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.


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.


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

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.