble some thoughts last summer. and, as i still have some of these thoughts every day {multiple times every day}, it was still applicable and i should record it here. the note is unfinished, but i still like the message. 

{summer 2010}

dear little leah, 

today while you were at school, i went to the park. a first for me without you in tow. i was watching two of your sweet friends while their mom volunteered at their big sister's school. i was fascinated at the way these two girls {ages 2 and 4} were able to move and control their bodies. 

twisting, bending, hanging, swinging, climbing, building, sliding, flinging. 

i had a glimpse of understanding as to why most moms have to take their kids to the park at least once a day.

the imagination and creative play ran rampant. the tricks and twirls were endless. if the girls wanted to climb, they climbed. if they wanted to swing, they swung. if they wanted to build, pretend or slide, they did so. 

they didn't need any help from me. their bodies just worked. and it made me oh so sad for you leah. 

i'm sorry if i make you climb when you want to swing or slide when you want to build. it's up to me. and i'm...

that's all. i know. totally unfinished. but i didn't want to continue the letter as i don't know what i would have said then. i know what i would say now, though. i'd say that i'm not you. i don't know your silly thoughts or your silent dreams. i don't know what you truly enjoy or what you utterly despise. you're a really good sport and you just kind of go with the flow. for the most part, you seem so comfortable in your own skin and i'm really really grateful for that. but i still long for you to be able to do whatever it is you want to do. to say whatever it is you want to say. to be whoever it is you want to be. i'll keep working on it miss leah. i'll keep working.

i love you. to the moon and back. 

love, 

mommy

what. a. day.

dear little leah, 

what a day. what a two-days, actually. yesterday i basically threw in the towel. i was done, done, done being a mom. i was done being a wife. i was done being me. i was frustrated with nearly every aspect of my life and just felt the walls crumbling down all around me. it was a bad day from start to finish. just ask dad. 

i've tried ever so hard to help you out on the potty. and yesterday, after we sat there, two different times, for 20-30 minutes each and you told me you were done, we pulled those pull ups over your tiny little bum cheeks and then you pooped. yup. twice. you knew. you knew you weren't done, but you knew i'd trust you when you stared at me straight on with those beautiful blues when i asked if you were. and then you knew you'd go as soon as you got off. 

i know you don't have control over most aspects of your life. and my thought is that this is you taking control over something. and so i threw in the towel.

that was just one of about a bazillion things that went wrong. 

and then i got an email from grandma h. one of those emails you don't want to get when you're in a bad mood because she said all the right things to make me feel better about myself and the situation. but i still wanted to be in a bad mood. i wanted to pout. the email did make me feel a teency bit better. but i still chose to pout. don't hate me. sometimes i just need to pout.

today i met with the directors and teachers at your new school {another post for another day}. it went great. fabulous. fantastic. couldn't have asked for a better meeting and i'm actually excited for your iep next week. i know. whoa mom. calm down. but i am! it's going to be a good year. 

but then tonight i held tight to a screaming, kicking, hitting, flailing, wailing, teeth-gnashing leah and had no idea what was wrong. just another kick while i was down. a little salt in the wound. knowing that anything could have been wrong - tummy ache, headache, bad day, hair in your face, too hot, too cold, whatever - and i'll never know. i have no way to get inside your little mind and hear those thoughts that i'm sure are bursting at the seams to come out. 

i'm just done with today. i hope that's okay. we'll try again tomorrow. 

love, 

a-not-so-good-mommy

in the spotlight - tyler style

dear little leah, 

today in church, daddy and i were asked to give a spotlight on YOU. you know, your favorite color {purple}, movie {kung fu panda} and things {babies, people, school, etc.}. we were also told to tell the other kids a little bit about rett syndrome - how it makes you different from them and how you are still the same. 

so, naturally, i asked my lovely friends to tell me how they explained rett syndrome to their kids. kind of ironic that i'm the one that is supposed to explain everything and i'm the one who has no idea how to do it!

a few of them emailed me with some great tips and questions their kids had had at some point. but tyler's mommy's email made me cry. a happy cry this time. but i cried when i read it and i cried when i told others about what he said. and since there's no way i can sum it up as well as she wrote it, i'll just cut and paste:

"When Leah was born, her body was working just great.  But as she got older, suddenly, her body wasn't working just right.  

