hip hip!

dear little leah, 

today today was a great day! 

{as my college accounting professor would say, "i said to my self, 'self! great day!'".}

a really, truly, great day. 

you were just bubbly all day. dancing and bouncing all morning. you were very vocal and your teachers said you said, "no" at least four times and they were appropriate and meaingful. you also said, "mom!" when you saw me and "yum" when miss jenn gave you something yummy to eat. 

i love hearing that little voice of yours. 

we watered the plants when we got home and you stomped and sat in the puddles, ran yourself ragged and had a grand old time. 

i love when i know you're enjoying yourself.  and i love when you run.

you ate a stellar lunch and took an even more impressive nap. 

i love when you eat and sleep as you should. 

as we left the house to go to your playdate, you stepped off the front step all by yourself. and then you did it three more times. we've been working on that for so long, it makes me happy to see your confidence with new skills.

i love when you learn new things. 

at your playdate you watched your two busy boyfriends run around like rascals outside their house. you sat by rach to give her company...for 15 minutes!

i love when you sit. 

we had dinner together, just the two of us. you humored me and ate half of your grilled chicken sandwich. i know you don't like all the food i make, but you usually give it a try. 

i love when you humor me.

on our way to get daddy from work, you sat in your first-class seat and smiled. no screams, no slobbers, no scratches. just smiles. 

i love when you smile. 

aaaaaaaaaand, you did all of this, all day long, without your brace. your hands were fantastically still for most of the day. 

i love when your sweet hands are still. 

i didn't get to put you to bed because i was teaching piano, but dad said it was successful. no crying. no stalling. just cuddling and sleeping. 

i love when you cuddle. and i love when you sleep. 

thanks, sweet girl, for all your hard work. these good days are sometimes few and far between but you can be sure i don't take them for granted. know why?

because i love you. 

love, 

mommy

i'm not fit to be your mother...

oh little leah, 

why must we have days like this? 

why must you be cheerful all morning and then scream for three hours for reasons still  unknown to me? why can't i know what is hurting you? why aren't you able to tell me? why do i get so frustrated that the only way to keep both of us safe is to strap you into mr. bob {with both armbraces on} and close your bedroom door hoping i won't hear you and you'll fall asleep out of pure exhaustion {you did, by the way}. 

why do i have to feel so inadequate in this world of special needs? why can i think of more than a handful of mothers who are better equipped to handle you than i am? why does this have to be so darn hard some days?

why? why? why? 

today i have no answers. i'm sure one day i will. but today i don't. and i'm sorry for that.

but i love you. to the moon and back. 

love, 

mommy

choices

dear little leah, 

you are one smart cookie. you are getting so much better with choices. i know most 3 year olds just say what's on their mind rather than choosing between two options their mom picked out in the first place. you don't have that luxury. but, because i know you have your own opinions and preferences, i try to give you options whenever i can. 

choosing your clothes is one of them. you have friends that will NOT wear dresses. you have friends that will ONLY wear dresses. you have friends that wear costumes every day. you have friends that insist upon dressing themselves, resulting in very creative ensembles. i try to keep this in mind when we dress you in the morning and give you options of what you can wear. 

and, surprise, surprise, you usually have an opinion! 

school picture day was no different. dad and i had two outfits we liked. he preferred one, i the other. so i decided to leave it up to you! you should have a say in what you wear in your very first pictures, right? 

obviously you chose my outfit. but to dad's credit, both options were cute. it was basically a win-win. this choice was pretty obvious, what with you leaning on the chosen outfit and all.

you've worked hard with eye gaze and we're so proud of you. thanks for choosing us to be your parents even if we stink at it most of the time. we sure love you. 

love, 

mommy {and daddy}

potty jamba

dear little leah, 

congrats on filling up line no. 2 of your potty chart. you've done pretty good! and if you haven't, most likely it was my fault for not giving you enough opportunities. i tend to forget about it with your silence and all.

line no. 1's prize was beautiful, sparkly princess stickers. and, surprisingly enough, you chose those beautiful, sparkly princess stickers to fill up line no. 2 and earn you a much-anticipated "potty jamba." i did my best to not sample your prize and am proud to say that you ate 9/10ths before you decided you were done. and i happily drank the dregs. 

you did well with the straw at first, but then just weren't getting enough. so we switched to the spoon. i tried my best to be quick, but you let me know when i wasn't fast enough {including that one time i took a picture of your spot-on eye gaze}. 

we're well into line no. 3 and i dare say you've caught on. when you do go potty, you look directly at the chart with a glimmer in your eyes. 

love you bunches, little girl. 

love, 

mommy

the bearded {little} lady

dear little leah, 

thanks so much for helping me in the backyard the other night. you were super helpful. 

i took care of the watering and weeding and you took care of the taste testing. i always thought the dirt looked yummy and kept meaning to give it a try...but now i don't have to! your sweet smile tells me everything i need to know. 

you are welcome to be my right hand man in the garden anytime. next time i promise to give you a tastier treat before we head out so you're not so hungry. the beard is a good look on you but i'm afraid the circus will come and persuade you to join and i'd really like to keep you around here.

i love you to the moon and back!

love, 

mommy

leah crockett

Born on a mountain top in Tennessee California.

Greenest Sunniest state in the Land of the Free
Raised in the woods suburbs so's {s}he knew every tree
Kilt him Cute as a b'ar when {s}he was only three.
Davy, Davy Leah, Leah Crockett, King Queen of the wild frontier!

