Wednesday, September 21, 2011

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. 


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. 

Tuesday, September 20, 2011

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, 

Sunday, September 18, 2011

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. 


Wednesday, September 14, 2011

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. 

Thursday, September 8, 2011

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, 

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.

Sunday, September 4, 2011

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.