"One thing that stopped working was Leah's mouth.  When she was a baby she could say mama and dada, but suddenly her mouth didn't know how to work.  She would want to say "I am hungry!", but her mouth didn't know how and so she could say it.  Wouldn't that be so hard??!!  But Leah is super smart so do you know what she does?  When she wants something, she uses her eyes!!  If Leah wants a drink of water, she will look right at it.

"Or if she wants a bite of apple, she will look right at it.  But if you ask her if she wants a bite of applesauce and she looks away...that means she doesn't want it!!

"Other things that stopped working right were Leah's arms.  Leah loves to say hi to her friends, but her little arms just don't know how.  They wiggle around all the time but they don't know how to sit still in her lap or pick up a toy or hold a cookie.  Wouldn't that be so hard?  But little Leah is so smart that she figured out a way to say hi.  Sometimes Leah walks right up to you and puts her hand on you!!  That is how Leah says hi!  It might seem like she is hitting...but she really isn't.  Her body didn't mean to hit you she was just trying to say hi.
 

"In Primary class the one time I was there, after we talked about how Leah's body was different, I said a few things that were the same and I think the kids really loved it.  They each picked something that looked the same (i.e. long hair like Ali Hepworth or stuff like that). They were so cute.  We talked about how Leah smiles like us and giggles like us.  We talked about how she sometimes feels happy like us and other times when she is sad and cries.  (My favorite part was at the end when Ty announced to everyone that it was ok that Leah's body doesn't work now because when she gets resurrected her body will work perfect!  I think that Karen and I both started crying then :)"

And then, after that incredible email, she sent me this one:

"Ty just came in and after I told him what I was doing he said he wanted to say this:

'Leah needs extra love from everyone.  She will cry if she needs something and then you just ask "Beah do you want water or a snack??"

"Leah loves to have me take care of her and to wear my raccoon hat.  Heavenly Father is so sad if we are mean to Leah.'"

oh leah, i love that little ty for reminding me about the simple yet important things in a way that seems much too eloquent for such a small boy. and then i'm reminded that friends like ty were placed in your life for these very purposes. 

love you, miss ribbons. 

love, 

mommy

"i love you" this much!

dear little leah, 

we made it to new hampshire! that was a long week and you, my friend, were ridiculously good. no four year old should behave as well as you behaved when stuck in a car for 53+ hours in one week, and yet you did. amazing. 

before i give a real update on your life the past two weeks, i wanted to jot down something you did yesterday that basically melted my heart. you see, when you stopped speaking, i got sad. really sad. and one of the reasons i got so sad is because, although you had had lots and lots of words that i knew i'd never hear again, there was one thing you hadn't yet learned how to say. so even if i wanted to go back and watch a video or replay this phrase in my mind, i couldn't. that phrase, little leah, was "i love you."

i had lots of people tell me that you loved  me. and deep down i knew you did. but i just wanted to hear it from YOU. i wanted to hear that darling little voice echoing from that squishable face those three coveted words. 

we've been working pretty hard on your eye gaze and you're getting better and better each day. but yesterday, you nearly outdid yourself. we were relaxing on the stairs and i turned to you and said, "leah, do you know how much i love you? i love you sooooooooooooooo much. probably this much {as i reached my arms out as far as they could go.} i love you to the tippies of my fingers. even more. i love you more than this much!"

and then, i asked you, "leah, do you love me just a tiny bit? maybe this much {as i pinched my forefinger and thumb as close together as they could possibly go without touching}?"

as i did, you turned your face away from me. zero eye contact, sir. 

and then i asked, "oh, well, then do you love me thiiiiiiiiiiiiiiiiiis much {as i stretched your arms out as far as they could go}?"

and at that moment, you whipped your head around and looked me square in the eye. i saw the twinkle and i heard the giggle. and you stared and you stared and you stared. 

so i asked again, "so leah, you just love me this much {thumb and finger pinch}?"

you looked away.

