Lia

caringbridge

2010-11-07T22:50:00.000-07:00

caringbridge is where we are. i will try to update here and there, but this is the main source of information. things are not going well, but i think we're in the right place.

children's hospital

2010-11-05T22:43:00.001-06:00

well, we're in boise.

lia desatted today at 1L, and went down to 78. she came back up into the 80's, but couldn't recover until i turned her up to 2L. bringing her back down, only let her hit 90-93%.

i don't have a lot of great words right now, i'm pretty exhausted.

i called the surgeon's office to talk to his nurse. after a few words like 'desat 78, 2L', and 'not eating or swallowing', she put me on hold. the next thing i knew, i was talking to Dr C. he said to just bring her down today. that if she's been struggling and sick this long that she needs more time, and a lower elevation.

we drove through the sunset, and i watched the clouds painted pink and orange. they splashed hard against the blue of the sky. lia alternated between short spurts of singing and laying without animation in her carseat. just about the time i feel so overwhelmed, she does something completely grace-filled, like singing and waving at clouds.

i should be more like her.

she's down more than a pound, 6 oz of it this week. i like Dr C. it's why i named him as someone who looks out for her, because he's a big picture kind of person who likes small and extraneous details. we're going to check her for reflux, severe reflux. just in case. they've done x-rays too, so we're going from there.

i'm glad dave's here, and i think lia is too.

real life

2010-09-16T20:35:00.000-06:00

i always figured that to be beautiful, i'd have to have a perfect shape. i also thought the only way to have a good life was for everything else to be wonderful, easy, perfect. it's how children think.

i'm not a child anymore. i don't have a perfect life. i don't have a perfect body.

i do have a good life, a wondrously joy-filled life.

because:

real life is about cords, and tanks. it's about the little girl so full of happiness to see something new, it makes the world a better place.

it's about being loved. it's about loving. real life is this crazy mixed up thing, the bitter, the sad, the sweet, the wonderful. if i waited until i looked just so, if i waited until lia had no encumbrances, we'd miss so much.

here's to this imperfect life.

sassy girl

2010-08-24T20:21:00.001-06:00

it's funny how some pigtails make her look so much older. i still tell people that she's 1, though. it keeps the comments down.

today, though, lia heard the cat outside. she didn't see her, she just heard her. lia signed 'kitty' and made her way to the door. there she patted the door, tried to share her ducky friend with the cat, and tried talking to her. the whole time, the cat miaowed and lia signed 'kitty, kitty, kitty'.

along with this, she's recognizing engine noises. so far she only differentiates between trains and everything else. so she signs 'train train' for trains, and 'plane plane' for everything else. she even just tries to chat sometimes. she'll sign whatever sign she can think of to see if we respond. i'm loving this communicativeness, even if it seems to happen most when i'm trying to put her to bed. i figure a little chatting never hurt anyone.

duckie chickie friend

2010-08-19T20:26:00.000-06:00

the world is full of connections. i've known that for a while. at school, dave and i used to be part of a community called The International Souphouse. it was an intentional community that spanned years, majors, continents, and graduation times. many within this group married someone else. it's sort of how i met dave. it's sort of how i got to be best friends with him.

it's also sort of how this chickie ended up in liajoy's hands. because i became friends with someone that is a friend of some of those with whom dave and then i became close to. did that make sense? probably not. basically, someone knew a friend from the souphouse. we knew that friend. she knew dave. she found lia. she started emailing me off and on.

she has the prettiest family of 3 kids, and a love of life and writing that have often cheered me up and encouraged me to keep trying, to keep having faith. so she sent a little care package of things. in it was the chickie-duckie. this is what zaya calls it. lia just likes hugging it, and staring at its face. and i'm just touched with the connectivity of the world, and that the Souphouse is still alive in our hearts.

rainbows

2010-08-16T15:41:00.002-06:00

last week we had a storm. all through it, i kept thinking, "it's still July", that the summer is middle-aged and still ready to surprise me. it's August, mid-August, and the summer is getting positively creaky with the promise of fall.

so really, these storms shouldn't surprise me. even though we just don't normally get storms like this. random, wind-filled storms that send the rain horizontally through the fields to slam into our house. with the scarcity of storms, i keep wondering if the kids will get scared by them. i wonder if lia will get scared by them. zaya, i know has mostly grasped the wild wonder of a storm that breathes through our hot land bringing puddles.

i wasn't sure about lia, though. she loved it. all of its wild wild gusts, the rain that was so fat, it dripped like balls of cotton soaked before being tossed. i taught her the sign for rain, and for wind. she happily babbled her mandarin-sounding words at the storm and at me.

and after the storm, there were puddles. puddles for splashing, for jumping, for sitting in while enjoying another deeply whimsical rainbow. even when things are uncertain, i'm finding the good parts. each rain brings the wind, the water, and rainbows. the wind breaks the fields, the rain waters the grass, the rainbows feed our souls.

where we are these days

2010-08-10T10:27:00.001-06:00

we are over here. these days we've been mostly trying to figure out what's going on with lia and her sleeping, and her breathing. i am desperately searching for answers, and bordering on annoying with the doctors. hopefully soon i will know something concrete.

holland

2010-08-05T14:45:00.003-06:00

there are all these sweet things people write about the place called 'Holland', but it's always from a parenting perspective. i wonder what thoughts, fears, hopes, hurts, and other things would come from the heart and mind of a sibling who just as abruptly was transplanted to 'Holland'. i'm guessing it would not be filled with the same kinds of thoughts and feelings. they're valid, though, and i hope to remain aware of them for both zaya's and lia's sakes.

i know this is lia's story, but zaya plays a very large role in her story. i've known for a while that zaya sees the world differently, but i'm only now beginning to see how much this is true. he is conscious of lia's cords, and helps to untangle her. he worries if he doesn't see me load a tank in the truck for lia. he thinks our trips are only to the doctor, and he's mostly right. we are trying to change that more and more, but it takes a lot of time to straddle the world of 'normal' and the world of 'holland'.

he's driving his baby to the doctor because she can't breathe well. he frequently asks where the tubes are for other babies, and worries when they cry. when he's playing pretend, his animals have their own tanks to breathe better, and sometimes he ties cords around their faces to make sure the air is getting in.

it kills me that he understands these things, that they are normal to him. i know plenty of people would think it's so precious and special how he does this. not me, i hate that he knows about this. i hate that he worries that i will take lia to the doctor someday and not come home with her.

his heart is so big, so kind, so loving, and yet he's still a boy. he takes her toys, and builds fences to keep her in one spot. she follows him around, and watches him adoringly while he does some amazing feat like walking without falling. she tries to walk, sometimes falls, and he's there to help her up. i know it's a good life, it's just hard knowing that zaya already knows some of the hard things.

sometimes rain

2010-07-11T22:03:00.002-06:00

on caringbridge

back country II

2010-07-01T14:10:00.000-06:00

sometimes it's nice to remember good things, like flowing water. it's the meltwater from the winter snow-packs that brings life to the desert. it brings possibilities.

i need some possibilities these days. her physical therapy isn't going that well. it's not that the PT is a bad one at all, it's that lia makes such slow progress.

it leaves everyone scratching their heads. they make vague statements about it, and then keep doing the same things over and over again. as if somehow, they will magically work.

i used to think we'd get lia walking. that she'd then be discharged from PT for life. i figured we'd go explore somewhere like this valley. she stumble over some sagebrush, and then i'd carry her. it's not at all that i mind carrying her all the time. i'll carry her until i can no longer do it. i just didn't know she would need it so much more, and sometimes i just get tired.

stay tuned

2010-06-29T08:12:00.002-06:00

i've been taking a break and doing a lot of thinking, recovering, and living. we've also been stuffing lia's world with birdsong, sprinklers, and books. these nicely complement the doctor's visits, the physical therapies, and various evaluations. now it's time to catch up.

keep checking below for new-old pictures of lia and zaya as we venture into summer.

views

2010-06-27T14:16:00.000-06:00

these are some of the things i am lucky enough to see when i take the bike down our gravel road and up to the dirt roads by the canals.

