family pic

family pic

Tuesday, September 30, 2008

what i carry

art credit roberto damico

i think more than a few of you can see this tremendous weight that i carry in my eyes. i think some of you are wondering why .... saylor seems to be doing so well and she is. but that being said the timing of our lives is proving to be a challenging obsitcal for which i am working on a pathway through. as the seasons change so do our lives with saylor recovering and accepting a new routine of life, one that requires cleanliness to the extreme, precision, and good perspective of time, with school and all that brings for two normal healthy children and one who is challenged. initially when saylor was born we worried about the future, her school future even. the social and academic aspects she would face. as she grew and developed our fears and concerns subsided with time and also with the development of a bright and brilliant child. we had forgotten what we could potentially face so in some ways these now rearing challenges have smacked us in the face with learning and social adversities. of course this comes with a thick silver lining, that i am deeply grateful for, of a great support system and a kindergarten class full of children who treat saylor like a celebrity! economic times are even wearing on us! in fact that are wearing down hard as we see an unexpected decline in insurance construction work and an expected decline in floral design work. we know that not just the season is changing. change .... a challenge even for the best competitor! this is of course only a few of the things that weigh down .... those that seem the most fitting to share.

Sunday, September 28, 2008

tricky treats

I have been cravin a little seed. for a while actually i bought a pumpkin almost a week ago and just got around to the laborious work today. pumpkin seeds are actually really good for you and i think they are the BEST of the seed eating varieties. but its a lot work. it seems like you get a lot of seeds out of a 'kin but often time you go through all the work for them to be gone in mear minutes. none the less, pretty tasty! and worth it after a week of mustering the energy.

1. carve a top in your pumpkin. 2. take it to the sink and fill it with luke warm water so your hands/arms dont freeze 3. roll up your sleeves. 4. seeds should be floating up. pile them into a strainer. 5. scrape the pumpkin and put in some labor for about 20 minutes to get every last seed. 7. wash the seeds while in strainer, toss them gently, sticky stringer 'kin will stick to you put it to the side or in the gcan. 8. put 2 cups of water to 1/2 cup of seed with 1 tb coarse salt and boil.
9. strain seeds 10. lightly oil a cookie sheet (i use coconut oil i believe in its qualities) 11. spread seeds out on pan and sprinkle with some sort of flavoring devices! herbs ... WE. 12. cook on 200 for however long you want 2-6 hours you cant screw this up ... serious. 13. remove and enjoy!

next i was craving this

but these two require work and now i realize why they are so $$$ at the store. but i cant afford to spend my failing financial dollar on caramel apples and rocky mt choco fact or anywhere else for that matter. we love apples, been going through them like mad. covered these with the sheet caramel and then smothered them in melted white choco and dipped in crumbled oreos ... again a lot of labor .... for a savory treat. i guess you burn more of the calories you consume this way. its a good thing any way you look at it i think! cost about $2 an apple when its all said and done which still is not CHEAP!

how we doin? you ask. well saylor seems to be struggling with another infection even though she has only been off anti's for a few days. my guess is she will go back on this week. she is fine one min and not so fine the next hour. its strange we arent sure whats going on. other than that she is doing well. enjoying school and all her new friends. the kids have been very kind and accepting with her. that has been a releif!

the other two nibblets are strong and amazing as always!

nate got the SWEETEST new glasses. i will post a pic soon. they are so rockin he wore them to church today. it was the funniest day at church in a while. he got lots of great looks. some people even asked is this a joke or is this for real. he just said yeah there real glasses! anyhow i will spill the whole hilarious story on this as soon as i get some pics ... without pics its not worth it.

we are looking forward to getting through a very busy week!

Thursday, September 25, 2008

hunting for ghosts inside or out?

what? you say. well first let me tell you how i know stock is nate's clone ... they went hunting during the week together at our cabin and had this conversation ...

stock is looking binocs and some other equipment over. he notices that the binocs have the word "outdoors" in their brand.

stock "dad, why doesnt all equipment have the words outdoors in it?"
Nate "i dont know, why?"
Stock "because you dont hunt indoors."
both "LOL!"

yep he is nate's clone ... nate would say something like that. i am just surprised stock thought of it before he did!

