Monday, February 21, 2011

a special helper

dear little leah, 

as you well know, you are now a sunbeam at church! this is big news. for awhile, we weren't sure how involved you were going to be able to be. but, thanks to some wonderful leaders {ahem, amy baugh} who took the lead and a very special helper, you are able to go to singing time, sharing time and class for the full two hours each sunday. 

sister z goes with you. and you love sister z! she helps you be involved in the lessons and songs and helps you to control your little body. if you're too agitated, she gives you a break by walking the halls or heading to your old stomping grounds in the nursery for a quick snack. 

oh, little leah. you're a sunbeam! in more ways than one, that's for sure. i'm so happy to have such wonderful people in our lives who love you so much and help you do all the things we know you can do. 

love, 
mommy

p.s. sister z writes you a letter each week detailing all you did in class and sharing/singing time. how cool is she!?

Saturday, February 12, 2011

sleeping beauty

dear little leah,
your daddy loves you.
a lot.
today you fell asleep on our bed while you and i were snuggling.
and he couldn't resist taking pictures of you after your eyes fluttered shut.
he was in there for 20+ minutes.
and captured you in your element.

we love seeing you so peaceful.

love you, little girl.
love,
mommy

Thursday, February 10, 2011

shades

dear little leah, 

you haven't always like sunglasses. you were born liking them. 

and we were hard pressed to find  you without them for a few months. 
then your body went crazy on you and you haven't let us put them on you since. at all. 
until claire changed everything. we went to dinner with her over the holidays and the owner of the restaurant came out and presented you all with your own pair of heart-shaped sunglasses. we tried to put them on you. you pushed them away. claire let her mom put them on. and you liked it. so we tried again and voile! if i'd only known it would be so easy.
a few weeks later, you picked out your very own pair that actually fit your head (your old velcro pair make your eyes bulge out of your head - sorry about that). and you love when you transform from "leah" into "shades" when we're in the car. it's perfect. your hands don't work so you can't ever block the sun from your eyes. so your shades do the work for you. and you look fabulous in the meantime. 
and can i just say how much i love this picture? you're like, "yah, mom. i know the sun is shining. a lot. and i don't care. it's not in my eyes. and i look cool. bring it on sun."

love you bunches, shades. 
love, 
mommy

Tuesday, February 1, 2011

not today

dear little leah, 

i know i haven't updated in awhile. 
i was planning to post something new today {other than this}. 
but now i'm not. 
because today i'm mad at you. 
and it's not fair for me to write about you when i'm mad at you. 
i'm only allowed to write about mean strangers when i'm mad. 
i'm tired of your mealtime antics, so you're in your room until piano starts. 
and i'll update tomorrow. okay?
will you be nice tomorrow?
i think it's a good idea. 

love, 
mommy

Monday, January 17, 2011

secret friends

dear little leah, 

i don't think it's a secret that you have lots of friends. so many people like you. everyone knows who you are and you seem to bring a smile to many faces. but, i bet you didn't know that you have special secret friends. friends who watch you - and you don't even know! friends whose days you brighten just by being you. 

at christmas, our dear not-so-secret friends, the mcphies, handed us a beautifully wrapped gift. red with white polkadots and beautiful ribbon. they said someone dropped the gift off at their house and asked them to deliver it to you. and they asked to remain anonymous. so, on christmas day, we opened up this beautiful gift. and inside we found the loveliest of lovely fairy princess dresses. a full, frilly, fabulous tutu with the softest, daintiest pink leotard you have ever seen. 






also included was the most darling book "the jellybeans and the big dance." we've already read it lots. 

and then there was a letter, addressed to you. the letter made me cry. in front of my friends. on christmas day. 

"Dear Leah" it started. "Christmas is such a wonderful time of year. There are so many things about it that make me smile. I love the decorations and the good things to eat and listening to the story of the baby Jesus and the angels and the star that appeared when He was born. The music is also one of my very favorite parts, but I also love the present part and seeing the smiles on people's faces. You probably don't know this, but you make me smile every time I see you! I love your bows and your beautiful hair. I love watching your mommy and daddy and how much they love you and I especially love your beautiful eyes. So, since you give me so much to smile about by just you being you, I hope you won't mind if I give you a little gift for Christmas. I know lots of three year old little girls and they seem to like dressing in pink things...and they usually seem to pick something with lots of layers, so when I saw this in the store I thought it might be something you might like..."