i can't decide which one i like best. the smiles, the giggles from the back, or the waving fields of barley with a silhouette of the mountains. i don't have to choose, i just have to step outside with them and go for a ride. it's getting easier to do it. the world is coming back into a normal shape. every day that goes by without major troubles or complications, is another day that we begin to approach a normal that encompasses the activities we used to enjoy. this is a good summer.

carpe

2010-06-26T17:20:00.001-06:00

just so happy

to be outside

we just can't contain it!

lately our escapes outside are rare and limited. lia has been sleeping a lot. it's getting worse. sometimes she's only awake for 4 hours a day. she is just so very very tired. we checked her thyroid, and that is perfect. i'm baffled. soon, we will get her checked again if it does not improve. we've seen the dr once, and that was our consensus. i hope she is just growing super duper fast, and will emerge from her sleepy cocoon soon.

tomato love

2010-06-25T17:13:00.000-06:00

lia loves tomatoes as much as the rest of us.

and when you find yourself saying 'when you finish your food, you can have a tomato', you know you've got a tomato-lover.

she likes just helping herself. a big bite, some seeds dripping, and then a giant grin. repeat, repeat. tonight it's eggs stuffed into tomatoes, roasted with cheese on top. because i finished my food, too, and it's tomato time.

tomatoes

2010-06-24T14:12:00.000-06:00

my garden died. it has just been too chilly, too unpredictable. the tomatoes looked forlorn.

i was fairly sure we'd get some tomatoes somehow, but i wasn't going to worry about it. that same night, i got a phone call from someone down the way. they run a greenhouse, and they were not able to sell all their tomatoes. they were going to have to throw them out, unless they found someone who could use them.

she wondered if we could use them? boy, could we! not only did we use them, i shared them with some of our neighbors. it felt good to have something to give. these days i feel like we are mostly being helped. i loved giving out big bags of tomatoes.

we had 2 containers full of the largest, and reddest tomatoes. we've eaten them like candy. i have frozen them. i didn't feel like canning, it was too hot. however, i have almost 40qts frozen. they are filling up our freezer, and it's lovely. i love how God provides for us, even when we're not sure it will happen. i love how the tomatoes are something extra, luxurious, and we even had enough to eat every day and every meal for a full week.

because

2010-06-23T22:06:00.000-06:00

because i love his smile as he works.

and i love seeing them together, enjoying what their daddy made for them. and because he likes seeing their pictures while he's gone at work.

cooool

2010-06-23T15:07:00.001-06:00

lia discovers sunglasses.

in this house, 'different' is becoming movie-star cool.

ode to train

2010-06-22T17:05:00.000-06:00

again, signing time:

she signs 'train'

'more, please.' this is a hurried one, as if she can't get it out fast enough.

'bye bye'

'train, train'

this has been another session of 'signing with liajoy'.

sandbox

2010-06-21T23:01:00.000-06:00

dave made this sandbox. we like recycling the junk that people abandoned in the yard and house before we moved in. there's a lot of it to re-use. i admit, a lot of it has been hauled to the dump by his industrious hard work. some of it, though, is proving useful.

like these old railroad ties. some we used to mark out future flower beds. the rest? they went to this sandbox. leveling these, and then adding 1/4 yd of sand has made the perfect spot for play. the cute little tree is healthier this year, it makes for nice shade almost all day long. we're taking advantage of it.

paying attention

2010-06-20T17:50:00.000-06:00

she is 18 months. this happened when i wasn't paying attention. i carefully ignore her age. i focus on what she does that's awesome. i focus on the silly interactions she and zaya have. i focus on her love of dave, her love of me, of life. i tell people she's 1. i realize that this leads them to the supposition that she's 12 months old or close to that. i don't mind. it prevents the following comments:

'you shouldn't carry her, you will make her lazy.'
'she's old enough to walk, you need to let go.'
'how come she's not walking/talking?'
'why is she still crawling?'

or any manner of developmental inquiries that feel nosy to me after a while. she is who she is. i will carry her as long as i want. even if she were walking perfectly, i'd carry her. we carried zaya until he was 3. i've had people inquire as to what was wrong with lia, what i did to her, and other things of that nature.

telling people that she's 1 forestalls some of that. that makes life easier for us.

father's day in the back country

2010-06-20T12:08:00.000-06:00

we do father's day differently. dave talked me into going up north with him. i still get anxious, thinking about leaving and doing something spontaneous.

but i did it. i left. we packed snacks and orange fleeces for us to wear. i have one that dave got me a long time ago. lia has one that zaya outgrew. so we are the girls who wear orange. because we like orange. because in the back country, it's good to be visible. someone should perhaps give dave a memo on that. he likes black.

i love how the kids love their daddy. he's always willing to take them for a while so i can play with the camera, or just have a break. i wandered. i looked. i experimented with the camera. i toted lia without a carrier, and showed her the wonderful mountains, the water, the trees, the moss, the rocks. she was very impressed.

this new me is able to get out again. there's those personality tests, that ask questions like 'do you like things nailed down, or are you spontaneous?' i like to be spontaneous when the world acts the way it should. since lia, our world was wrecked, turned upside down, shredded. now it's coming back together, and i am finding a semblance of balance. as i do, i find myself doing more silly and random things. it's fun. even dave smiles.

cooking with lia

2010-06-19T23:08:00.000-06:00

lia walks best with kitchen things in her hands. i'm not sure why, but she likes it.

she even bends her right leg some. i like the confidence it gives her. the PT does not like her holding anything. i'm unclear as to the reasoning. i feel like anything that helps her balance and gain confidence and strength is a good thing. i'm working on communicating this to the PT.

see? i like this unabashed delight.

i like having a kitchen that is accessible for kids. almost every night i am picking stuff up from the floor, and putting it back in the drawers and cabinets that i allow zaya and lia to get into. i don't wash them until i am ready to use them. otherwise, i'd be washing a lot more than enjoying these silly things.

indivuality

2010-06-18T22:57:00.000-06:00

this is my girl. under the orange socks are two of mine. one has polka dots, the other has ducks. yes, i like socks. she signed 'please' for the leggies to be put on her arms. and now she just enjoys her touch and feel book. if this is any indication, poor dave will be the only normal one in the house. zaya and i don't care about matching socks, we prefer fun colors. dave needs his matched. lia has taken it all one step further. i love seeing this girl show her personality.

good friends

2010-06-17T19:59:00.000-06:00

lia likes books, lia likes cuddles.

and we all like giving them to her

zaya even shares his stool with her.

just a few words....

2010-06-16T19:55:00.000-06:00

she came to church with her mom one sunday, and i was a lonely 12 year old in church. i wanted a best friend, but was still an outsider. so i sat with her. her long blonde hair was so straight and silky. she had the nicest smile. i don't remember when i realized it, but i discovered she was deaf. she used sign language the most. one short sentence signed by me had her praying at the front, and had us becoming close friends. she taught me more sign language. i loved it.

we used some with zaya, because it helped him say more than his mouth could say. it forestalled some tantrums, some frustrations on both our parts. lia took much longer to acquire any signs. up until now, she only had 3 that mattered: more, cheese, potty. mainly she used 'more'. it got her the most satisfaction.

now, though, lia likes sign language. she shows no real inclination to talk, and increasing frustration at wanting to communicate. so i began teaching her more, but not expecting much.