now to another halloween decor project on the thrifty dime. when i was young my mom made fabric starch ghosts with me one year to hang in our huge tree out front for the season. we havent made them since, and i have wanted to ever since. so this was my year, i made them with my girls. this requires white sheets of some sort - we had two lying around the house and because we cut up the edges to be "spooky" you can use a fitted sheet as well and just cut off the elastic. you also will need a gallon or so of liquid fabric starch. i bought 2 jugs at $3.75 a piece at macy's grovery store. then you will need some sort of structural shaping support. what you make it out of should vary depending on the size you want it to be. we used old bar stools with upside down tomato cages on top of that. we took two of the prongs that usually insert into dirt and made arms (easy to bend!) then the third we bent straight down as to be out of the way. then we placed a large ball in the ring of the tomatoe cage for the head. simple as that. pour fabric starch straight (dont dilute it doesnt work well if its not straight!) into a 5 gallon bucket and immerse a sheet. do not ring it out just pick it up sopping wet with starch and drape appropriatly over structure to dry. this is best done on the grass where drippings dont matter and have no need to be cleaned and on a sunny not windy day is also recommended. took several hours to dry. then remove from frame and tie fishing wire around neck to encourage head shape. i attached a safety pin to the crown of the head and hung with fishing wire and safety pin. the end effect ..... SPOOOOOKY!

outside tip - when hanging outside be careful to not hang where ghost could be rained on, they tend to get a little pissy about this as it ruins their form! also sercure with more then fishing wire or in some sort of manly strong fashion so that the wind does not carry your ghost away to another house. this look so great in large trees! we dont personally have any of those .... dangit!

Tuesday, September 23, 2008

Sunday, September 21, 2008

o'brien tarantula produces off spring ...

and in our perfectly spooky black chandelier no less ...

ok so this is really halloween deco project #3. It will cost you about $1.25 that is if you have a perfectly spooky chandelier already. this is in our entry way so its really the first thing you see when you come in the house, if your paying attention that is. fake spider web bag should carry you a long way, thus the 25 cents. i figure more or less thats what about how much i used. you have to be good at stretchin this stuff to make it look so authentic so practice a little ... i had a hard time finding spiders that werent rings that were still small so ultimately i ended up going with spider rings $1 at the dollar store or anywhere else actually. (you will get a few orange colored ones as well but for a $1 you cant be too picky right?) i cut the ring parts off with small wire tweezers (like for jewelery making.) then i affixed them to the web in a line like pattern that continues across the wall around the corner and down another wall as if they are headed or coming from the basement. easy, fun, spooky, cheap, and so perfect for this house full of gothic tarantula loving people. is there an abreviation for spoooky laugh? like SLOL?

as for a family type update ... nate and i are both terribly sick. nate never gets sick so i know this bug is/was a strong one. i am sure we aquired it from the wee one who we still let sleep with us every night even though she is 5, taking turns cuddling and kissing her and holding her gets us (ok usually just me) sick if she is sick. what doesnt seem fair is that she got over hers in like 2.5 days. nate and i are struggling. the other two kids are perfectly healthy but pretty bored considering mom and dad barely get out of bed, i am working hard to keep them pumped full of good vitamins to keep them from getting sick, as well as pumping us sick ones with them to get us over it fast! we are hoping that by tomorrow we are at least better enough to go about daily activities without feeling like our heads may explode!

Wednesday, September 17, 2008

mini halloween candy bar

ok so enough whinning. its now the end of another long day at home with a sick kid but after reading my post from this morning i just think ... thats enough! positivity and not complaining is the answer so please excuse my momentary mental break.

ok so here it is deco for hallo #2. this is a little mini halloween candy bar with darling labels courtesy of martha stewart! you can print these labels here. as we already know i have a plethura of vases so i just took 2 i really liked (for one i didnt want more candy sitting in jars then two varieties and i also wanted to be thrifty of course!) and then i coated the back side of the printed labels with modge podge (if you dont know what this is, you must discover this wonderful versatile dry's clear glue) then stuck them on the vase and just painted more glue over the top, around the edges, really everywhere. better then a sticker!

a sample of my inspiration ...