The note then went on to say, "We also heard that there is some amazing technology that might help you, so we wanted to give you something to add to your technology fund. Hope it might help in some small way. I hope you have a very wonderful Christmas. Thank you for helping me smile! Much love, Your Special Friend"

included in the card were some stick-on earrings and jewels and a much-too-large sum of money. leah, i'm not sure what it is, but you get to people. you make them smile and you brighten their days. so thank you for being you. 

and a sincere thank you to your special friend: you put a smile on our faces and brightened our day.

love, 
mommy 

Tuesday, January 4, 2011

what a day!

dear little leah,

i love days like today! miss jenn said you approximated "white" and "blue" and "more" today. multiple times. and at the right times! woo hooo!

and then she said you went potty in the potty! yippee!

and then you took a great nap. alright!

and then we had a dance party in the front room. yee haw!

and then we colored pictures and made cards for some of our family. yay!

and then you used your switch to sing happy birthday to aunt kb. and she cried. woot woot!

what a day. let's go pick up dad and eat some dinner. mmkay?

love you,
love,
mommy

one tough cookie, you are

dear little leah,
 
you are very brave. very, very brave. and you have a high tolerance for pain. and you do pretty well around strangers. these three things combined {plus, the fact that you're cute and giggly} make for much more pleasant experiences at doctors' offices than i would otherwise have. so thanks in advance for that.

over the holiday break we dragged you into two separate offices to have glue and wires stuck to your chest and head and strung back to a machine that drew all sorts of funny lines on a piece of paper {for the ekg on dec. 22nd} and the computer {for the eeg on dec. 29th}. and really, you didn't do much protesting.

you kept relatively still for the ekg and didn't scream nearly as much as a three year old should have when the tech ripped those 15 electrodes off your chest. and you kept super duper still when the tech glued 23 wires to your head {okay, you were sleeping}. and, while we're at it, thanks for being a champ of champs for only getting six hours of sleep the night before that eeg.

i know it's not fair, but in the words of mothers everywhere, "life isn't fair." you can quote me on that. and my mom. and my mom's mom. and everyone's mom. it really isn't fair. but thanks for pluggin' along with a smile on your face. and thanks for dealing with my idiocy on a daily basis. you are truly a joy.

and i love you.
love,
mommy

Monday, December 27, 2010

ho ho ho

dear little leah,

thanks for making my holidays merry. more on that to come.

but for now, i love you.


love,
mommy

Wednesday, December 22, 2010

dear santa 2010: a letter from leah

dear mr. claus,

hi santa. it's me again, leah. full name: leah licious karen stinky danger layton. this is my fourth letter to you, so i think we're on a first-name basis, but i know you visit lots and lots of kids, so i just wanted to make sure.

anyway, i just wanted to give you an update on my highs and lows this year. overall i've been a good girl, but i believe in full disclosure. let's start with the bad {hopefully you'll forget about it by the end of this letter}:

first, i have a temper. man, can i throw a doozy of a tantrum. but, for the record, i'm three. and aren't a few tantrums allowed when kids are three? i haven't checked the official rule book lately, but i'm pretty sure they are. i kick and flail and bite and hit and scream. i'm mean, mean, mean. mommy and daddy are trying to teach me that anger isn't the best way for me to communicate, but i'm only three. i'm still learning. the biting is definitely waning. i've stayed away from furniture and people {for the most part} for months now. hitting has mostly taken the place of biting. i'm super good at whipping my arms around like a windmill and let's just say it stinks for whoever is in their path. i'm quick and i'm strong. but i guess hitting people with my braced propeller arms is bad? i'll try to stop.

