normal

for the past few months, a few words have been floating around in my head. i've been trying to make sense of them. what they really mean, you know?

'normal' is one of them.

what is normal? is there really such a thing? i know it's conforming to some sort of a standard or a usual or regular state, but who really sets those standards? and, if you don't somehow meet those standards, can you really never be considered normal?

some people choose to not conform or meet the standards on purpose. they like to stand out. they like to be different. others have those irregularities forced upon them. they have no choice.

for the first 11 years of my life, i grew up with a mom and a dad and two brothers and a sister. pretty normal. right? well, when my dad died and then my mom later remarried and i found myself with a step-dad and six step-siblings, i didn't feel very normal all of a sudden. but as i looked around, i found that most of my friends had different familial situations. and, as i continued on through life, that mixed family came to be much more normal to me.

i'm pretty sure leah is not normal to most people. but today, she seemed pretty normal to me. sure, she never spoke a word. sure, i spoon/hand fed her every single one of her meals, snacks and drinks. sure, she wasn't able to pick up any of the toys in her rooms. sure, i had to turn the pages of her books for her while i read them out loud.

but it was normal.

today i didn't give any of that a second thought.

today i went on a long walk with my little one and she fell asleep in the stroller. today she happily sat in multiple shopping carts as we ran one errand after another. today she laughed at and was engaged in her favorite tv show. today she snuggled into my arms as we read "little red riding hood" and other normal childrens' books. today she giggled like crazy every time i tickled her. today she stood by my side as i did the dishes, cleaned the bathroom and tidied up her bedroom. today she ran away from me, giggling, each time i told her to come to bed.

that's pretty normal, right?

it's kind of strange that, nine months ago, you could have played this day for me on video tape and i would have thought it was so strange. i'm sure outsiders think it's strange too. {actually, i know they do. i see their stares.} but every day, it just becomes a little more normal.

some days are more frustrating than others. but that's normal, right?

some days i dream about her saying silly things or dressing in silly outfits or being potty trained or eating her meals by herself or not hyperventilating or walking up and down a flight of stairs all by herself. but then i wake up and think, "wow. that was weird." it just wouldn't be normal.

this is leah. this is our life. it's pretty normal to me.

{that looks like a pretty normal three year old to me.}

a good park day.

today we went to the park. and it was a good park day. i emphasize good because sometimes, our park experiences just aren't.it's hard to go someplace where all the other kids are climbing and jumping and swinging and sliding and digging and building...and you just can't.

i keep taking her back because it's good for her to be outside, interacting with all those kids. but really, she doesn't interact. the kids don't let her. it's not their fault. they don't know how to play with someone who doesn't play like them. plus, it can be emotionally exhausting for me.

but, because that's just plain selfish, we put all that aside and had ourselves a grand old time.
we obviously swung on the swings. that is a no-fail activity for us {unless we end up barfing}. leah has preferred swings to all else since the day she was born. countless hours have been spent on the swings throughout her 3.5 years.

but today, unlike most days, we braved the slide. two slides, actually. a short, straight one and a loooooong curly one. leah was spot on. she climbed up those stairs {hands firmly gripping mine} like it was nobody's business and then patiently waited, grin on her face, as i wedged my 28 year old body {into a shoot not meant for a 28 year old body} and off we went.

she loved every second of it.
i loved every second of it.
it was electrifying!here's to more good park days to come.

i'm pooped

or leah is pooped, rather.

"this going potty on the potty is exhausting!" she says.

we moved.

yup. we moved. but only a mile away. again.

in fact, we now live one block away from where we lived one year ago. kind of silly, if you ask me.

the reason we moved a year ago was to begin managing an apartment complex.

the reason we moved last week was to stop managing an apartment complex.

lots of people have made comments to me along the lines of, "oh, aren't you so glad you don't have to manage anymore!?"