i will even make it a little easier for you ....
a little bit o'goth
deadly morsels = black jelly beans
witches sticks = black and white candy cane sticks
twisted treats = black licorice sticks
dreadful edibles, devilish delights, & rotten sweets = could be about anything black

a sweeter side
pretty little pumpkins = gummy pumpkins
tempting twists = pretzels, chocolate covered is best!
sweetest swirls = white/orange striped candy cane sticks (like at see's candy etc...)
good witch gumballs = orange &/or black gumballs

not long enough

upside down is something we gravitate to quickly unfortunately, its just the nature of the beast we fight. for the last few days saylor has been a bit .... sinusy, shall i say. but it appeared that she was suffering from allergies, like most of the other members of her family do at this time of year. she also has been unusually cranky for the last week but i had assumed that was caused by the new change of going to school, perhaps a little over stimulation, and being pretty tired after all that hard physical work of getting around the school and classroom.

there has been a little boy in her class sick since she started school. i have been praying that she would not obtain his illness. the teacher has him as far away in the classroom from saylor as she can get him and has been very supportive and taken all precautions to keep saylor healthy. i struggle with anger when it comes to this subject. i dont understand why if your kid is sick why you send them to school or church, because it inconveniences you? i just dont get it. it jeopordizes the health of every other kid there. what can i do but hermit my child, thats not fair.

so yesterday within only about an hours time between me cathing her and me checking on her in her room and touching her again she went from a normal temp to blazing hot, pink skin, bright red lips, lethargy, etc etc .... she quickly got sicker and sicker over the next few hours despite the motrin i gave her. she kept saying her ears hurt so we were thinking ok not allergies and she must have an ear infection with some sort of cold she picked up from school *ie little sick boy. so we decide that we should take her in to after hours vs waiting till morning. what the heck .... we have met our out of pocket anyway. so we head on down just to discover that her ears, throat, nose, etc... all crystal clear. either allergies or mild cold. still did not solve why she has such a high fever so we did a UA culture and sure enough she has a UTI. so to the pharmacy late then to get an icecream and ruin my own new found health and back home to administer anti's and more tylenol/motrin. we gave her allergy medicine to see if the cold stuff would improve so we could determine what that was all about. and nodda. my guess is she has a cold from school right on top of a UTI. her poor body. she has gone from doing so well and being so happy to being sick so fast.

i am so frustrated that she made it through only one week of school before aquiring something. i know this has a lot to do with her little weak immune system but its still frustrating none the less. i wonder how often she will even be in school this year while her body is working so hard just to overcome a new bladder and healing. i also am so disapointed that the UTI's followed so closely to surgery. i feel helpless.

the only thing i can do for her is what i have always done .... and maybe just a little more since i went to the health food store and picked up some cold season musts along with probiotics, immune support, and urinary support suppliments. we started all that last night and i hope it just gives her the extra boost she needs to get better!

Tuesday, September 16, 2008

reflection and inspiration

Today i was going to post another halloween craft ... until i woke up. it didnt feel right. i wanted to share with you the world the immense amount of joy that has flooded through my body since sunday night and share some insiration things with you. i know i have gotten so mushy!

Sunday evening i was cathing saylor in preperation for a bit O family time. suddenly i looked into her face and noticed the things i love about it, her soft, flawless, almost translucent like an angel skin, her darling jawline that creates the cutest reese witherspoon chin, her gorgeous blue eyes that resinate wisdom and the lashes that frame them, and last but not list her ever knowing smile. i realized that not so long ago i had feared that i wouldnt be able to look into this face much longer. the wave of rememberance hit me, the recollection of my deepest fears suddenly came and then evaded just as quickly as i found my self stunned that i was indeed looking her, and she was smiling and she was happy, i had not destroyed her after all! it was an ocean deep feeling of gratitude. i am trying to carry it with me for as long as the wave will allow. as we come out the end of this ride i have been reflecting on who has inspired me. lots of friends, family, and loved ones. but two that really stand out to me are for the most part strangers going through their own tragedies, and they are doing it with nothing less then perfect grace!

this is ky. she has VACTERL i encourage you to visit her family blog here and read all about her because an explanaition here seems daunting. Amber's writing is real, raw, and eloquent and something i can identify with. i have a deep respect, admirition, and love for amber, ky, and their family even though we are many many miles apart and have never met. she has inspired me to stay strong and to continue to pray for others, to be aware of who is experiencing so much more and that they are handling it. i have so many thoughts about my relationship and how strengthening it is but i find myself selfishly wanting to keep them secret and sacred. visit their blog and let them inspire you.