second, sometimes i'm lazy. i know, i know, laziness shouldn't really kick in until my teenage years. but sometimes i don't like to do the work it takes to learn how to use my spoon or to bite my food when it's not already in small pieces. i don't always love to walk up and down stairs {mommy's always saying she needs to work out more, by making her carry me i'm just helping her with the weight training part}. sometimes i just close my eyes when i don't want to do something. this is partially good and partially bad. mommy says closing my eyes and taking a break is a much better option than the aforementioned rage, but she also says i still need to work. i say work shmirk. i've got the rest of my life to do that. let me be a kid! plus, it's not fair. i have to work so much harder to do even the smallest of normal things. but i'll keep trying.

third, i kind of don't like to sit still. ever. anywhere. mommy and daddy really want to take me places {like the movies or to dinner} but i just won't have it. if they try to make me sit, i wiggle and wriggle until i set myself free - or i scream until they set me free. i'm working on it. it's a goal at school to sit for longer periods of time and i get better every day.

fourth, i'm a terror at the table. a serious terror. it kind of has to do with not wanting to sit still and it kind of has to do with not wanting to work so hard. but mommy and daddy really don't like when i paint the kitchen with cereal and spaghetti and salad dressing and saliva. i try to tell them it's art, but, unlike the food i toss, that doesn't usually fly.

fifth, my tiny little fingers won't stop moving. oh, i know i can't help that - that's not the naughty party. when i'm snapping i often walk up to dad and my busy little fingers get all tied up in his arm or leg hair. he says it really doesn't feel very good. but it's so tempting. plus it makes mommy laugh. but i'll work on that too.

okay, i'm getting carried away. enough with the bad. onto the good!

first, i'm still walking. i work hard at it every day. i walk, i run, i crawl, i climb and i'm keeping my muscles strong.

second, i'm gaining weight. the doctors told mommy she had to help me gain a pound a month until march and so far i'm doing it. i totally just let her feed me butter and cheese and milk and avocados and all sorts of yummy things to make me chubby. okay, not chubby...just a little more than skin and bones. other than my food flinging or hand whipping at the table, i'm a great eater.

third, i'm so good at following directions. whenever my body will let me, i come when i'm called, i can sit down for mommy or daddy to put on my shoes, i climb into bed, i put my hands down at the table {even if i have to be asked hundreds of times a day}, i close my eyes at bedtime, and all on command! that's pretty amazing for a girl with severe apraxia. double points.

fourth, i give great kisses, hugs and cuddles. i'm not sure how it works, but no matter how big i get, i fit perfectly in mommy's and daddy's arms. like a glove. my hugs melt them, they relish my cuddles and the kisses evoke enormous grins.

fifth, i don't mind when mommy and daddy brace my arms. i've actually figured out how to maneuver around with robot-straight limbs. that's pretty awesome for a three year old.

sixth, i'm pretty good in the car. actually, i'm really good in the car. i either chat {in leah-nese, of course} or giggle or sit ever-so-silently. sometimes i blow enormous amounts of boogers out of my nose and mommy can't get to me immediately, but it's pretty funny so you should let that slide.

seventh, and i'm not sure why i didn't mention this earlier, but i'm learning to go potty like a big girl. this is HUGE for me. i'm not sure if you know much about rett syndrome, but it's really hard for me to control my body. so to sit on the potty and actually get my body to work correctly at the right time is down right amazing. yup, i'm amazing. i've filled up two potty charts already and i loved the prizes so much {mostly my date to the zoo with dad} that i'm still making progress!

eighth, i work so hard in school. my teachers love me to pieces. i'm learning all sorts of things like letters and colors and shapes numbers and the weather. i work hard in occupational therapy and with my communication specialist. i look cute every day {which means i let mommy dress me and do my hair}; so cute in fact, that i've earned the name "miss ribbons" and i get comments on my cuteness daily. i'm a great friend to everyone in my class. i give them nice, gentle pats and they give me sweet hugs. i've learned how to move my body to say "hi" to people, i've held onto my marker and colored for prolonged periods of time {as much as 23 seconds at a time!} and i love to dance. my teachers say i'm making great progress and i'm usually happy as can be while there.