 

dear little leah,

you put on a good show making people think you're a girly girl. but apparently you're in your element running around like a crazy person with your two cute boyfriends and a davy crockett hat on your head. rachel tried to take it off and you made it perfectly clear you were not okay with that.

the bow's a nice touch. 

love you bunches, 

mommy

skinny minny

dear little leah, 

you are one skinny minny. so skinny that not even skin-tight leggings are small enough for your tiny belly. this is how i found you after you nap the other day.

the pants slowly worked their way down your little leggies and turned themselves inside out. 

but did that slow you down? no way! you just ran around your room with your cute little leggings trailing behind you. a cute, pink, polka-dotted shadow.

not much slows you down, little leah. you are one tough girl. one, tough, skinny little girl. and i love you bunches. 

love, 

mommy

surprise

dear little leah. oh, my sweet, little leah.

you want to know what i hate most about rett syndrome?

surprises.

really, i hate surprises for pretty much anything in life except october 8th and christmas morning. those i can handle. other surprises? they basically make me hyperventilate with anxiety. ask your dad. he knows. and those surprises are usually good surprises.

rett syndrome surprises are a completely different monster.

for about a month, you've been awesome. i've seriously been counting my blessings. thought maybe we were turning a corner. you've slept well, eaten well, moved well. you've been a completely "normal" girl other than your hand function and your speech.

well, this morning, i re-realized how little i really know about what goes on in your little body and what could happen to you at any moment...i was caught by surprise. {remember: i hate surprises.} you woke up screaming your sweet little lungs out. i raced into your room only to find you wedged between your chair and your bed, sprawled spread eagle on the floor. your head was partially under your bed, so i think you hit the siderail on your way down. hence, the screaming. i just about lost it, leah. it made me so sad! so sad that you could be walking around your room and then your own body could take you by surprise and turn on you like that. we cuddled and you fell asleep in my arms for another 45 minutes. i had to wake you up to go to school, and all morning i was caught by surprise.

the eyes rolling to the back of the head.

the pablo the penguin wobble.

the mouth stuck open with drool spilling out.

the stiff arms and legs.

the unsteadiness.

the hunched back.

the breath holding and rapid breathing.

and the worst? the vacant look in your eyes.

i know you're in there. i know you get it. and i want to curl up in the fetal position and cry crocodile tears when i feel like you're not totally here. with me. i try not to think about you not being here. i really don't like that vacant expression. but i also try to not think about you not being here. i mean on earth. with our family. i know it's a possibility that you can be taken from us at any moment. taken by surprise.

i hear of little girls, just like you, having a great day and then leaving us in their sleep. and it nearly knocks the wind out of me. i'm often left breathless. i can't imagine the hole you would leave in my life.

rett syndrome is taking too many girls from us. and it must. be. stopped. no more surprises. only progress. only treatments. only therapies. only cures. only you and me and daddy for a good, long time.

that's a surprise i could handle.

i love you.

love,
mommy

miss ribbons

dear little leah,

yesterday morning as i dropped you off at school, we were greeted at the gate by a nice man who works there. he kindly opened the gate to let us in.

as we approached him, he gleefully shouted, "IT'S MISS RIBBONS!" and then went on to explain that's what he calls you. he {and all the other teachers and employees at your school} apparently talk about you and your hair and your ribbons on a continuing basis. they love them. every day a new ribbon color and every day a fun hairdo.

do you think they know how hard i work on those hairdos, much to your dismay?

i think it's super important for people to present themselves in a put-together fashion. doesn't have to be expensive. doesn't have to take a lot of time. but i think it shows that you feel it is important to take care of yourself and your body.

so, miss ribbons, next time you're screaming at me in the morning to stop brushing your hair or wiggling away just as i've finally captured your hair perfectly in a rubber band, just remember this. and remember how much we all love you, our little miss ribbons.

love,
mommy

a brand new year...

dear little leah,

just got back from vacation, you and i. and while we're on the subject, thanks for being an A-number-one traveler. superb. fantastic. amazing. really, you deserve a prize. i'll think of something...

the day you got back, you started a brand new school year: your first full year that will be spent at the SAME school with the SAME teacher for the entire year. phew.

miss jenn is your new teacher and she seems really great. she's read all about you and rett syndrome and has had great questions for me each day this week. this makes me feel like she wants to learn more about you and how your little body works. i'm also starting to get some great ideas from other brilliant mommies who have girls just like you. phew again!

i got so nervous wondering how you would do with new teachers and aides and kids in your class. so nervous, in fact, that i forgot i already knew exactly how you'd do! obviously, you'd do great. you always do. you're so easy going. you love people. and you love school. you make these silly transitions so easy on me. thanks for that.

so, here's to a new school year. and a new first-day-of-school photo in front of our cute, blue garage door. if you're curious as to why your pig tails are wet and dragging instead of dry and bubbly like usual? it's because you and mommy drove {well, you sat...mommy drove} 12+ hours the day before and got home at 1:30am. thus, the only time for a bath was right before going to school. and, if you're wondering about your new school outfit? the skirt is cute and i love the way the little bobbles flip flop back and forth as your bum shakes when you run...but the plain white and slightly stained shirt is due to the fact that all your summer clothes were either 1} dirty from vacation or 2} squished from being in a suitcase for 36 hours and all your new school clothes are too fall-ish for this 100 degree weather. good thing you're so darn cute...wet hair, plain shirts and all.

i love you to the moon and back! can't wait to see all you learn this year!!

love,
mommy