second is this blog ... read here. & of course this one.
thats right i am jumping on the nie nie train. actually i have been riding for some time now. what an AMAZING story of how the blogging world connects us, uplifts us, encourages us, supports each other and on and on. these two women are nothing short of heroic! i can only aspire to be who they are. not a day has passed me by in weeks that i havent thought of this family and of stephanie. i wonder if she will ever comprehend how far reaching her spirit has ventured, how many people she has inspired, what magical things she has done. she must seriously be "the queen" in heaven!

next is a book that i continually draw on in hard times ...
if you are suffering this book will lead to unloading your burden! that is if you dont understand how to do it on your own, sometimes i do and sometimes i dont depends on how cloudy the day is. if you know someone who is suffering go get this for them, get it for yourself too! your time will come, it does for all of us. maybe it comes on varying levels or degrees but it comes and i think that it feels almost the same. i dont like it when people think that nate and i have been given a larger pile of crap ... we havent. in fact i think just the opposite we have been given a larger pile of bliss and it requires some dirty work to keep it here with us. that being said its all about how you choose to do the work that makes all the difference.

lastly for today because i must go work on dinner. another book ....

an inspiring look into your own personal health! LOVED IT! it also contained this poem - author unknown
it takes strength to be firm but courage to be gentle
it takes strength to stand guard but courage to let your guard down
it takes strength to conquer but courage to surrender
it takes strength to be certain but courage to have doubt
it takes strength to fit in but courage to stand out
it takes strength to feel a friends pain but courage to feel your own
it takes strength to hide your own pain but courage to show it
it takes strength to endure abuse it takes courage to stop it
it takes strength to stand alone but courage to lean on another
it takes strength to love but courage to be loved
it takes strength to survive but courage to live

enough said!

Sunday, September 14, 2008

being the parents we also wanted to be ...for a day

It never is like what you thought it would be, and for us we arent quiet the parents we thought we would be, nor do we have the time always to do all the things we thought we would be doing. we are working on a better balancing act. but yesterday aug 13th was perhaps the most perfect day of the year for all of us.

It began pretty typical for a sat morning, 3 kids in bed with mom watching cartoons while she tried really hard to sleep just a little longer. then it continued with 3 kids more willing than usual to participate in jobs and the cleaning of the house (which if i look around now on sunday afternoon that was all obsoleeeeet!) and the 4th kid, the hub actually folded 4 loads of laundry piled up in the bedroom and even better he did it with out me asking! yahoooooooo!

then nate and his clone of a son had a special moment while nate gave stock a cougar jersey that we had gotten him with harvery unga's # on it in preperation for their big man day at the game. they soon headed out the door both smiling from ear to ear!

they came home smiling from ear to ear as result of this record breaking monumental game that carries with it a 56-0 score!

just as they left i got ready to start the craft day i had planned with my girls. i prepared myself to not be a perfectionist and let the little ones actually help. i got the girls together and we headed outside in the most perfect weather i could possibly imagine! it made me never want to leave the backyard! to start our first craft. did you think i was going to divulge all the spooky hallo's now? no way sir! here is a sneak peak of the first one.

i felt so good just to hang out with them, talk and just do and be who i always thought i would be. it made me suspiciously happy. we didnt want to move inside for lunch so i prepared PB&J and avacado slices as well as a little apple juicey juice for us to munch on the americana quilt on our very own backyard green.

the next craft project was a definite outside project and a little messy but perhaps the most fun we have ever done, our porch kitchen table came in super handy .... only a sneakers peakers here too!

this took pretty much nearly all the time up before the boys got home so we headed into cath and take a little break. then we decided to make cupcakes .... saylor reminded me that you can make cupcakes out of anything so it didnt matter if we had all the ingredients or not. how would we even know this without cat?

i would like to say my cupcakes turned out like this ....

but they didnt. why? cause its rare that i am the exact mom i thought i would be. i dont make perfect cupcakes,(though i would really really like to!) in fact there are few things i make perfect at all. none the less its not the look, its whats inside because we made these cupcakes out of love, togetherness, laughter, patience, friendship, sugar, and of course chocolate! because you can make cupcakes out of anything ... anything? ANYTHING!

then off to the video store to aquire some flicks and a game to entertain us all. the girls settled in saylors room with a movie that fled saylor to a deep sleep quickly and relieved us of her constant care for just a while. stock and eventually story as well as a friend tried to master indiana jones lego style on the Wii while nate & tried to watcha movie in between kids needing us, phone ringing, and friends coming over ...

