celebrating life

this is UCSF the hospital i lived in for the better part of the 2003 year. this has been on my mind because you see this ...


was born yesterday 7 years ago on april 28 2003. yes my baby saylor is 7! i can hardly believe, well in fact i dont want to believe it! this time of year gets me so nostalgic, reflecting on what we went through and the things we continue to go through. its a time of reflection and honestly immense gratitude for this amazing experience in my life. my life, our lives really revolve around this little angel in our home. I and therefor we would not be who we are individually or as a family without the circumstances that all this represents. often people ask me how we do this ... and you know what i wish that everyone could do this. i realize that its not true that everyone really can do it, but i wish this on everyone i care about. strange i know, but this is a beautiful life that brings blessings abound that are simply not experienced in any other way. truth be told you all are missing out!!! thats the simplicity of it all.

i do wonder why me? and not in the way you think, i am up for the challenge i can see the importance that it plays in my life, but am i up for the priviledge, responsibility and trust? its hard to not question how i became the chosen recepient to mother a spirit that is not containable and is immortal, larger then life here on earth, something seeeeeeringly special? i really do wonder, i dont feel good enough and though i used to question by adequacy i have learned that HE makes me adequate. but i will never know why me ...

saylor is happy and healthy and doing fantastic. we were able to get her a bike that she can actually ride! its tear jerking to watch it makes me so happy to see her do something "normal" in the realm of her "abnormal" life that she is becoming increasingly aware of. {pictures to come}

this day brought about a lot of emotion as we also attended the funeral of a young boy who was also disabled. he RUNS pain free now. but it really brings home the frailty of a bright star and how easily that could have been my baby. a life celebrated and shared for such a short time. amazing parents, amazing family, amazing blessings. and with it comes amazing heartache. i hope the petersons know they are in our prayers and that they made us that much more aware of how blessed we are! we love our kids a little more today if thats even possible.

saylor the olympain part deux!

i know i know you all have been anxiously waiting for this follow up post on the steve young ski classic. and here it is. i finally got around to it. i just wanted to ride the high wave we were on until it fizzled. just enjoy it you know ... usually for me that means sharing it but some parts i just wanted to keep to myself for a bit.

so our private invite came from mark fox @ twin labs who so graciously donated 2 seats to our family at his table. so we had to decide who would go. i kind of knew all along i would end up going, i could feel it in my bones, like when people asked if were going even before i knew we were it seemed wrong to say no. but of course i did say no at the time. so nate and i talked it over and he said he thought i should go, and i felt really guilty that more often then not i get all the parent glory being the mom and all so i said well ask saylor let her decide. and truth be told if its something fun i would expect her to pick him. but she picked me this time. and it felt so right to everyone. although i was a little torn that we wouldnt all be experiencing this together.

later while getting ready i have this overwhelming feeling that i should be prepared to say something in front of all these people, which i quickly excuse as nonsense ... but then i know better dont i?

saylor & arrive at snowbird that evening and she is all smiles, still on huge high from the day. i keep thinking she must be exhausted but somehow she is not. we start mingling and checking out the silent auction. she is most definately one of only a few kids there and the smallest by far so she gets overwhelmed walking around. there is celebrity athletes all around us. we run into this guy and i am so emberassed to say i dont know who he is but i know he won a gold medal in the vancouver games ... so he lets saylor wear it!

super heavy, super cool!

we continue to mingle and finally we get to go sit at our table. i feel so silly and kind of nervous, out of place. we had bidding numbers (everyone did) and i have this small kid with me this small miracle, this small celebrity. people are just gravitating to her, i am so overwhelmed and she is just eating it up and people are just adoring her right and left.

we take a seat and no sooner do i that one of the directors of the program comes up to me and asks if i will speak ... yep. knew that was coming. a few min later barbara young comes over and tells me how she is supposed to speak and how she has been thinking about what to say and how to say it and how glad she is i am here because she wants to follow the winter games theme of paying hommage to the moms. so she says i want me to speak. ok. well i knew it was coming so i gladly oblige and feel all those butterflies start to flutter but then it all gets peaceful and i feel fine.