'more'

'down'

'help'

she also signs: train, bread, kitty, and please.

the joy part

2010-06-15T17:52:00.001-06:00

it's finally warm.

and i find myself sometimes forgetting these days.

i forget the scars that dot her body until i lotion her. then i run my fingers over them, they are faded reminders of long nights, and lonely days. i forget the delays, even as i watch her do things that aren't quite right. i forget her age, it's easy to do. we treat her like she has just turned 1. i forget the times that we worried about her color, i adore the pink lips and fingers and toes. i sometimes almost forget appointments. thankfully, i don't really forget those. until we attend an appointment, i forget the label 'special needs', just for a little while.

because it's outside time. it's time to run and play. i play, zaya runs, lia loves everything she sees. i seriously thought we'd have a lot of problems getting her used to being outside, but she took to it like she's our child. in love with the outdoors, she waves at birds, trucks, tractors, and trees. every new noise, new sensation, and new sight is met with sheer happiness.

this is the joy part, the part of life that fills me up inside with happiness. all of our scars are healing, and soon they will be as faintly silver as some of lia's scars on her body. i'll look over my heart, and not run into a raw, red spot that hurts to even be seen. it will just be faint. and i'll think 'o, that. that was HARD, but i'm alive. i'm ok, thanks to God's healing grace.'

new noises

2010-06-14T22:51:00.000-06:00

lia has discovered the she can make the 'pbbbbb' sound. it's reminiscent of the sound Ralph makes in the Mouse and the Motorcycle by Beverly Cleary.

it's a serious effort.

i hope it means talking might come soon.

life in the rain shadow

2010-06-13T20:59:00.000-06:00

this is our june, cool, wet, delicately green in the way only a desert can be after long months of cold weather. we've been watching the clouds float, drift, race by our windows. we've been counting a tumbleweed's path through the fields. we've been speculating whether the fields south of us will sprout, or if they are fallow this year. these are the many unknowns that we find delightful to taste.

i've been privileged lately to have been one of the first responders to 2 different accidents. both were serious, both i drove up on just after they happened. out here, everyone stops, everyone tries to help. being the only one with EMT training, i found myself directing a little more than i'd done before. i think this past year and a half with lia has dissolved my uncertainty in some kinds of situations.

the second accident at which i helped, the mother ended up leaving this world for heaven. i knew the minute i saw her that this would probably be the case. i held her hand anyway. i held her little girl's hand in the backseat. i tried to comfort them both, even though i was sure the mom's soul was already in the presence of God.

both accidents were hard to see, to think about, but it was my privilege to give back just a little something to someone else. after all that has been done for us, all the kindness and caring given to us by a community to whom we were first strangers, i am glad to have something worth giving. it reminded me that there are many ways in which we frail and delicate creatures are one step from the embrace of God's loving arms. this is our rain shadow time, where the clouds are gentle and the rain is soft. it is our time to grow, i hope, and i hope our harvesting is a long time from now. if it's not, i hope we've lived in a way that leaves behind a good taste, and hope in someone's heart.

love

2010-06-12T01:01:00.000-06:00

i don't have a lot to say. i love lia's face, her bright smiles, and her funny way of wearing hats. i love how the full moon is starting to fill in the edges left by the late setting sun. i love the longer days, the almost promise of summer and warm weather. the green outside is startling to the eyes after months of dichromatic color palette of golden browns, and shades of grey have dominated our landscapes. i love that we will soon slide into july, and that lia has a round face.

tolerance

2010-06-10T23:01:00.000-06:00

dave swears that salto is getting old. i like to think she just likes girls. i mean, she lets me pet her all day long, but not dave. the same held true for zaya; she ran from him. now, 5 years later, she likes lia and will let her pat chubby hands on her back, and even let her pull on ears. whatever the reason, i like our cat liking lia.

showing off

2010-06-09T11:05:00.000-06:00

i was sweeping, cleaning, and generally hanging out with lia.

i heard a snort, a giggle, and this is what i saw.

she has no trouble knowing when she's being funny, but the best part for us is that she likes being funny even when no one is watching. she just likes making herself laugh.

books, II

2010-06-07T21:06:00.000-06:00

some books look interesting.

they have pictures of food in them. since lia approves of many foods, these things are fun to look at. she sprawls on the floor, i'm not sure where she learned to do that, and gazes intently at the book.

i think she's planning her first cooking meal.

and this is what we do when books are boring.

when all else fails

2010-06-05T21:05:00.001-06:00

usually she keeps trying to put them on her fingers.

after a while of trying, though, she came up with a new way to hold them and walk around.

puppet love

2010-06-04T20:58:00.000-06:00

mom got lia these fun books that have finger puppets on them. lia adores them.

i will be the first to admit that zaya learned both 'this little piggy' and 'old mac donald' from these books. i am remiss in the children's songs department.

but we like puppets a lot. lia cooperates by laughing and taking puppets from us as zaya and i have pretend puppet conversations. with these books, i'm sure she's getting ready to have her own puppet shows soon.

books, I

2010-06-03T20:57:00.000-06:00

everyone has seen it, the signs that say 'read with your child 20 minutes a day'. lia is good at taking care of that on her own. she carefully picks up a pamphlet, my latest novel, or a lego handbook, and proceeds to carefully peruse it at length.

i don't think i need to worry about her interest in books, but maybe i should be concerned about the things she comes up with in her reading habits. surely a combination of legos, science fiction, Bible stories, and food/cooking catalogs must make for an interesting milieu in her head.

popsicle sticks

2010-06-02T22:44:00.000-06:00

lia and i stayed at home while the guys ran some errands to get my medicines and pick up groceries. i lay on the couch. she was more industrious.

i'm not sure where she figured out that this kind of exercise was useful, but she spent a lot of time trying to put the popsicle stick into the bucket using only her mouth.

maybe she is practicing to be a magician.

whatever it was running through her head, it made me smile. i'm thankful for her.

pretty girl

2010-05-31T23:20:00.001-06:00

she will be our only girl, our last, our wonder, unless something miraculous happens. i thought it had, i wondered, i panicked slightly, but there is no third that will happen. i believe each child is a gift, but some are not meant to breathe on this earth. we have had 6 such gifts now. i am so thankful for the 2 we have here on this earth, they brighten the world just by existing.

so i'm not really interested in hearing more from those who think it was irresponsible to have another child. i'm not buying into the belief that this child was a burden or problem added to our family. i'm not going to agree that we don't deserve another child because of lia's problems, or because of our financial state. our children are loved and cared for, above all else. the help we receive for lia's needs is something for which we are incredibly grateful. had she been neuro-normal, and physically capable in the way of most children, no one would have felt free to even judge our planning or lack thereof which could have brought us another child.

lia does not mean that we should not have more children. lia is not some flaw that proves i don't deserve the hope and joy of another child. lia is not the reason i miscarried again. lia is simply lia, our beautiful shining girl, just as zaya is zaya, the strong funny boy. they lift our lives up from ordinary and bring in a sense of heaven.

perhaps someday we will be able to add to our family again. perhaps we are only meant to dote on these, our two, and then on others' children as needed. i don't know. i do know this: every child is a gift from heaven, every single one.

the important stuff.

2010-05-29T11:33:00.000-06:00

today we skipped all the important things, the therapy, the exercises, the laundry folding, the washing of dishes. i found some things to do that were more relevant to our lives.

we played peekabo, and hide-n-seek with lia. i took blurry out of focus pictures. because sometimes the more important parts of life are the ones you need to live. they race by with a whir, and even the fastest shutter catches only a glimpse. not every day is a portrait day, and no one lives in portraits anyway. some days i get awesome and clear shots, other days are just a blur. i want to remember all of them, even the blurry days. i want to remember the days where i'm in the picture and i don't like the way i look. it's not about me, it's not even about perfect pictures, or pictures that represent a perfect life. it's about remembering these crazy and wonderful days, it's also about remembering the days where i'd rather hide from reality and play games. all of it, the good, the bad, the blurry, is important.

cookies

2010-05-27T17:17:00.000-06:00

she's got a good snack-radar. having never, to my knowledge, seen me pull cookies out of the oven, she still knew that they were something Good to Eat. we don't eat a lot of sweets around here, and most of my cooking is relegated to meal type foods and snacks that tend to be healthy. they tend to be healthy by default. it's cheaper to eat healthy foods than to buy junk, at least out here. perhaps it's different in cities. i forget, it's been a long time since we lived in a Big City.

so zaya and i made chocolate chip cookies. obviously, the excited laughter and clasping of hands for 'more' meant that lia needed to taste a cookie as well. so we all had some. since lia was born, i've found that some things are not so important. waiting until 2 for cookies doesn't seem to matter as much as it did with zaya. for some reason, i thought it was a good idea for him. i don't know why. i need to remedy his cookie deficit and make sure lia doesn't acquire one.