this was the movie of a choice. seemed fitting a little spooky to go along with our halloween filled day. as most of you blog stalkers know i am pretty deep when it comes to film. what can i get out of this i always strive to know. well WARNING! if you have yet to see this film and you want to perhaps the next paragraph or so will spoil so BEWARE! this was a good film, a thinker, i like those kind especially. what is the definition of premonition? Premonition refers to a situation when future events are foreknown or forecast as said by some online dictionary. i wonder if premonition really has to be actually seeing the event though? if thats the case i saw our rolling garden roll down our rocks only a few weeks ago meer moments before it happened. along with many other life events. however not sure i call it so much premonition as i do revelation, inspiration ... ok i like premonition too! but could i change the fate of the rolling garden? no i couldnt and either could sandra bulloch .... but what this movie teaches i think is that you can change the circumstance by which the event happens and how you feel about it. good flick. that finished of the day for the most part and began a less then perfect night of sleep so i wont go there.

that all being said a few more frivilous things from this last week ...

also saw this one for the first time this last week. it intrigued me and i found it to be most delightful until the last 3 minutes, when the entire movie and feel was demolished by a poor ending! so i have decided to edit my own copy one day to end just when the boy returns home. or maybe just after the crash of the airplane. then show it to my kids, so they wont be robbed of the real message.

i also tried my hand at homemade tapioca pudding for the first time in my life. i can understand now why this is not made in the average american home. i naively assumed that most pudding was pretty instant. shows what generation i come from ... perhaps microwave generation? it was well worth the 2 hours of nearly constant attention it took and i am pretty sure i will make it again ... in a year!

Thursday, September 11, 2008

Halloween is upon us

So halloween is my favorite holiday. its not the actual day per say ... its more the season. perhaps because its a decorated holiday and after all that is what i do. of course xmas comes in a close second for me. it must be my inner goth or somethin. this year i actually have the time to halloween craft with my kiddos. there are a few projects piled up that have wanted to get to for years. so as i get them done one by one i wanted to share them with you ... they are pretty thrifty crafty if i do say so myself. i want to know what you think, i want to know some of your goolish ideas, and screamin good deals!

this is the fountaining halloween garden tree. its pretty crafty and fun to do. we started with a weeping willow silk tree that is a posession of studio stems. its leafs were already stripped for prior design use and it was already painted black so a bit of the hard work was done months ago. this will run you about $50-$100 at a craft store but you can often find used silk trees or perhaps you have one that your not sure you want or arent sure what to do with, why not strip its leafs and paint it black? if you dont have one, granny might! it didnt come with this perfectly gothic victorian porch pot, no that was studio stems' as well. it cost me about $40 at tai pan about 2 years ago but you get the idea. you could even paint an old pot lying around the house. i filled the bottom with rocks to support the tree. next a took a black leaf garland i found at michaels for $1.99 and stripped the leafs of that and wired them onto the tree - all silk items basically have the same parts. i wanted it to look sparce. then i cut with wire cutters a xmas style halloween black wreath branches and twisted those on. i also found that little goofy black wreath at michaels, or roberts has them too and sometimes even wal-e-world, it was around $2 as well. then i took about half of a black feather boa and intertwined it were the branches all meet to make a gothic feather nest $4 at any of the above stores. the black crow resting in the tree ran me about $1 at the dollar store. then another $1 buys web cotton that is stratigically strewn. ping pong balls make the little crows eggs. i figure you can assemble this little ansamble for about $75 of if your super thrifty with the finding of a tree and pot then for as little as $10-$15!
there you have it.... a gothic garden feature for the season

Wednesday, September 10, 2008

she's off and away

"she is off to great places she is off & away." she is off to the "big" school. i handled it well, no crying believe it or not. after meeting with the school nurse (its proving to be a bit of a pain getting her health care plan in tact) just after droping saylor off i headed to yoga to distract and clear my mind. good things.

i felt so bad not being there to take first day pics this year so i got some in yesterday morning since it was picture day! fun stuff. now i dont feel at all guilty! our lives are our lives and i wouldnt want them any other way, i wouldnt want it any other way!