"oh," i replied, "so you love me thiiiiiiiiiiiiiiiis much {tippies of fingers stretched to the max}!?"

beautiful blue eyes staring straight into mine. 

oh leah, you have no idea. it was better than hearing the words. i heard them in your very own way. and i crumbled. i do love you thiiiiiiiiiiiiiiiiiiiiiis much and more, sweet leah. that is for sure. 

love, 

mommy

p.s. thanks for showing daddy how much you loved him this morning too.

mama

dear little leah,

there's not much that thrills me more than when i hear your little voice. usually it is in the form of a giggle or squeal. sometimes a cry. but i still love your voice. and this morning, when we heard you stir, dad went upstairs to get you. he brought you down to where i was still in bed and i greeted you with an excited, "hi leah!".

to which you replied, "mama!"

yup. that's my name. and please, feel free to wear it out as much as you'd like. i'll never get tired of it.

i love you little leah, and i love that you're mine.

love,
"mama"

a pillow

dear little leah, 

sunday was a sad day of goodbyes for us. most especially because we all had to say goodbye to your special helper, sister z. you sure love sister z and she seems to truly love you. 

so much, in fact, that she wrote about you on her own blog and made you this beautiful pillow. hand stitched and sewn with care, perfect for your new bed. she brought it by today with the sweetest card that brought tears of gratitude to my eyes {okay, they spilled onto my cheeks...}

dear leah, i want you to know how grateful i am to be a small part of your life this year. you are a very special little girl and i will miss seeing you each sunday. when you arrive at your new house, could you ask your mother to place this little pillow on your bed? perhaps when you are having a particularly rough day or night this soft pillow can provide you with some comfort to know that you are a child of our heavenly father and he loves you more than there are stars in the sky or sand at the seashore. i am ever so thankful for the twinkling light you have brought into my life. hugs and kisses. love, sister z.

i know. the waterworks are going to start again. sister z always came prepared with a bag full of treats and surprises for your two hours with her. she was constantly asking questions to better understand you and to be better able to serve you. she also answered my email about the spotlight on you. these are her sweet words:

"First of all, please let the lucky person who is called to be Leah's buddy teacher know that they will be blessed beyond measure.  It was such  a joy to take Leah's little hand in mine each Sunday and feel her sweet spirit.  I remember worrying that first Sunday in January whether Leah would like me...well that worry left seconds after we went into opening exercises.  It was magical.

"I 'd like to relay a conversation I had a couple of months ago with one of the little girls from the other Sunbeam class (they had joined our class because their teacher didn't show up).  Out of the blue  during class, one curious little girl  asked me, "Why can't she talk?" I replied, "Well, Leah has a disease called Rett Syndrome. You and I cannot catch this disease like you can catch a cold from someone else,  It caused Leah to lose the ability to speak with words or use her hands. Have you ever been sick where your mommy or daddy took you to the doctor and the doctor gave you some medicine which made you all better?  Well, Leah goes to the doctor but they don't have any medicine which would make her better. She is very smart and she understands everything you say. The thing is, she can't talk with words but she can talk with her "eyes".  The little girl's eyes got big and asked, "How does she "talk" with her eyes?" I replied,  "She "talks"  with her eyes this way.  Let's say we were going to choose a movie to watch, I would hold up two movies and ask her which one, Movie A or Movie B...and she would tell me by looking directly to the movie she'd like."  She then asked, "What are those things on her arms?"  I replied, "Those are braces that keep her hands away from her mouth.  Children with this disease like to put their hands in their mouth.  Though, they can't feed themselves or pick up a crayon to draw or a ball to throw.  Some kids can't walk but Leah can...she can even run!  Leah gives the biggest smiles and laughs a lot..which means she is one happy little girl.