how many cookies will that take?

future chef

2010-05-26T10:10:00.000-06:00

princess waves with a spatula. she actually likes to hold my kitchen stuff, she gets into the cabinets and stacks the little cups i use to hold spices when i'm making indian food. she inspects the mixer, the colanders, the pans, the lids with care. she also likes to sit with me and look at the Cook's Illustrated that mom got me for a present. these magazines are filled with recipes and pictures. looking at one, there were pictures of bread and fruits. lia looked at them and got excited. she then looked at me, patted the magazine, and signed 'more, more, please!'.

stepping out

2010-05-25T21:10:00.000-06:00

awkward, uncertain, but progressively so, lia is becoming a walker.

and it's fun, she laughs the whole time.

she wobbles and stretches for balance, and then steps again. she falls often, but she gets back up. she tries again. my stubborn bird will keep trying until she's running. most days, i don't even pay attention to how old she is. so the steps, the walking, they are just as exciting as if it had happened on time. maybe it's a little more exciting than that. i can't tell. i'm just thrilled she is upright and moving around with some intent to continue doing so.

phone wonders

2010-05-24T20:05:00.001-06:00

making the phone light up for liajoy.

she can barely contain herself.

this is just how lia approaches life. wide-eyed, with a giggle, and a lot of wonder. if zaya is any indication, she won't be losing that wonder anytime soon. actually, dave thinks i still have it. a vee-vee-vee of pelicans flying in the sky still makes me stop and stare. when a crop duster comes to buzz our fields for 45 minutes, i interrupt dinner to sit outside with lia and zaya. i teach them how to wave, i tell zaya airplane terms and we speculate on the pilot's objectives.

what's not to like in this world when it's sunny and you've got two bright-eyed children ready to delve into the mysteries of trains and spider webs?

sharing

2010-05-24T13:08:00.000-06:00

sharing is a little hard to do still.

but she's learning that happiness is better when it's spread around to everyone.

obviously, though, the phone is better off in her hands.

trickster

2010-05-23T14:07:00.000-06:00

a new side of lia's personality came out today.

she offered the phone to zaya. he willingly came to take it.

she faked him out and took it back.

she knew exactly what she was doing, too. surely that is somewhere on those magical developmental charts. i'd say it's under the 'advanced social' section. maybe i'm just making that up to make myself feel better. does it really matter? she faked him out, we all laughed. she was delighted. she continued to fake him out for a while.

nana love

2010-05-22T15:04:00.000-06:00

the last time mom saw lia, she was hooked up to everything under the sun. she was so fragile, no one knew for sure if she'd live.

in spite of that, when mom and dad came into the room and whispered, 'hi' to our bird, she smiled in her sleep. she held dad's hand. she must have known that they were there to love her too.

so this is a fun visit. lia is sassy and strong, and into everything.

she and mom made fast friends over her cell phone. mom's phone beeps and lights up. it's far more fun than an old phone. i'm just happy seeing the two of them together at last.

kitchen elf, II

2010-05-21T17:03:00.002-06:00

just a little too much fun to be had in the kitchen.

the bottom 2 drawers are specifically filled with random fun things for her to play with.

excuse me, i must go join in the fun!

kitchen elf

2010-05-21T17:00:00.000-06:00

seriously, can you resist this?

i can't. it gives me time to play in the kitchen now that lia can stand and empty out my cupboards and drawers. they are all filled with plastic stuff anyway.

she is also quite proud of being able to open and shut so many drawers and doors.

dave says she is practicing to be a chef someday. i think she's got a good start going. she approves of brightly colored foods, spices, and just about anything i cook.

hands

2010-05-20T21:25:00.000-06:00

sometimes someone will see lia on a really good day. her fingers will work just perfectly, she will stand with wonderful balance, and everything looks good. the surprised comments come 'she looks so normal. i don't see anything wrong with her.' i'm left feeling awkward and unhinged. do i imagine these little oddities, these lacks, these strange inequities between her and the standard? i've decided i don't. i mean, the physical therapists, the developmental pediatricians, and her whole team are watching her for these reasons. it's still hard when someone acts as though there is nothing wrong.

they blithely speak of so-and-so's child who spoke late, walked late, did xyz late, and is *just* fine. as if i just need to relax and not worry about milestones that lia is missing or late to the starting gate. i don't need her to catch up, i don't need her to be advanced. i don't even need for most people to see her differences. i just need for them to not be minimized or glossed over as if they are of no concern. i suppose that's contradictory. it'd be like worrying because you think someone's leg might need stitches or be broken, only to have an observer say 'o, that looks like a scraped knee. i had one once, and i'm just fine.'

lia loves to touch things, she will push them around, pick them up, and in general explore the very nature which makes an object unique. her thumb and forefinger, though, don't work well together. she can sometimes pick things up this way, but they usually fall from her hand before she gets it to her mouth for a taste. she has progressed from grabbing with her whole fist to using her first 3 fingers plus thumb to hold something. i imagine that in the months to come she should move to 2 fingers, and eventually 1 finger. her brain will tell her arm to tell her hand to tell her finger and thumb to grasp something. it will respond by picking up the object and doing what she wants with it. as easily as that, someday it will happen.

north

2010-05-18T20:26:00.000-06:00

it seems like we'll never go there, north. it's like the dream the slaves would have. north represented more than just a physical location. it was freedom, it was hope for a new future. we can see this from our backyard, the snowy pearly mountains. they are marbled, they are distant. i feel like it's the moon. one thing after another seems to get in our way of going.

so i'm admiring them from here, and waiting for everyone to be healthy again. mostly it's lia who gets sick, or tired so easily. so i keep waiting. this summer, though, i've informed lia that she has to be stronger so we can go up there. i'm hoping it all works out for us soon. dave and zaya have been able to have some adventures.

it's not that i mind being here with lia, it's that i miss the fresh air. i miss the taste of chilly snow in the summer. i miss the cold splash of rocks and water, the green scent of trees and mysterious shady spots. i miss being me.

sandbox

2010-05-16T23:22:00.000-06:00

it's the slow introduction to sharing for them both:

lia is not so sure of the sand, but likes standing on the outside of the box and playing with some toys. it's good for her standing.

and zaya seems pleased to have her around. i look forward to watching the two of them this summer. we'll all be outside, getting dirty, sharing everything from sand to popsicles. i bought a mini-popsicle mold for $1 the other day. i'm going to fill it with fun things, even just water. it gets so hot out here, that even the water isn't cold enough after a while. a frozen ice-pop should do the trick for us all.

dandelion love

2010-05-15T21:20:00.000-06:00

zaya is a good big brother, carefully and gently showing her the world. he gives whatever it was he has just discovered to her. and he does it for the joy of her smile. i'm caught, i'm charmed, i'm humbled by the bigness of his heart and the fullness of her delight in life. they drink it in, big sparkling draughts of desert love. it's always said that you teach your kids how to be, but i find myself being schooled instead to not be fixed between the worries of dust under the couch, and the counters being dirty, and whether our bills will leave anything extra, i need to just give more fully of what i love, and drink more deeply of joy. i hope after all this learning, i've got something to give back to them.

language

2010-05-14T18:23:00.000-06:00

she has been trying to sign 'train'. it's a large movement, for some reason the fine motor motions come hard to her. sometimes they don't even seem to come.

but she communicated it to me clearly, along with loose approximations of 'bread', and 'help'.

she also can say a rough form of zaya. it sounds like this 'zsheeeya'. but we know she means him. that gives her three words, and only one she volunteers in a meaningful way. she can say 'mama' anytime she needs something, and 'dada' sometimes when she sees dave. i am guessing that 'zsheeya' will soon be the most used word around, though.

sneak peak into summer

2010-05-12T21:21:00.000-06:00

dave hung the swing for lia, and we had to sneak outside to try it even though the wind was chilly. someday it will be summer, and this will be the most familiar picture in our books. it will almost look like this too, except i doubt the grass will be this green.

i have two pendulum arcing dreamers tracing their feet against the sky, trying to catch a cloud, a bird, or an airplane.

i wish there was a swing for me. i'd like to find that freedom from gravity, from thought. where the only conscious thought is to push against the momentum, and race a little harder to see how high you can fly. to feel that breathless moment of weightlessness before you plunge back to the ground in a rush. and then, at the end, the decision to slowly stop or just jump off. i usually chose to jump. i often tumbled in the dirt with a grin and a scraped knee.

i wonder what i'd choose now. i hope i'm teaching them right, that sometimes jumping from the swing is the right thing, and that sometimes a cautious thoughtful step into the future is more wise.

please, please, please!