Tuesday, September 9, 2008

crafty, thrifty solutions ...

i was so emotional sunday i apalogize! so today was saylor last tube removal and post op dr apt. it went well! the cathing program is going as well as expected and she looks good to him. she has this little area of her abdomen that sort of looks like its swollen or has hyrnia or something he said it was ok for now and that it will go away. we talked "leaking" problems and like i suspected he said we would probably try injenctions of collagen first and then it would probably be inevitable that she needs the sling surgery but that we need to wait at least 6 months for her body to accept what we have just done and figure out just how its going to function and he can see just what is happening on film (bladder studies.) sometimes i guess these patients of this surgery can be drastically different in function in many aspects 6 months later. so for now we go back in dec or jan for VCMG's and bladder studies etc... and another dr. apt. as long as we dont need Dr. wallis he doesnt need us until then. today i felt much more at ease with the situation and as for the pooping ... as long as we can get it out once a day at least we are ok i guess. its not what it was before but W.E.

saylor wanted to know two things from dr wallis and she asked him herself ... 1. when can i ride my horse? 2-3 weeks he said 2. when can i go to school? ... he replied, how about tomorrow! yeah! i am not sure i am as ready as she is to send my precious angel to the "big" school. tomorrow will be emotional no doubt! but i guess its time.

so my solution, a few days ago i came up with an idea to make it so saylor could wear undies. i thought how can i create a permanent pad that absrobs a lot and is washable that lines her panties. well cloth diapers was the answer. so i picked some up yesterday and sewed a little home made panty liner in just one pair last night, she has been wearing them all day and though she has leaked it hasnt gone much further then my crafty thrifty home-made liner! think this may work. so i made a few more tonight. i will say the old fashion style inexensive thick nice cloth daipers are a bit hard to find ... anyone have a good resource?

tonight has been beautiful for me as my family is all here and seemingly doing really well. the weather is perfect as rain comes down and the fall enters the air and my heart ... i am starting to feel more free to get back to my normal routines (whatever that means) and life, and experience something else inside. as the season changes so have our lifes ... as usual ... as He would have them be.

Sunday, September 7, 2008

hard realizations

The last few days have brought hard realizations about saylor's "systems." they make my heart heavy as i feel we have been through so much already and wonder now what is ahead of us. these feelings are accompanied by the fact that my expectations that i thought were being met were only best hopes, not harsh realities. we had hoped that saylor would not having any leaking from her urethera and therefor be completly dry and easily be able to wear underware. this hope got exagerated and excited when it appeared that she wasnt going to void this way. then we started putting undies on her and slowly realized that she was indeed voiding. it seemed to increase in quantity every day. and our hopes have gone back to what may be realistic, yet i feel disheartened a bit by this step back. there are some things we can do perhaps, medications, collagen injenctions, or further surgery to fix this problem. i dont know how much more any of us can bear. we go back to the doc on tue so we will discuss all these things with him further. the second let down ... came when we thought we were sort of in the "clear" also. her bowells. saylor has always been a regular child. doesnt seem like so much a big deal excpet when you realize that 90% of SB kids have serious bowell problems and consitpation. this requires medicine that makes them loose, bowell programs, and even surgery often. one of my big fears and concerns with the surgery was that we would be "messing" with her digestive system by using her bowells to augment and that we could possibly ruin a good thing going. initially it appeared that there had been no change in her ability to digest and push it all out comfortably and easily until this last week when for the first time in her life she has become quiet consitpated. the reasons? not sure but cant help thinking they may be surgically related. none the less she has no idea that there is anything less then perfection going on with her healing process right now. we are letting her enjoy panty wearing including these awsome batman ones ... her hero and potential suitor. her spirit is back to that of herself and for now she is happy and once again perfectly unperfect ... until tue.

today we had a regional conference in our area, it was hard for me to get up and go ... really hard. the first speach spoke confirming comforting words about my presence there as stories were told of a disabled sibling that left this man greatly molded for the better with no harm done, i felt releif wash over me as i realized it is possibly to get storie and stockton through this with little to no resentments. then he carried on with stories of the disabled boy being teased and ridiculed and my heart hurt so badly for what has been, what will be, and for who we are as humans and what we do to each other. he talked of acceptance and love for all those that are not "normal." how beautiful to experience this morning a realization of who i am and who my children are. he ended with this primary song that has been so dear to our families hearts for 5 years now and once again the tears freely flowed.