people start to arrive at our table and saylor starts making friends as usual. she met this great guy garry pay a former BYU football player and a VP at twin labs. she wont leave him alone and he seems to be happy to revert his age back and accomodate her playfullness.

people are just coming to our table right and left to talk to saylor and meet her. videos are playing of saylor and some of the other participants and hers are by far the cutest most touching ... well i am a bit bias, but really we know her right, we know what she eminates!

so then the time comes. barbara gets up and eloquently shares that she doesnt know what its like to be the mother of a special olympain and asks us to come up. saylor gets up on a stool next to me at the podium and promptly but discreetly asks me please do not cry, i promise her i will do my best to hold it in.

but just as i start to speak i of course start to cry. saylor reaches out and starts rubbing my back and the entire audience of i dont know 700 or peeps or sighs at the same time. and we both giggle. i share a brief history on saylor and some in depth gratitude for wasatch adaptive sports and what they have done and continue to do for saylor and how we couldnt do this on our own physically or financially. who knows what i said, you for sure sit down after that and think what did i say? but the difference was this time around i didnt feel like an idiot. i felt like what i said was the right thing, whatever it was.

on my way down right there at the front next to the podium first table, dick bass the owner of snowbird .. the owner peeps ... the OWNER takes my hand and with tears in his eyes smiles and tells me thank you. that felt like a million bucks ... he probably doesnt know that he wears off so easy.

we continue to be swarmed. and saylor is far to distracted to eat her $300+ plate of food. but i enjoy it:) and she continues to enjoy the attention. we meet tons more athletes and just lots of people coming up to thank us for sharing our story etc. it was so nice. i felt so good. i have always believed in sharing her. but this really felt good. one olympian in particular .... couldnt stay away from saylor ..

lincoln dewitt ... just keeps coming to our table. stays a few min and goofs with saylor then goes right back to his table, only to come back a few min later again. it takes me a few times to realize that its not in passing. he is going back and forth just to interact with her ... smitten clearly. they share stories and laugh and play a little. so many smitten faces around us. she is eating it up. sharing her medal and stories. laughing. its so fabulous. even know weeks later i sound and type like a little girl retelling the story of a fantastic night.

it truly was just so fantastic! saylor & brought home autographed chad lewis books and a goodie bag which then allowed nate and i to hit snowbird for a day ... man was that the most epic boarding day of my life! it extended the high tremendously as i explored 4 feet of fresh untracked powder in mineral basin with the love of my life. bliss!!!!!!

we met lots of people who i think in the future will play a part in our story, who have meaning to add to our story and support and i am so grateful. and so our story continues ...

i would dare catch you up but arent you tired of reading about us yet? that will have to wait for another time because there really is so much other stuff going on good and bad.

that being said one more medal pic ... this is saylor wearing henry cejudo's (gold medal winning wrestler) gold medal at lunch this last weekend. we got to spend some fun times with this delightful young champ!

it was more of a boy wrestling stock thing but who says the girls cant reap the benefits?

my olympian part 1

I havent been so great about blogging, our lives have been well ... busy & sort of confusing. This weekend brought special times and clarification. I wanted to share with you what a beautiful experience we had participating in the steve young ski classic at snowbird through wasatch adaptive sports. this is merely part 1 of 2 and 2 was the best part for me but 1 was the best part for saylor!

so the steve young ski classic is sort of like a mini utah special olympics. wastach adaptive sports is the program that helps saylor ski along with many other special needs individuals both young and old. the ski classic is where celebrity athletes come and ski with the program participants in a race. saylor mostly ski's with amelia who works for WAS and you will see her in several pics, darling young lady! she competed against the ever so great chad lewis.



and she won of course!



this is saylor right before her race with chad & kyle whittingham





and some classic moments ... saylor using her crutches like poles (actually worked quiet well) and the smallest participant (saylor) with the tallest participant (mark eaton)


and then there was the GOLD medal! this was such a high for us all but especially for saylor. she kept saying things like "this is what i want to do with my life, i want to ski!" and she wore a smile all day and she has been wearing that gold medal nearly non stop since the moment she got it!