2010-05-11T07:35:00.001-06:00

i made the mistake of reading developmental milestones.

if your child is delayed, i'd advise you to not do so. all it does is reinforce the lacks.

it does nothing to celebrate the sweet face that brings smiles with a hint of bittersweet hope. it says nothing about the hands that reach for my face, the feet that curl and bounce with happiness over another tasty treat. it doesn't tell how she likes to follow zaya around, how her eyes light up at tractors, and daddy walking in the door. it's only a list, of things that someone thinks she should do. maybe she will do them, maybe she won't. it doesn't change the essence of liajoy.

the gap is still there, it seems bigger to me. in any case, it's not smaller. that's hard to reconcile with this little face. she is our delight, our hope, our songbird. you can't blame a songbird for not soaring like a hawk. they don't ride the thermals, they don't flap large strong wings, they just don't. songbirds are a different kind of bird. they sail into the air just above my head. their songs are sweet and fill the bushes with melodies. i wouldn't have her be a hawk, not for anything.

peace

2010-05-09T14:39:00.000-06:00

after a long day that has been filled with loving and many lung treatments, lia rests her head. she is still quite snuggly, not feeling quite up to par. so we cuddle a lot on the futon. it's supposed to be our 'couch', but somehow when we brought lia home from the hospital, it turned into an almost daybed. there's room for me and lia, and zaya to bounce in and out of the hemisphere with books and toys. i've placed it in the corner, and we can look outside at the juniper bush. we can see the mountains and the clouds that play tag with the peaks. we can see hawks soaring, tractors plowing, trucks driving, people walking the land.

if we can't be outside yet, it's a good place to be.

birds

2010-05-08T18:38:00.000-06:00

while we wait for the weather to be congruent with the sunshine, lia watches the birds. we've got a lot of them this year, because we have no dog. there's a nest just outside of zaya's window for cliff swallows. every spring they build it back up and hatch a nest full of babies. zaya and i love to watch them flit. their markings are like tuxedos of blue and yellow, and they soar low and high with joyful abandon.

this year, lia has discovered the birds too. she watches the finches, the nuthatches, the sparrows, and the chickadees eat seeds from the green stuff growing in our yard. i cannot properly call it 'grass', it's mostly weeds and thorns.

to the south, the magpies hop 2-3 ft at a time, i swear they do. they are so large and sassy. lia always signs 'more more, please' to them. i'm trying to teach her how to sign 'bird'. i'm in love, with spring, with this wide open space we have to call 'home'. i'm in love with the blithe spirit lia continues to show as she explores this world. i'm in love with the little boy who dances outside in the chilly weather, showing lia just how much fun she will have soon outside.

it may not look like spring, with the chilly winds, snow, and rain, but spring is surely here.

sick

2010-05-07T20:36:00.000-06:00

it's bound to happen, i was watching her for it. earlier this week, lia woke up with a cold. yesterday she quit coughing because she was too tired. that was my cue to call the doctor's office. she's got a teeny bit of pneumonia, nothing serious to worry about. we've got the antibiotics and more nebulizer treatments. i hope she picks up soon, i hate seeing her lay on the floor. i don't mind that she wants to cuddle with me, we have been doing a lot of that. zaya obligingly brings her toys to see if she wants them, we're just waiting this out.

at least we caught it early, i'm hoping it doesn't scar her lungs any more than they already are. they've begun to heal, and the longer we go without a serious lung infection the better her chances are.

hello

2010-05-05T21:37:00.000-06:00

sometimes i'm cuddling lia and it's night time. i'm tired, and so is she. her head rests gently on my shoulder, her hand has fisted my shirt. i kiss her head, and sing a little bit. then she tips her head back with a grin and looks at the ceiling. she smiles, babbles a few words, and then waves.

tonight, she did this again. i looked up too. she laughed and smiled at me, and then touched my chin and pushed a little until i looked at her spot. then she waved again. so did i. i figured that even if i can't see them precisely, that little spot of light means something to her. it was the right thing to do, lia waved one last time and then snuggled deeper into my arms. i sang a little softer as the night rushed into the room. the golden pink of the dying light made a cathedral from the songs i chose. i hope our company, was entertained by the joyous love of one little girl. i think they must be, they still visit her, these invisible friends.

pretty please

2010-05-04T16:37:00.000-06:00

when lia asks, she signs 'please'.

she does it so winsomely, we all laugh. her eyes are alight, she knows with confidence that we won't deny her her needs. often even her wants are met with a 'yes'. i hope to teach that trusting faith to both of our kids and see it grow into a vibrant relationship with our Father. for now, that means providing, loving, gently correcting. i've been lucky, lia has not needed much correcting yet. i don't know why. she has a strong will, but she also greatly desires to please. a simple 'no' usually has her listening. i'm thankful for her sweet and willing heart that listens to my voice. i should learn that for myself, listening carefully for the quiet whisper of guidance.

sass

2010-05-02T19:08:00.000-06:00

new hats seem to bring out the sassiness in liajoy.
i put on a hat, and suddenly she views the world from a whole new perspective.

i'm thinking that lia will be like zaya, willing to try any new hat.

it's a good way to explore how others feel, i've been told. it's a good method to help children learn to pretend, to empathize, to expand their horizons. i don't care overly much about that, i find enjoyment in their delight with a new hat. i love how they enjoy experimentation. mostly, though, i just think they are darling in hats. i love that they are happy. the learning, the experiences will come with time. i'm not relying on a hat to teach them all of that. that's my job.

inheritance

2010-05-02T16:15:00.000-06:00

daddy-sized yawns in a pint-sized girl.

pre speech

2010-05-01T18:14:00.000-06:00

we've been thinking about getting lia evaluated for speech. for a number of reasons not even related to speech itself. she doesn't chew well, doesn't open her mouth well for things, and tends to not be able to swallow well. however, she is really good at making the 'mmmmmmmmmm' sound lately.

sometimes she says 'mmmmmmmmmmaammmmaaa', drawing out the sounds very well. this is one of the days we ignore the negative and cheer the excessive 'mmmmm'ing.

brave

2010-04-30T10:41:00.000-06:00

as much as she falls, she gets back up.

i should be so brave.

reading

2010-04-29T22:39:00.000-06:00

zaya reads to lia

he can read quite a few words, and he loves to explain to lia what's going on in the story. i just like seeing their heads together as they look at something. of course there are equal parts looking at the book and trying to take it on lia's part. zaya spends half of his time reading, and the other half protecting his book from lia.

a little bit later in the day

2010-04-28T17:38:00.000-06:00

later in the day, we had 3 bouts of hail.

like a surprise, it came out of nowhere. i'm here to report that hail the size of peas hurts when you get hit with it. this is especially true when the winds are going faster than 40mph. these speeds are according to the weather channel, since i don't own a speed gun that will tell me how fast the wind is blowing. i do love this strange and spare land. it knows my name.

spring, high desert style

2010-04-28T12:36:00.000-06:00

we live in the desert. it's 4500 ft in elevation, and we are surrounded by mountains. this means our spring is fleeting. it's a myth, a rumor, a sometimes mirage in the diminishing power of winter.

we have had some nice days where the sun feels like a benediction. mostly, though, we have had cloudy and rainy days. every so often, from the west will blow up a strong storm. with 50mph winds, it brings clouds and dust. we sat and watched out the windows and admired the clouds as they swept along.

