family pic

family pic

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!