and the answer is yes. and no.i'm glad i don't have to care for keys for 42 different apartment dwellers as well as those of their laundry rooms, fire extinguishers, storage and maintenance closets and pools. i'm glad i only have to clean up the mess i make in the laundry room, not the garbage and lint and detergent and unmentionables others leave behind. i'm grateful i only have to worry about my toilet leaking or my furnace not working, not the toilets and furnaces {and lightbulbs and fridges and stoves and doorknobs and screen doors and cockroaches and bed bugs and car registrations and pilot lights and water heaters and breaker boxes...} of 42 others. i'm grateful i no longer have to carry an emergency pager with me everywhere i go. i'm grateful i only have to answer the phone if i feel like it. i'm grateful i no longer have to tell kids that they can't play on the grass...or the rocks...or the cement...or in the pool if their parents aren't there. i'm grateful i no longer have to spend leah's nap time showing apartments to people who really aren't interested or filling out application paperwork for people who never-in-a-million-years would be approved.

but...

we felt it was a great opportunity and blessing to be able to manage. the positions are hard to come by and the financial rewards are great when you consider the amount of work you end up with on an average day. it is a job, and it definitely requires work, but it's great to be able to do it while you stay at home.

when we started managing a year ago, i had a relatively normal two-and-a-half-year-old and spent most of my day at home. as the year progressed, that relatively normal two-and-a-half-year-old turned into a very not-so-normal three-and-a-half-year-old and we spent most of our days and afternoons shuffling ourselves around the county to her various school sessions and medical appointments.

for a job that requires you to be home, it just wasn't working out so well.

we also had neighbors that were pretty particular about the amount of noise they desired from their upstairs neighbors. we were ever-so-lucky to be those upstairs neighbors. and they let us know on more than one occasion that leah's middle-of-the-night screaming was absolutely not okay. i'm pretty sure the worry and stress ryan and i felt each night if we heard leah so much as stir {let alone scream for hours on end} has taken multiple years off our lives.

we were lucky to find a ground floor {read: no downstairs neighbors}, single story {read: no upstairs neighbors}, duplex with only one adjoining wall, a garage {read: no next-door neighbors}.

oh yah. we have a garage. it is big enough to park a smart car in and that's about it, so we use it as storage. it also houses our dryer.

oh yah. we have a dryer. and a washer. and we don't have to go to the bank every month to get pounds of quarters to feed the washer and dryer. i just push a button and they work. it's truly magical. i can actually do other things while i do the laundry, like clean the kitchen and use the disposal and load the dishwasher.

oh yah. we have a disposal and a dishwasher.

and while we're at it, we also have a full-size oven, stove, fridge and freezer. i kind of like it here.

so, yes, we were glad to have managed for a year. it was right for our family and it was a blessing. but it's no longer the right thing and i'm ever-so-grateful to be able to spend the spare time that leah and i have together...with leah.

burden lifted. life simplified. that's always a good thing.

she swims!

at the beginning of the summer, as i watched many of leah's peers really get the hang of playing in the water or begin to take swimming lessons, i admit i was a bit blue. i just wanted there to be one place where leah was at least semi-normal. where people couldn't immediately tell she was different.

the girl loves water. the pool has been her sanctuary for the past three years, so it seemed a good choice.

i bought a flotation vest that went around her chest as well as each arm. it completely constricted her movement and kept flipping her over to her front or backside because she can't control her body well enough.

back = sun her her face. front = water in her face. both = no good.

then we had a play date with our favorite miss aves who was sporting our new favorite friend, mr. safe t. seal himself. you should have seen this girl move in the water! she was a pro.

so, the next week, i went out and bought leah her very own safe t. seal. we tried him multiple times and, much to my dismay, she was terrified to let go of me. the vest takes a lot of core control and you have to learn how to balance yourself, which is exactly what i wanted her to learn to do. we got her to float on her own for a few seconds at best. the minute her chin hit water, she would panic, flap her arms like a maniac and begin to drown {or so she thought - we, of course, were still holding onto her}.

a few weeks ago, i got her to balance and float on her own for about a minute at a time, which was great progress, although the fellow pool goers probably didn't appreciate her constant screaming throughout the process.