"If you don’t walk as most people do some people walk away from you. But I won’t! I won’t! If you don’t talk as most people do, some people talk and laugh at you, but I won’t I won’t! I’ll walk with you. I’ll talk with you. That’s how I’ll show my love for you. Jesus walked away from none. He game his love to everyone. So I will! I will! Jesus blessed all he could see, Then turned and said, “Come follow me.” And I’ will! I will! I will! I will! I’ll walk with you. I’ll talk with you. That’s how I’ll show my love for you." Words: Carol Lynn Pearson, b. 1939. C 1987 LDS Music: Reid N. Nibley, b. 1923 c 1987 LDS

yesterday was my aunts funeral. it was a very sad occasion as i dont think anyone was quiet prepared to loose her. her daughter shared this poem that i heart.

it's titled:
Parable of Immortality ( A ship leaves . . . )
by Henry Van Dyke - 1852 - 1933

I am standing by the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch
until at last she hangs like a peck of white cloud
just where the sun and sky come down to mingle with each other.

Then someone at my side says, 'There she goes!
Gone where? Gone from my sight - that is all.

She is just as large in mast and hull and spar
as she was when she left my side
and just as able to bear her load of living freight
to the places of destination.
Her diminished size is in me, not in her.

And just at the moment when someone at my side says,
'There she goes! ' ,
there are other eyes watching her coming,
and other voices ready to take up the glad shout :
'Here she comes!'

i also wanted to share a little book review ...

i am on a lynn austin kick! all 3 of these were really good books - its been really nice to be on such a reading wave while i care for saylor and am required to quiet my shcedule a bit more than i have been. most of lynn austins writings ... including all three of these just simply remind me to be a good person. remind me that everyone has a story and everyone is affected by life's events. that until we know those stories its not fair to judge and when we do know the stories we wouldnt dare judge!

Friday, September 5, 2008

fantasy football

Today a more normal life post ...

tis is the season in which i become mostly a widow thanks to a hunting season that lasts from aug-dec complimentary of the dedicated hunting program, byu football and the season tickets that make nate giddy with joy, all the other football games on TV, playing football on a city league made up of 30 something boys against 20 somethings and winning, and last but not least fantasy football.

what is fantasy football you ask? first off let me tell you what its not - scantily clad cheerleaders bouncing around. thankfully!

so i complain a lot about this one. i think its because it takes nate away from us while he is at home, he tunes out and just goes to this "fantasy" place. i am super grateful that nate is not addicted to other types of "fantasy" so i am willing to give on this one, yet still i feel that detachment he makes.

so wednesday i sighed when he mentioned that it was draft night for his second fantasy team (he already had draft on monday for the other team which included several hours on his day off of making a "special" draft board.) so at the end of my sigh he asked me if i even knew what fantasy football was. and then i spout this at him ...

"yeah i know what it is .... first of all its research and reading the only topic you will research or read all year, then logging onto the internet (with your wife's help!) to set up a fantasy league with your friends or relatives. its composing your own custom team out of players playing for all different teams throughout the NFL through a draft program that mimics the NFL draft program and allows the league members to fight in a more organized manner. then the playing begins and you watch way more football then you did before you knew what fantasy football was (he watched an extreme amount before so this worsens the addiction to drug like levels!) you watch every NFL game to just watch one player who defines the points he earns your custom team for the day. points earned are based on each of your players game day performances and determine the winners and loosers of your fantasy league. all the while you log on to the internet quiet often to talk trash to each other ins ome guy language about who is doing well and who isnt. this consumes several hours of your week for the full season. "

his eyes got big and he just said wow, you do know what fantasy football is! you should blog abou it! so here i am. blogging about fantasy football and all its woes.

as for the little one ...

she is now successfully wearing these ariel panties. isnt this what we wanted? things are going better and we are all adjsuting to our new routine. she seems to be a bit more herself everyday!

Wednesday, September 3, 2008

surviving one more day

so this is another looooong post! i need to do at least 4 posts so they are all going to get crammed into one. patience ....

the last 24 hours has been a whirlwind of emotions, not sure how i feel or what to think or how to express, or even how to blog the way i would like to ... but here it goes....

yesterday was also my madre's birthday! in amongst all the comotion of saylors tests, apts, procedures, etc.. we celebrated quickly at kneaders. My mom deserves more of a tribute then i have eloquence to give. she is an superb example of sacrafice and willingness to serve those she loves. she is my kiddos second mother and in more of way than any other grandma out there, she really does play mom to them for weeks and weeks at a time. her life is changing to ... (see below) and especially at this time i am grateful for my mom.