the celebs ... just to name a few ... steve young, chad lewis, kyle whittingham, rob morris, lee johnson, mark eaton, lincoln dewitt, & muffy davis along with several para-olympic female athletes that were specially inspiring and several other professional athletes.

in the evening on steve young ski classic day there is a benefit banquet auction dinner type thing (roughly $320 a plate to start with). that is for the athletes and all the peeps out there with the mooola that support this program. its the programs primary means of support and only happens once a year. our ski day ended with a private invite to attend this event and so there is more to come part deux!

gold

hall or nothing ... you must see THIS inspiring story about an olympian with spina bifida that just took gold!

saylors inner pirate has died

for the last few years {as many of you know} saylor has adorned only a single earing. Its because we made the mistake of not having them both punched at the same time, so she refused to do the other ear! years have since passed, filled with people telling her she has lost her other earing and other comments, not knowing that she only has one earing, thats it and she is pleased and happy with that. We have attempted to bribe, con, and convince her into the other ear several times with no success. As of late she has been waring a darling tink earing that she acquired from our last trip to disney. She simply would only like to wear this one tink earing, and so its been in since oct. its kind of wide ... and well it concealed the fact that her ear was infected until i discovered this was the case last friday {i know i am not the worlds greatest mom any longer} anyhow we removed the earing, but not without some tugging, the back was almost grown into the infected skin. Its not even been a week, infection is clearing but whole is grown in for the most part. So she has opted to abandon her one earing days for no earing days and thus her inner pirate has deceased.

on another note. i have cleaned out the girls closets and while saylor cant maintain a pair of pants for a day she can with shirts, skirts, sweaters, and jackets and we have some really dawling pieces that are tooooo small. strange considering that she is like barely 38 pounds and about that height to and she is nearly 7. anyhow we initially were thinking kid to kid ... but i have found out thats not such a good idea anyway ... sometimes we give them to family or friends but really as i think about those folks my heart turns away {i am sorry ... its nothing personal} i think i want these to go to a little girl whom really needs them and would really appreciate them and whom wouldnt have such brand name cute clothes otherwise. i need suggestions in finding this little girl so shoot me a comment or email if you know of one.

emotional intensity

So i dont blog as often as i should or want to or am bugged to but things seem to be daunting me these days. lately i cant even imagine how to say something or what to say. like nothing but chaos sometimes organized sometimes not is going on around here. so here is the basic update.

Nate: still so busy coaching stock's wrestling team and with work for which we are so grateful for. He still has some kitchen projects (after our recent tear apart the kitchen new appliance fiasco) to finish before we hit the outside of the house hard to get that finished up soon so we dont look so ghetto. he is healthy and happy.
nate would tell you that he got seriously validated by saylor this weekend. at clinic they ask the parents a series of questions every time. sort of generic stuff but they always ask who the primary caregiver of the child is. and so i just replied "i am" and saylor suddenly says "AND my dad!" booooya!

Storie: doing great as always, brilliant and happy. growing up way to fast. she has one or two more boarding lessons and i think ill try and take her at least once more this season. she is doing well with violin and orchestra and has a performance this week. so mature and responsible. had a situation with her teacher this week ... i dont mean to be the kind of parent who thinks their kid can do no wrong or that their kid is always right over the teacher who is the adult, but she is pretty responsible and the circumstance resulted in her honesty and her rendition. super frustrating for me as a parent, not sure i like her teacher and i will be so glad when this year is over! he doesnt seem to respect the children enough to speak kindly to them. or to believe what they are saying for that matter.

stock: we are in freestyle/greco season with a few tourni's still offering folk. he is doing well placing in the top 3 almost always. and this last weekend he took first in a greco tourni, freestyle tourni, and folk. i guess the kids were no match for him. good for his confidence and mat time is always great. we recently found out he is at 9th in the nation for his age on www.themat.com such a busy kid and really focused on what it is he wants to do. i cant keep a ball out of his hands when he is not wrestling. and at school he is the most liked, kindest and most popular kid. true leader with the best qualities. reminds me so much of his dad. reflux is under control, crossing our fingers.