last saturday, the girl turned professional. she's incredible! within an hour, she went from floating on her own/slowly falling over to kicking with her legs and paddling as well as her silly little arms would let her paddle. no matter that water was splashing in and out of her mouth. she didn't care! she was having a great time.

today i took her back. it took her maybe five minutes to warm up to the idea again and then she took control. if i was holding her, she would often push away so she could float by herself and today she even controlled her movement enough to swim TO me. as in her brain telling her she wanted to go a certain direction and her body letting her move that direction!

tears to my eyes, i tell ya.

and here's the proof. this was all taken on saturday. the first video shows her hesitancy and her not-quite-perfected balancing and the other two segments speak for themselves.

yay, leah! we have ourselves a swimmer!

Make an on-line slide show at www.OneTrueMedia.com

phew!

and i'm caught up. lots of new posts for those of you who don't have reader...

how to ruin a perfectly good outfit
happy fourth!
a camping we will go
beach week three
olallie what a day
father's day extravaganza
mmmm...guacamole
rett date #2
see jane run 2010
memorial day...night
memorial day...day

how to ruin a perfectly good outfit

mom buys daughter a cute, patriotic outfit.
mom takes one picture of daughter in said outfit.mom feeds daughter dinner.
daughter eats lots of dinner.
mom puts daughter in swings.
daughter swings. a lot. for a long time.
daughter pukes.
three times.
then smiles.
mom removes said outfit.
daughter wears friend's jacket for remainder of night.

happy fourth!

we camped out on google grounds for the fourth year in a row. the fireworks at shoreline did not disappoint.great company.
patriotic kids {note the flag in leah's brace}.very cute moms. {for some reason the boys didn't want their pictures taken?}
leah was looking sleepy, so we tried to keep her up by pumping her full of sugar.but in the end, nothing worked.
fireworks were enjoyed by {almost} all.

a camping we will go

if you're gonna go camping, let me tell you how to do it. go with two other families, one of which has to come later in the day with you because your husbands have to work. but, one family goes early to set up camp and start dinner. that way, when you arrive, the fire is stoked, the food is ready and everyone is happy. works like a charm.thanks to the harmans for being that one family. and thanks to the katzs for enduring the winding roads leading to the redwoods with us.

we ate good food.
we ate lots of it.
we discovered our love for banana slugs.
we roasted our feet.
we roasted marshmallows.
we ate marshmallows.
we burned marshmallows.
we slept {like champs}.
we matched.
we lounged.
we hiked.
we told scary stories.
we shot {wait, they shot. i will have no part in that.}.
we played in tents.
we played in dirt.
we played on logs.
we laughed.
we relaxed.
we had so. much. fun.

and kristen did it all 8 months pregnant. go kristen!

YOU can help!

Research for Rett Syndrome is simply exploding. I feel like they're right on the cusp of various medications, etc. that can help with so many of the problems that plague all of these little girls. I know that one day we'll find a cure, but in the meantime, they're really working on reversing some of the symptoms {hand function, breath holding, siezures, better walking, talking, etc.} ...and YOU can help!

This month, there are two great opportunities for Rett Syndrome to get $500,000 of funding.

First, CHASE Community Giving is giving away $250,000 to the organization who gets the most votes. You only have to vote ONCE and the voting closes on July 12th, so vote today!!!! Just click here to vote for Girl Power 2 Cure (you have to have a facebook account for this one). It's a great organization that Leah is in the process of joining. We'll have our website up and running soon. Very soon.
Second, the Pepsi Refresh Project is giving $250,000 to the top two voted organizations. Click HERE to vote once EVERY DAY in July for the International Rett Syndrome Foundation. We came in 6th place in June and because we were in the top 10, we held our spot for July and can continue on. When I checked this morning, we were in THIRD place!! So close. So vote every day in July! ANYONE can vote! No account needed.
Also, feel free to post these links on you fb accounts and blogs to spread the word! Leah just grunted at me...that means thank you!!p.s. Thanks to everyone who diligently voted in June. It got us to 6th place which is the only reason we're still in the running! Keep it up!!