as they came along in waves, i noticed that there were sheets of white coming. snow, in bursts began to flood the sky. visibility dropped, and the light was a purple glow. there were 5 waves of snow in all. we watched them crest over the house, and then move on towards the desert. the green of the almost grass was so bright, the purple flowers hovered like a secret in between the flakes.

people complain about these springs, their cold winds, and snowy weather. how can they? it's magical, how the wind can make a snow globe out of my backyard. it's a surprise that never fails to bemuse me, how the horizon just drops away, and i feel cradled in God's hands. it may be lonely out here, but it's God's country. He's leaving love notes scattered through the yard. all i need to do is run barefoot in the snowy purple flowers.

and that's what zaya and i did while lia napped. soon she'll run with us. dave will stand inside, shake his head, and then he'll smile.

sweetheart

2010-04-27T22:43:00.000-06:00

she's trying to walk more these days. a hesitant standing up, a step that stumbles. there's a benefit to her learning to walk when she's bigger. i'm tall, and i don't have to stoop as much to hold her hands. if i hold her left hand she leans hard on it and walks fairly well. if i hold her right, she kind of crumples. so i hold her left and we walk. sure, i know i should hold her right hand more and make her work, but i'm enjoying trying to stroll. i figure her balance could improve, her desire to walk more could also increase with success.

i think we have an almost-walker. sounds kind of cool to me.

magic tricks

2010-04-26T21:45:00.000-06:00

she put her hand in the cup, waved at dave and i.

we laughed.

and then she started doing it over and over. we couldn't stop laughing. i love these moments, when the sweetness over runs the room. much like the soft yellow and pink light of the setting sun that spills into the room. it fills and smooths away all the rough edges that may have been bumped during the day. each sore spot, each hurt, each disappointed heart, is somehow brought to peace at the end of the day.

color

2010-04-26T17:27:00.001-06:00

when the sun is higher in the sky, the warmth from it begins to heat our yard.

out of the wind, there is a nice calm spot. the sun bakes down gently this time of year, as if to apologize for the chilly spring winds that blow.

we've been watching the dust devils form in the fields, and the rains fall on the mountains. every other day brings chill winds, snow, or other remnants of winter. winter is a hard one, clinging with withered fingers to the land. but the sun still comes out, and brings a warm yellow light to the yard. the grass is green, there is color here. and our little bird is enjoying it all.

brother love

2010-04-25T08:49:00.000-06:00

i love to see them loving each other.

daddy

2010-04-24T23:06:00.000-06:00

daddy is king in this house, the bringer of treats, smiles, and laughter. after a long week apart, everyone loves to have him around. i couldn't ask for someone like dave and know how to express it. he has a depth of love and patience that i don't. when i feel edged out with being needed, he's there with a book and a lap ready to accommodate both wiggly children. he picks up the house, and even folds laundry. i wish i could hire him to be around all the time.

he is my soul-mate, and i can see how he is more than just the daddy to our kids. he knows their hearts, and challenges them to reach deeper, further, to grow more.

we like him quite a lot, this other half of my heart.

hope

2010-04-24T22:13:00.000-06:00

this is what hope looks like. a lone dandelion blooming in the middle of a rocky and sandy ground. a ground so hard that i've given up trying to turn it into yard. we park our cars on it instead. these small love notes from God saying 'hey, i still know you by heart', they keep me going. it has been a long year, but spring is coming. in awkward fits and starts, and there should be purple coming soon, to another thorny and rocky patch in the yard.

hope. it's the thing that feeds me, and i feel at times that i am starving.

blue

2010-04-23T20:53:00.000-06:00

tonight, lia, zaya, and i drowned our sorrows in the amazing blueness outside the windows. everywhere we looked, there was the deep blue of rain, rain, snow, thunder, and lightning. it passed over us, like an afterthought, a whimsical reminder of how other areas of the country are drenched in rain and bloom easily without effort.

here, we live in the high desert. each field, each farm is carefully and deliberately cultivated and irrigated. canals have been etched deep into the surface of this lava rock landscape. the water runs from reservoirs high in the mountains to feed the thirsty ground. the canals ripple and dance, reflecting back the sky, and it is good. it is good to see the sprinklers turn on. they cast arcs over the land, and throw rainbows casually into the midday sun.

i've been looking for our canals, our spot of refuge in the desert. lia keeps falling, straight backwards for no reason. i don't get it. i hate seeing her hit the floor. i wish we'd carpeted the entire house, instead of doing a stamped concrete floor. i worry about her head, knowing how hard she hits the floor. i can't catch her every time, but i try. my bruised elbows and knees attest to this fact. i worry that each time she falls, she is doing more damage. she cries, she gets hesitant about standing and sitting. she clings to me at times, unwilling to risk another hurt in this world. i haven't the heart to tell her that pain is part and parcel of this life. i feel like she's had more than her share of it already.

so i hold her tightly, i measure my cheek against her silky curls. i kiss her again, and let zaya climb into my lap too. there's not much else i can do.

christmas and beautiful

2010-04-22T20:52:00.000-06:00

christmas loved beautiful
with all his heart
every day he leaned close
to show her
all the wonders
in the world

he'd carry her with him
if he could
instead, he brings her
every shiny thing
just to see her smile

stepping out

2010-04-21T20:08:00.000-06:00

lia took independent, but forced, steps today in PT. part of me was so excited to see it. the other part was crushed that it had to happen here, and not at home. at PT, instead of with dave around to see them. it hurt to see her right leg drag, and swing around to move herself forward.

yes, she walked, but it wasn't by her choice. we push her to stand, stand, stand. her balance is continually off, and she will topple one way or the other. i'm tired of hearing 'Neurological Impact', but i know it's true. he put some weights on her legs, and suddenly lia was standing a little more normally, and taking steps that were a little more like regular walking motions. sometimes it seems like this never ends. the stiffness comes and goes, so we're not sure. no one is sure. i'd like a few answers.

bright

2010-04-20T08:10:00.000-06:00

some days i wonder what our future holds. sometimes the details feel like a flood. trying to hold on to any hope can become difficult. i see the days line up in front of us and they are numerous. appointments, trips to therapy, doctors here, doctors there. will we find answers? are they worth the search? then i look over at lia and she's doing something silly.

her eyes light up the room. she's doing me the favor, with her lack of understanding. she doesn't realize the labels attached to her are probably permanent. she just knows that the world holds delightful things like squishy hacky-sack balls, magnets, and other lovely toys. with a smile like that, i need to try harder to remember that labels may come or go. i can't let them tarnish the things that i have. it's not like they change anything.

playmates

2010-04-19T18:27:00.000-06:00

i love that now lia is old enough to really be into zaya.

he's always been interested in her, showing her things, bringing her things.

but now comes the sweet part, the companion part, the copy-cat part, the tag-along part. she watches him with her heart in her eyes, waiting for the chance to catch his attention. she watches everything he does with interest, and works so hard to copy him.

invisible friends

2010-04-17T20:25:00.000-06:00

i am happy to discover

that lia's invisible angel friends are outside too.

i hope we have many more gentle and sunny days for her to enjoy

horizons

2010-04-16T21:08:00.000-06:00

outside, and loving every minute.

i love the expansive sky we have out here. the mountains tower and fall away in the distance. west, north, south, we have mountains. numerous ranges that we long to explore. somehow they've always eluded us, but not this summer.

we have waited so long for this moment. the one where the sun kisses lia's face, and she smiles back at the wind. one way or another, this is our summer.

escapes

2010-04-15T20:32:00.001-06:00

we're able to be outside.

we can't get enough.

and the tractors are out in force. lia and zaya are much cuter to photograph, though. they're watching another eight-wheel tractor move down the road, the disker jingling. it's followed by a large earth mover. i think they are our neighbors, they tooted and waved.

of course, anyone who lives within 10 miles of us we consider neighbor. because people care about each other out here. i like that.

trains

2010-04-15T18:30:00.002-06:00

being outside is freeing.