ninth, i let people wipe my nose. let them. yah. i don't shy away or run and hide. i do occasionally wipe my nose on them before they get to me with a tissue, but i'm really getting good at clearing my nasal cavity and letting others dispose of the waste.

tenth, and my final point for this letter, my sleeping is back on track. no more mid-night scream fests. i often fall asleep within minutes of mommy or daddy reading to and rocking me. and, to top it off, they started to wean me from my sleeping medication last month and haven't given it to me in probably two weeks. no problems. oh, they were worried. they were scared to death to wean me. but i took it like a champ. if i get
out of bed, i can usually calm myself down and either find my way back into bed or just find a comfy spot on the floor. i let them sleep until at least 7:00 every morning and i let them know i'm ready to escape from my quarters by politely banging on my door.

so, mr. claus, as you can see, the good outweighs the bad two times over. i'm twice as nice as i am naughty. and i only get better every day. i don't want a lot. i'm pretty easy to please {plus, i can't play with most of the plastic junk they sell in stores}. i'd love a pair of roller skates {mom can give you the full story later - 26 years in the making}. i'd also love anything princess or anything to entertain me on the tv. also, i have a rough time calming my body down, so i'd love a weighted blanket {but could you specially make it for me with cute fabric?}. i'd also love some music. i love to dance. i'm sure you've seen my moves.

that's all. thanks mr. claus! it was fun to see you today.

sincerely,
leah

p.s. we got some carrots for the reindeer, and are hoping you'll like them too. mommy says you could afford to lose a few l-b's. if you're worried about them not having enough flavor {like me - i'm a total dipper}, we'll leave a little bit of ranch dressing in the fridge. mommy sometimes makes it with my vitamin d milk. it's a.ma.zing.


Monday, December 6, 2010

there is sunshine in my soul today

dear little leah, 

today is a good day. there is sunshine in my soul. it's a bit gray outside {which i love}, we have plans to go see the infamous christmas tree lane in a neighboring city tonight with friends while enjoying hot cocoa and doughnuts {yum!}, you are sweet as can be {lots of hugs and snuggles and giggles today!}, and a dear friend sent me the following in an email earlier this week. she was teaching a primary class {young children} at church and she said the manual suggested to share the following story:

"Tell about a girl named Heather Erickson. She had such a severe disease that she had very little control of her body. The only way she could communicate was by her family asking her questions. If the answer was “yes,” she would look directly at the speaker, and if the answer was “no,” she would blink. Heather and her family became very good at communicating this way. Heather’s special love for Jesus, in spite of her physical handicaps, was often expressed in her communications. One day her speech therapist asked Heather what her favorite song was. Heather became excited and was anxious for her therapist to know what song it was that she loved most. After three days of searching and asking questions, the song was finally identified. It was “There Is Sunshine in My Soul Today” (Hymns, no. 227).

"The last two lines, 'And Jesus listening can hear / The songs I cannot sing,' was Heather’s favorite part. Her therapist asked, “Heather, is that it? Is that what you like about the song? Is it what you want me to know? That Jesus is listening and He can hear the songs you cannot sing?” Heather lifted her head and looked her therapist straight in the eyes with excitement and yet almost relief evident on her face. The testimony had been borne. (Adapted from Bruce and Joyce Erickson, When Life Doesn’t Seem Fair [1995], pp. 49–55.)"

my friend then went on to say, "The children were so very fascinated with the girl in the story and they just wanted to talk about her and ask me questions about her and about her disease.  The lesson gives very little detail about all that stuff, but I told them that I did know a girl who couldn't speak or control her hands to learn sign-language, but was still very smart and had to communicate with her eyes.  Later that night "There Is Sunshine in My Soul Today" came on and it made me think of Leah.  That song used to make think of the MTC, but now I think it will forever remind me of your sweet little girl."

i actually found myself weeping in the middle of church a few months ago as i sang that song. i'd never thought of it in relation to you, little leah. and that day, it just really struck me. Christ does hear you. He does care about you. and He knows exactly how you feel. i hope you know that, little leah. and i hope you always remember that. thanks for helping me - and others - to remember too. 

i love you. 
love, 
mommy