saylor ... well for the first time in well .... ever. things feel so good in regards to saylor. nothing major on the horizon. she is more healthy now then she perhaps has ever been. things are going just the way that we have worked so hard to get them to go. she is doing well in school in our opinion and has lots of friends. the whole school adores her and even the big kids seem to gravitate towards her. poo and pee working so fantastic and smoothly with no infections and complications and neuro stuff has disappeared. she seems happier to and so do we. spina bifida has for the first time ever taken a back seat in our lives and other things have moved forward on the list. its very surreal and emotional. a new stage, a new chapter in our lives. i keep holding my breath for the end of such bliss ... and yet i have comfort and peace and a knowledge that this is here to stay for a time.

me: working on education in floral design and business. and you just running studio stems and UBB. being a mom and all that such stuff. personal goals flooding my mind and wonderance as to what is next for our little fam. had a highly intense weekend, or friday i should say that i wanted to share and document. it was emotionally overwhelming, a blessing and a curse.

we got up really early to major snow storm and headed off to pcmc for sb clinic. it felt odd because for once i didnt feel like we needed to go, kind of silly. lots of kids go to clinic every 6 months or once a year just to stay on top of things but we have never been that family, we are at pcmc way to much, second home, but now i feel like we have rented it out to someone else for a while. we got there safely and a little wet. finished clinic with all sorts of happy emotions rushing through my blood when i found out that a good friend of mine was upstairs in the PICU with her baby who had been life lighted to PCMC because of a respiratory bacteria. So we went upstairs to visit and it just nearly broke my heart. Good thing carrie was handling it so well and was her usual smiling optimistic self, otherwise i would have been a mess. her baby brought so many memories back to me but also i just felt so heartbroken for the situation and how we are all required to suffer. i wanted so badly to hold them both and make it all better, to do something of value to help them get through. then on the way home i received a call from another really great friend of mine in the thick of cancer and chemo who needed me at that moment. so i literally switched cars and left saylor with nate to rush to yet another hospital to be with her. another heartbreak of a different kind similar feelings. overwhelming feelings. and yet this is not me that tragedy was striking. while i was with my dear friend nate took saylor to work. just so happens he was working on this kind womans home ..

this is the general primary president of the church of jesus christ of latter day saints. and yes that is my daughter sitting on her lap in her home. while i am off sitting through chemo with my friend. this woman is loving my sweet little girl and telling her all the things that pres monson would have her tell saylor. again heart wrenching stuff! i spent the weekend in service for the most part as i endeavored to help my friends and family around me emerged in tragedy. there are several of them beyond what i have mentioned. i am so grateful for the gospel in my life, so grateful for nate and who he is, and so grateful for my kids, my family, my friends and the very blessed and rich life i have been given even with all the suffering that i experience and is around me its so beautiful. so beautiful.

storie turns 10

Yesterday was so perfect. simply perfect

it also was very surreal. It seemed dream like that my little girl was sitting on a ski lift right next to me as we ventured on our snowboarding adventure. that was my little girl who kicks trash on a board next to me ... my kid! it was so beautiful but surreal. boarding with mom was all she wanted and when she was asked what the best gift she got was she replied with boarding with mom. tear jerking ... my life is passing my by but its so amazing. i am so blessed. she is such a beautiful smart talented amazing girl. i cant believe i made her and then havent screwed up royally. instead she is royal.

i have to admit i had some reservations about taking her. in fact i was mostly geared up for sitting my behind on the bunny hill mt for the day. she is in a boarding program through her school that provides 6 lessons. she is only half way done with those so i couldnt imagine that she was capable of much even though she had assured me she indeed was.

i was more then pleasantly surprised with her capabilities. we got about 15 runs in 4 hours. she is speedy, barely falls, s curves and leafs with grace! i worked with her a little on getting more comfy on that front edge (something hard for us all lets face it) and by the end of the day she had improved dramatically. she was most proud of our little black diamond adventure.

she cant keep up with me per say but i dont mind the speed by which we ventured most of the day. at one point i was waiting for her and a frustrated woman teaching a boy who looked to be a little younger then storie pointed out how good she was and to do what she is doing! i was so proud. such a good day.

shout out to one of stories BFF mattea for sharing a birth date with her! happy bday girl and to Joel a still missed friend!