there are trains to wave at. each one rushes by, important in itself as it hauls freight from one end of the country to another. someone's dreams, someone's plans are on that train. it moves by so quickly, with a few long whistles to warn everyone from the crossings, the miles of train cars are quickly gone. lia has become more aware of the trains, crawling quickly to the door every time she hears the whistles, the rumble of their ponderous weight. this is the first time she's been outside, and strong enough to be interested in them going by.

she even stood.

i've got the joy

2010-04-14T23:21:00.000-06:00

zaya and i like to sing. lia likes to hear us sing. sometimes she tries to sing with us. sometimes she just laughs.

and we love her laughing. sometimes that is all that needs to be said. her happy and joyful nature gives me the reasons to get up sometimes. it affords me the strength to keep going. it lets me lay aside the worry and the exhaustion that keeps sneaking up on me.

little girls and legos

2010-04-14T10:46:00.000-06:00

i have my legos

zaya has his legos,

and dave has his legos,

and now lia has her very own set.

diagnosing love

2010-04-13T14:03:00.000-06:00

from c

spring has been etched into the sky, with its pale orange sunsets, the deep whites and blues that trail from flattened clouds playing chase among the mountains. our yard is green, for now, but will soon shrivel and turn to thorny, dusty, tumbleweed scrapped space. it's just how it is out here sometimes. mostly because we have not planted grass, and i refuse to water the dust to feed more thorns. this year, though, i will have to choose something. stasis won't work any more. lia might be walking, but more likely will be crawling. we can't have her crawling on thorns.

i think it's safe to say that i like the new PT. he is slow, calm, methodical, and listens to me seriously. lia approves of the games. there are no cheerios to thread, no coins to put in slots, just a large gumball machine that takes balls, some blocks, and some rattles. he won her over with patience while i again wrote out, spoke of, and relived the day of her birth and all those that followed. the inevitable questions will always arise in my mind.

did i do enough? wait too long? try hard enough? take enough precautions? i checked all of the boxes that supposedly will explain who lia is and what she is going to be capable of accomplishing. she crawled around, laughed some, bonked her head, and did not care. each time, though, she reached back for me, came back to me, smiled for me. she doesn't think i did anything. i should remember that.

her crawling was off. before i even mentioned it, he noticed. her gait is odd as well. we talked about her random falling and came up with no real conclusions. he noticed alternating stiffness and looseness in her hips, along with some lack of coordinating muscle tones in her legs.

he mentioned cerebral palsy.

we've entered the arena of permanent impact on her. nothing is formalized, but it is all daunting. until a child like lia is 2 or older, these are often not even considered relevant. this is the first time any of it has come up. until this point, we've always been reassured that nothing is wrong, that nothing is there that cannot be outgrown. this was true, the brain of a baby is so malleable. it can regrow connections like mad. now, though, it seems more apparent she has impact.

i refuse to say she is brain damaged.

i've done my reading since, and begun to understand that it does fit her. that realization, that label is heavy in my head. as i read, i look at her and her funny face. she smiles at me, she reaches for me, she stumbles, but tries. it seems like her problems for now are mostly centered on motion and motor control, but we don't know what the future is.

i hope i never hear again the question: 'is she all there?' or any other comment about her intelligence, her mental state. to me, to dave, to zaya, she is all there. no matter what, lia is all that she is. by virtue of living, we all of us are broken, flawed, impaired. i realize that she 'looks' like nothing is wrong, but this is probably true of most children with special needs.

there's no marker, no secret handshake, we just get dropped into a different world. learning to navigate what i thought i was used to will again take time. time to assimilate the new data, decide if pursuit of formal testing is needed. above all, though, this changes nothing in our world. we love her, fiercely, deeply. like the rain on the mountains, it runs into the ground. surfacing miles away in quiet springs, they bring green to the desert. loving lia is my oasis.

spring

2010-04-13T13:34:00.000-06:00

this is what spring looks like. the white from the clouds spills into the not too distant mountains, more snow is falling. the sky is bluer now, the promise of summer. the tractors are out, they go down the state highway with the same deliberate thunder that the cows and sheep do. we love to watch them all go by, the world feels like it has come to our doorstep.

they're busy plowing the brown into green. they're planting, they're getting ready for the canals to burst with water. i'm ready too. spring is our gracenote. we are ready.

off width

2010-04-12T13:23:00.000-06:00

there's a kind of climb called off-width. the angles are different, and you work at looking at the problem in a new light. sometimes it's an inner corner, sometimes a fin of rock that leans away from the main face. either way, the rope is all you have. jamming a fist into the crack, i feel my muscles expand and i lean back. somehow this holds me up. i see the ground below, and everything looks different. but each time i let go, i confirm with dave that it really will hold me. i trust him, i trust the rope, i don't trust my own strength. trust will get us through these days.

as i watch lia climb things, i realize that walking might not be a big deal. i know this, i know crawling isn't so bad. i watch her and i think even if walking is an issue, climbing might not be out of reach. i want to show her the high places. i want to sit with her at the top, and look down on the wings of a hawk soaring into the sun. i want to coax her to step backwards into the embrace of the wind, lean into the rope and be lowered down until she grows into her confidence and rappells herself down.

stuffie love

2010-04-11T11:21:00.000-06:00

and now, a cheerful note from our sponsor, liajoy.

lia loves her stuffed animals. when she sees a soft fluffy anything, she waves her arms and starts laughing excitedly.

she hugs as much of the soft thing that she can. sometimes, it's the whole animal. sometimes, like the time we ventured into Sierra Trading Post and saw a toy black bear bigger than dave, it's only a leg that she cuddles. whatever she can manage, though, she cuddles with fervent delight.

with this much to smile about, it's hard to remember the bad news sometimes.

feet

2010-04-10T22:50:00.000-06:00

someone reminded me of a verse 'How beautiful upon the mountains are the feet of him who brings good news." Isaiah 52:7. lately, the news we get often doesn't feel like that to me. i hate every new appointment, i feel like i am bracing for more. sometimes it comes. sometimes it doesn't. this time we got more news, more information. it is new, it is scary, it is hard. this is the first permanent diagnosis besides developmental delays, hypotonia, lung disease, and hypothyroidism. that feels like a mouthful already. i suppose this one, cerebral palsy, is really just a bucket that almost everything else can go in and be explained more easily.

it still feels like another loss.

but these feet, they rush to help lia. lia's feet rush to find zaya. they both race towards dave and i. hands to the ready for hugs and love, smiles, tears, security, are all found in the speed of these little feet. lia's feet may struggle to hold her upright, they may not lift as she walks, but there is still good news in her feet.

peas and carrots

2010-04-10T18:51:00.000-06:00

she's eating again, and sleeping. it was a long 3 months of adjusting to the new dose for thyroid replacement. the endocrinologist swore up and down it was a moderate change. he also recognized that i know her better. next time i can take my time adjusting her. we've passed the danger zone of absolute necessity in keeping her doses perfect. that gives me time, and breathing room.

lia and zaya like their vegetables. lia likes brightly colored ones, though. peas and carrots are her favorite, and she eats them like candy. zaya loves green beans. i love feeding them both. i've been trying to buy more brightly colored things. lia loves to taste red peppers, oranges, broccoli, carrots, anything bright. she also likes jelly beans, as i found out when zaya gave her a few.

angel girl

2010-04-09T15:18:00.000-06:00

when we knew who lia was, we started calling her 'angel girl'. i still call her that at times.

no matter what we are facing in the days to come, she is our angel girl. i can't put it any more simply than that. there is no damage when i see her, there is no lack when i look at her face. she is ours. she always will be. we have entered the critical phase, where the progress she makes determines long-term prognosis, diagnosis, potential.

don't ask me to sum her up, though, by what she can or can't do. we sum up lia in her laughter, her exuberant grasp of life, her enjoyment of chase the kitty, her dislike of being left out. lia may have struggles, but her name is lia, angel girl, beautiful, and not 'disabled'.