"I want you to know how grateful I am for...the opportunity I had to be a small spoke in Leah's wheel of life."

i love you, little leah. it's pretty obvious it's easy to do. 

love, 

mommy

movin' on up

dear little leah, 

i'm so sorry to have neglected this blog, but we've been b-u-s-y! rest assured i have not neglected YOU. i have lots to catch up on and i will once we're all settled. 

you, my friend, have been a champ during all this upheaval in your life. you are currently sitting on your bed in the front room watching up on the iPad while i finish my to-do list. so many great changes await you in new hampshire and i can't wait to see how you will learn and grow and whose hearts you will melt.

i'll be back in a few weeks with, i'm sure, a lot to write about. the least of which being a 5 day car trip for you.

thanks in advance for being so great. 

love you lots. 

love, 

mommy

onto number 4

dear little leah, 

today you finished potty chart #3...the one we've been working on since december 4th of last year. it took awhile, but you've been on a roll as of late. i have a feeling this next chart is going to fly by. 

plus, you're getting to be a pro at telling me when you're done {a kiss} and choosing your stickers. your eye gaze is amazing on the potty.

hip hip for persistence!!

and...hip hip for dates with dad! you earned it. 

love you bunches. 

love, 

mommy

standoff

dear little leah, 

tonight we had a standoff at dinner. 

voices weren't raised - we both kept our cool. thank goodness. i think we're both getting better at that. 

in the end, i'm not really sure who won. you didn't eat, so one point for you. but you stayed at the table until i was good and ready to let you down. you did eventually swallow the three bites i ever-so-sweetly jammed into you rmouth - even after they sat stagnant in your cheeks for well over 10 minutes each. yuck. 

you pursed your lips. you turned your head. you resorted to burying your face on the table. now that's what i call selective rett syndrome. 

i know you were tired. and possibly you were bored? maybe you weren't feeling well. i'm 99% certain it wasn't the food. i know you love lasagna. and yet there we both sat. for 45 minutes. that's my idea of a friday night. um, no. not really. 

how about no standoffs in the future? a little girl can't live on hollow bones forever. but either way, i love you. 

love, 

mommy

my little yogi

dear little leah, 

thanks for your tips on my yoga technique this morning. it was super helpful. 

love you. 

love, 

mommy

a good day!

dear little leah, 

so much to catch up on, but that's for another day. because today, TODAY, was a good day. 

i don't often write about your good days. it seems i need the therapy that comes from writing only on the bad. but i wanted to let you know that you do, indeed, have good days. you have great days! like today. there was no crying when entering/exiting the car. you ran into school and went up the stairs without hesitation. your teachers reported that you had an amazing day with no crying, sitting for 20+ minutes for art and story time, a great day in the motor room, and approximating names/answers/songs! 

i know! and it doesn't stop there.

as i picked you up for school, you squealed with delight and ran into my arms. you walked down the steps without hesitation {just with my hand} and ran to the car without crying. a. ma. zing. 

at home, we danced and giggled and played all day long. you sat in my lap a lot. i mean a lot a lot. even while i folded the laundry. it melted my heart! 

you got to play with baby bailey {who learned to walk while we were away - not such a baby anymore!}. we played dress-ups and ate cherry tomatoes {a new favorite snack} and danced our little hearts out. we even chased your bubble bug because the sun decided to show its face. finally. 

you ate dinner with ease and with a smile. you had three poopy diapers which is definitely not normal, but it didn't matter because you sat calmly while i changed each of them. you splashed like a crazy woman {happy, but crazy} in the tubby and you sat calmly in my arms as we read the dancing jellybeans. and now you're sleeping calmly in your bed - that you climbed into all by yourself.

see?! a good day all around. 

hooray for good days! 

hooray for you!

love you, little leah.

love, 

mommy