last night after we settled back in and cleaned up the first cathing catastraphe this group of youngsters showed up at our house to see saylor. most of them are nate's deacons/scouts that he serves in our ward. a few weeks ago we had a little crisis with tubing with saylor during church, i was at home nate was at church and i had to call him home to help me. when nate left class the boys started thinking about what they could do to help saylor. one of the boys (william) remembered when we had spent FHE with his family how much saylor loved becca's american dolls. Tammy, williams mom, also knew saylor wanted one but i had expressed how expensive these dolls were and how it kind of was out of the question for our family. so williams idea was that the boys all together contribute money to buy saylor an american doll. they chose the "just like you" doll and created a mini saylor, tammy organized them and ordered it and then they all showed up to give it to her. i had to really concentrate hard to not cry, lots of breathing. this struck deep into my heart the warm comforting feelings of support i often times need. these young boys love her and us that much that they would make this seemingly small but realistically large personal sacrafice and service ... it means everything, its why we are here. thank you!

one of the boys who gifted the doll, Johnny. i think he is in love!

this is my aunt shauna ... my moms only sister .... she answered her call to return home to her Heavenly Father early this morning after a very brief diagnosis and struggle with brain cancer. She was 58, she was a yellow personality! she planned, hosted, carried out all family showers, weddings, meetings, parties, etc ... she did it all selflessly. My heart aches for my family all mourning this great temporary loss.

as for how little poops is doing today ... well last night was a tough one that ultimatly ended in nate and i plugging up her pee bag and flushing a little over 100cc of mucus and urine out of her that was not successfully draining or being cathed and causing unsurmountable pain ... for all of us. this morning i was dreading what the day would bring and fearful of how saylor and i would get along with this new cathing program. as it turns out ... start out with low expectations and then your pleasantly surprised. doing better and so the roller coaster continues.

Tuesday, September 2, 2008

sweetest angel

Every night about eight o'clock
I wind the stem of my little clock
And when I look in the crystal glass
I see a lot of faces pass
Of those I knew
And those I know
And you now coming
And you to go

Here's a word I'd like to whisper
And I'd like to have you listen

All this world is made of love
You are fresh from heaven above
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel

When I hold you by your hand
I'm in my happy promised land
When I kiss you in the dark
I'm just happy as a lark
So let me come as close as I can
And lay me down beside you

Here's a word I'd like to whisper
And I'd like to have you listen

All this world is made of love
You are fresh from heaven above
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel

So let me come as close as I can
Let me bring my scattered pages
Let me lay down here beside you
Tonight, and I will whisper

All this world is made of love
You are fresh from heaven above
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel

as written and sung by Jonatha Brooke

this song was on my mind most of the day. words dont express the emotions of the steps forward we are taking, the ones that are fearful and unknown, the ones that require new commitments as old ones get left behind.

today saylor had a cystogram to find out how much her new bladder can hold right now and mostly to see if it was leaking anywhere or refluxing into her kidneys. no reflux, no leaking! good things. she is only holding about 75cc max and thats only 15cc more than she was preop. my initial feelings were ... "that wasnt worth it for just 15cc and what happened to the other 175 cc of space he said he put in there?" well it takes some time and her capacity will grow we hope. but for now its still pretty minimal. dr wallis was very pleased with the results and images from the cystogram. he removed the mit cath that was sutchered in and oh wowie did it stink! he cap locked the super pubic tube (not what i was expecting) so this means no more pet pee bag! but its there for emergency reasons and while we all adjust to cathing (its even already been used) ... which brings me to ... i thought this would be the easy part. i think all 3 of us are emotionally, physically, & spiritually exhausted as we embark on this new cathing mit program. so far she is not liking it at all and its a fight every two hours which makes it more like every hour from start to finish and its really quiet sad and taxing, takes us all to a place we dont want to be.

we go back in one week (if we are ready, its kind of up to us when) to have the super pubic tube taken out.

Dr wallis reitterated how important it is to keep her bladder safe and cathed, drained etc... that patients have died from ruptured bladders and just how intense this can be for the rest of her life. how kids have had full bladders and instead of cathing they went sledding, hit a bump and gone, done returned to heavenly father.

pressure is on. then to finish our night a most beautiful gift arrived at our door .... more tomorrow! for tonight i just want to lay next to my baby and whisper ... you are the sweetest angel!