let me out

2010-04-08T15:16:00.000-06:00

she is just about tall enough to make some real trouble. it is so obvious where we would rather be. we are so ready to be outside with zaya. wind or no, if the weather could just warm up. i swear, we'd be there. it has been too too long since i've been able to be outside on a whim. eat outside, breathe outside, live outside. i miss it.

i miss it. i miss the taste of the dust and diesel in the air as the large 8 wheel tractors rip up the winter dust to prepare for planting. i miss the metallic chill from the west wind as it crawls down my neck. i miss chasing zaya in the yard, climbing old farm equipment, mucking in the garden. i miss it all. as the yard has its small heyday of green before the long scorch of summer, i see lia becoming more and more fascinated with the outside world.

it is almost time. someday soon, i will turn around to a gust, a breath of air and a giggle. lia will be scampering outside, free, and giddy. and i will follow barefoot into the sun.

smiling

2010-04-07T06:17:00.000-06:00

i so want for her to see only the good in the world.

i feel like she's saying 'don't let me down'

so i'll try a little harder today to be patient, positive, cheerful, talkative, and hope that it's enough. that somehow the changed person i am won't dim her outlook on life. my family used to laugh at me and call me idealistic. because i wanted the world to be a better place. these days i'm out of energy to believe it will be better. i worry that people will stare, make rude comments, and dim her loving look at the world. i want to hide in the desert forever with both the kids. i want them to never hurt, or be hurt.

i've left behind the easy answers, the simple ideals that used to make the world a solid black and white array that worked according to the rules. i'm finding my way, though, into a faith that i hope is deeper and stronger. i hope that i can pass that on.

mischief

2010-04-06T15:22:00.000-06:00

miss liajoy now has enough determination and agility to find what she wants.

i turned around and she had somehow reached the cheerios. she opened it and helped herself to fistful after fistful. and i let her do it while i cooked the eggs.

somehow she found the container with the brown sugar in the cabinet. a girl after my own heart, she approves heartily of the taste.

if i'm not careful, i think she might walk off with the keys.

beautiful

2010-04-05T23:15:00.001-06:00

with secret smiles,
she still talks to angels

they've hidden their secrets
throughout our home

and Beautiful,
she knows them all.

hats

2010-04-04T21:12:00.001-06:00

lia has discovered that things laying around can also be worn. she tries the caribiners, the loops of rope, the socks, the shoes. hats seem to be the easiest, so she tries those most often.

and she tries over and over to do it herself. after a while, she signs 'please' to me, and i help her. i hope she kicks this cold she has, it's wearing her out. i'm trying not to worry. we do the breathing treatments, and her color, and her energy level remain good. so i'm just waiting to see how she does. maybe this is it, maybe this is her corner. she will get sick like normal kids, and then recover like them too.

kitty, beware

2010-04-04T15:17:00.000-06:00

lia likes salto. salto has recently begun tempting lia, and sleeping in the toy area. i suppose it's because it is so warm over there. between the wood stove and the sun streaming in the windows, it's the perfect place for kids to play. the mountains, the open sky, the tumbleweeds all leap into the room. we love being in this room, even if it does feel like a playroom more than anything else.

inevitably, lia discovers salto and comes crawling for her. salto stays until lia gets within reach. then, depending on the day and her mood, she either waits for lia to pat her and lovingly maul her, or she sidles away. just out of reach of lia, she moves to another spot. lia looks around for her and shouts with laughter when she spots the cat.

my cat has always been special because of the way she was given to me. she was my christmas present, with a ring on a ribbon around her neck. all the promises he made to me that day have come true. not in the ways we thought, not with ease, not with simplicity, but they have come true. there have been perhaps more tears than laughter these years in the desert. it has burned away so much of us, i sometimes wonder what is left. then i look around and i see that we have each other, we have two awesomely perfect children who challenge the very ground we walk on. i hope we grow stronger together, that our faith breathes in and out like the tide, and that still we find that God is faithful.

hope and surprises

2010-04-03T09:40:00.002-06:00

last night my hard drive failed, and it failed hard. right as i was going to back it all up. something i should have done a LONG time ago.

after a lot of poking and prodding, we've decided to send it to a data recovery house and pray like mad it is not all lost. if it is, i have lost not only all of my photography, i will have lost every picture of zaya and his beautiful smile, lia's entire journey, and all my writings.

if you felt like saying a prayer, a good thought, please do. it feels like i have lost all the pieces of my heart that i was saving. i live inside the computer, i need to put a lot of my thoughts there or else my head becomes very very crowded. right now, i have multiple images, data plans, structures and their numerical properties all vying for first place in my head. all the things that i moderately obsess over when i have the computer are now taking over my thought processes.

i should have backed it up. this year has been a wildfire raging through our lives. we have just survived, burnt, exhausted, but survived. i need our data to survive. i need to know it's not all gone. i am hoping it is not too expensive to recover it. at this point, i feel like there is no price to the pictures, the memories, the proof of what we have lived. my photography is part of my soul, to me. the pictures i have dreamed of, the things i have seen that i want to treasure. if they are gone, how is there proof i ever did these things?

how will i show lia and zaya what they've grown through?

surprises

2010-04-02T15:20:00.001-06:00

sometimes the wind comes down from the mountains, and rips across the flats. it reaches out and smashes the very thought of standing into the ground. it flails at the trees, and scrapes bare the ground, driving the dust in front of it like sheep to be herded. the dust blankets the sky, and chokes the breath. it howls, it swirls, it drives the tumbleweeds relentlessly, and even a trip to the mailbox becomes a push against the wind's power. it is easy to feel very very small.

one year, maybe 2 years ago, there was such a wind. it brought us this fabulous soft fire engine tent. calling around, no one knew who it belonged to. our nearest west neighbors are more than 1/2 a mile down the road. it wasn't their's.

so we kept it. we played with it. now lia enjoys it with us. i hope someday the wind brings more surprises like this one. we could use a few. so could everyone, i think.

my girl and i

2010-04-01T15:55:00.002-06:00

last week dave took these of lia and i as we watched tractors plow, and the wind push a few tumbleweeds across the way. that wasn't today. a nicely ordered day in which i somehow matched lia's cute purple shirt, and the light fell soft and syrupy across the yard. that wasn't today. today was the kind of day where the light ached into the windows, and we tried hard to be happy, to be real. this 4 days at a time gone for dave is hard on us all.

today was a snapshot day, the kind of day where you're still wearing the ratty old pajama pants at dinner time. the kind of day where it creeps on by, stilted, awkward, and long. it's the kind of day that i found myself short on patience with life. frustrated by the clouds in my life, feeling limited by the things we have to do every day.

but suddenly it was dinner time, and there was a funny song on pandora. and i picked up lia and started whirling around. i clapped hands with zaya, as we jumped back and forth. we danced, we laughed, we found a sweet spot in the day. it was as if the sun had come out, golden and heavy, after a long dark night. it was as if those limits had lifted and we were just normal people. and like normal people, i would have been embarrassed to have a picture snapped of me at that moment. that moment when life was so overwhelming that we laughed. that moment when my hair was a mess, and my shirt had bleach stains on it.

the laughter, though, the dancing, they were priceless. a friend gave me a tile that had some words painted on it. i find them apt, and you've probably heard them before:

'life isn't about waiting for the storms to pass. it's about learning to dance in the rain'. lately the rain has beaten us down, it has drowned us. i hope we can find our way out.

kitchen chores

2010-03-31T22:57:00.001-06:00

lia has a lid obsession that almost equates with her opening and shutting obsession.

so everything that is within reach is non-breakable, fun to play with, or not important enough for me to worry about it.

it also makes it easier when zaya unloads the dishwasher.

i don't know who started this, but i venture zaya opened the door and then lia popped inside to see what was what. i love seeing her discover zaya's world. i love seeing him re-discover the world through her eyes. actually, we all have learned a lot through lia's life, her eyes, her ears. life is sweetest when you drink slowly.

so a cup was cracked not long after this picture. it's not that big of a deal. there were no shards, it was an old cup, and frankly worth the price of letting kids run free in the kitchen. there are days, that they get out all the safe appliances and play with them. zaya measures, lia obsesses with the lids.